FREE LAPEL PIN OFFER FREE LAPEL PIN OFFER · 13 A Guide for New Ostomates Changing your pouch away...

Cover story• A Day in the Life of

a Volunteer

Inside• From a Carer’s

Perspective

• A Stoma FriendlySociety

• A Better Qualityof Life

FREE LAPEL P IN OFFER FREE LAPEL P IN OFFER

Winter 2016 | Issue 40

Helping ostomates since 1967Helping ostomates since 1967

Happy

New Yea

r

F R O M T H E E D I TO R I A L T E A M

| W E B S I T E : W W W . C O L O S TO M YA S S O C I AT I O N . O R G . U K T I D I N G S | W I N T E R 2 0 1 6 | 3

EDITORIAL TEAM

Chair, Editorial TeamColostomate/Helpline VolunteerRosemary Brierley

Trustee,Colostomate & VolunteerSarah Squire

Colostomate & Helpline Volunteer Jackie Dudley

Trustee,Colostomate & Helpline VolunteerIan Jackson

Stoma Care Nurse AdvisorJulie Rust RGN, Dip, N MSc

General ManagerSusan Hale

Products & Services OfficerArvind Anand

COVER PICTURE

Jackie Dudley in her various roles at theColostomy Association

How to contact TidingsBy letter write to:

The Editorial TeamColostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone: 0118 918 0500

Via e-mail: [email protected]

Advertising Enquiries:For a media pack and advertising rates.

Contact: Arvind AnandTelephone:0118 918 0500

E-mail:[email protected]

Tidings Magazine: The views expressed by the contributors are notnecessarily those of the Colostomy Association. Greatcare has been taken to ensure accuracy, but theColostomy Association cannot accept responsibility forerrors or omissions.

Disclaimer: The display, description or demonstration of productsand services or the inclusion of advertisements, insertsand samples within Tidings Magazine does notconstitute an endorsement or recommendation ofthese products and services by the ColostomyAssociation.

©Copyright 2016 Colostomy Association. All rightsreserved. No part of this publication may bereproduced, stored in a retrieval system, ortransmitted, in any form or by any means, electronic,mechanical, photocopying, recording or otherwise,except as permitted by the UK Copyright, Designs andPatents Act 1988, without the prior written permissionof the publisher. All marks acknowledged.

As we begin a New Year, the ColostomyAssociation president, Colorectal SurgeonIan Daniel FRCS, looks forward to 2016and the launch of several new initiatives.Our chairman, Monty Taylor looks back atwhat has already been achieved since theColostomy Association was formed by asmall group of dedicated volunteers tenyears ago.

We must never forget, however, that theroots of the charity go much further back towhen the Colostomy Welfare Group (CWG)first began, and so in 2017 we will becelebrating 50 years of supportingostomates. Back in 1967 CWG wascomposed entirely of volunteers who all hada colostomy and were committed to visitingpatients in hospital to present themselves asliving proof that it was possible to live anormal life. Although times have changedand today ostomates are probably morelikely to meet one of our volunteers at anOpen Day arranged by one of the manystoma appliance manufacturers, or on asocial media site than on a hospital ward,our volunteers still remain at the heart ofour organisation.

In this issue of Tidings we are taking theassociation’s much appreciated volunteersas our theme. Many of you will recognisethe face on the cover. Jackie Dudleybecame a volunteer in 2002 and is a longstanding member of the editorial team. Shebegan as an admin volunteer in our headoffice in Reading and has come in to helponce a week ever since. We asked Jackie totell us more.

Three other people who feature in our reallife stories are also volunteers, Moira in NorthStaffordshire, Carole in the Southamptonarea and Mike in Wolverhampton.

These stories illustrate the two extremes ofstoma formation; the life–saving emergencyprocedure as in the case of Mike who had

peritonitis following a burst diverticula, andChris who had cancer and entitles his storyLife after All. On the other hand, Carole andPeggy opted to have a stoma after sufferingfor years with IBS and incontinence andwrite about A Better quality of life.

Our volunteers, who all have a stoma, canuse their experience to answer practicalquestions as Sue Hale, ColostomyAssociation General Manager explains inher article How the Colostomy Associationchanges lives. The telephone helpline isone way of providing support and in thisissue we feature the type of questions thatour volunteers will answer in the eveningand at the weekend. Some of the callersmay ask about irrigation or would like totalk to someone who uses this method ofcolostomy management. On the irrigationpage Sarah Squire addresses a newirrigator’s concerns.

When I meet new ostomates at Open Days,they will sometimes confide in me theirreluctance to go out in case they need toattend to their stoma before they get back.With them in mind, in this issue we includehints and tips for changing your pouchwhile away from home. In the next issuewe will move further afield to considertravelling and holidays. We are hoping thatthose of you who have had a stoma forsome time will write in to tell newostomates about your holidays – both inthis country and abroad; how you feltbefore you left home the first time afteryour stoma surgery and how you copedwhen you got there. By sharing yourexperience you could encourage newostomates to plan their holidays for 2016.

Look forward to hearing from you.

Happy New Year to AllRosemary Brierley

on behalf of The Tidings Editorial Team

Email:[email protected]

dear READERS

FREE lapel offer

See page 57 for details.

not actual size

A Hollister T

echnologyTe

e no matte

M d Fl

D i d t t

tSof

heA Flhe Mad

ft

Mod

Soft

FlIntr

A Flo

Madthe

d it Convex.

NEWexible FNEWde Sec

derma Flex Design

t Convexg

ibl Fitexible Fit.oducing

e.de SecurNEW

what s

• The co

ovidpr

stoma

• Desig

Fewer

e, no matter ned to stay secur

shape the body takes.

eate an optimal fit by onvex barrier helps cr

ecessed ound a flush or re aressurding gentle pr

a, while conforming to uneven body contours.

otect against leaks. ned to conform and pr

r leaks can help maintain healthy peristomal skin.

Moderma Flex SoftConvex PouchModerma Flex Soft

• The viewing option allows you to

position and observe output with

• The skin barrier has an adhesive b

.enhanced security

• Built-in belt tabs can help keep th

place, for added security and pea

• vailable in Midi and Maxi sizes.AAv

l

check pouch

the lift of a flap.

der for bor

he pouch in

ace of mind.

D.y“Hollister Ostom Moderma Flex and The Hollister logo,idingsautumn2015.Tted.©2015 Hollister Incorpora

t FREE lTT

o request FREE samples, please TTocontact Hollister at 0800 521 377 or email .comsamples.uk@hollisterr.

ted. are trademarks of Hollister Incorpora.”tterDetails Ma

T I D I N G S C O N T E N T S


How to get intouch with the

ColostomyAssociation

The Association represents the interests ofcolostomates and other ostomates. Weprovide support, reassurance and practicalinformation to anyone who has or is aboutto have a Colostomy.

How to become a member of theColostomy Association

Simply contact us by post: Colostomy AssociationEnterprise House, 95 London StreetReading RG1 4QA

By telephone: General Enquires: 0118 939 1537

Stoma care queries only:Freephone Helpline: 0800 328 4257

By E-mail: [email protected]

Find us on FACEBOOK:

Join our ‘closed’ group today simplyput Colostomy Association into yourFACEBOOK search bar, click on Groupand click on ‘Ask to join’ you will beassured of a warm welcome!

Visit us and register at:www.colostomyassociation.org.uk

Don’t delayDonate Online today!There are NOW two ways to donateonline

Visit the Colostomy Association websiteand simply click on the donate panel onthe home page.

Visit the Just Giving home page you will seea search panel ‘Find a Charity’ type inColostomy Association.

Updates8 Colostomy Day9 New Year Messages

CA President,Ian Daniels FRCS andCA Chairman, Monty Taylor

19 FundraisingA thank you for your generousdonations and fundraisers

30 New productsKeep up to date with thelatest products and services

39 CA NewsSue Hale reports fromHead Office

From HealthcareProfessionals

50 Dear NurseJulie Rust answers your lettersand e-mails

Living with a Stoma13 A Guide for

New OstomatesChanging your pouch awayfrom home

23 IrrigationSarah Squire answers a newirrigator’s questions

35 From a Carer’sPerspectiveMack shares his experience

48 The ColostomyAssociation HelplineTypical questions

Real Lives7 Life After All Chris

Lewis

11 Souvenirs…andtummy upsetsMoira Hammond

14 A Better Qualityof LifePeggy Farley & Carole Summer

17 Pathway to aColostomyCA volunteer, Mike

Focus On31 A Stoma Friendly

SocietyThe CA Campaign

32 A Day in the Life of aVolunteerJackie Dudley

37 How the CA changeslives

41 Getting involved withthe ColostomyAssociation

Support27 Stoma Aid

How the Service will Work

43 JOSHHelpline for carers of youngostomates

45 The Facebook GroupA mini Meet-up in Scotland

47 The BreakawayFoundation

52 Readers’ WritesYour letters and e-mails

59 A Local GroupOldham Stoma Support Group

60 List of local supportgroups

2

1

The Colostomy Association is a charitable company limited by guarantee (Registered Charity No: 1113471).

inside this issueall your regulars & special features

Flushable

double NEW Aura Flushable

Now double the confi dence

Aura Flushable is the next generation of stoma pouch in our fl ushable range – the only fl ushable range in the world. The inner liner of Aura Flushable can be fl ushed either with or without the fl ange as both are fully biodegradable. As well as reliable, convenient and fl exible disposal, Aura Flushable offers the comfort of medical grade Manuka honey, which may help promote healthy skin around the stoma.

It’s time to fl ush the worries of pouch disposal away.

Find out more at www.clinimed.co.uk

CliniMed Careline: 0800 036 0100

Manufactured by Welland®, a CliniMed® Group company

Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 527312 Email: [email protected] or visit www.clinimed.co.uk. CliniMed Ltd, a company registered in England number 01646927. Registered office: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. Welland®, CliniMed® and Aura® are trademarks of CliniMed Holdings Ltd. © 2015 CliniMed Ltd. PID 2234 09/15

T I D I N G S | W I N T E R 2 0 1 6 | 7

R E A L L I V E S C H R I S L E W I S

| W E B S I T E : W W W . C O L O S TO M YA S S O C I AT I O N . O R G . U K

It was September 2014 and I had beenfeeling ropey for a little while. “Chestinfection” said a GP. “Stress because ofthe death of a very close friend” wasanother suggestion. “Adverse reaction toantibiotics” was a third alternative as Ibecame sicker and was unable to keepfood down.

Eventually on Wednesday 24th SeptemberI had a scan and two hours later I wasadmitted to hospital. Less than a day afterthat, I had an emergency operation toremove a substantial blockage in my largeintestine. The plan was to join the two endsof what remained and all seemed to begoing well, as by the Friday I was takingslow walks around the ward. By Saturdaythe repair had torn, I had severe peritonitisand after a second emergency operationmy wife was told that I probably would notsurvive the night and that she should getour two sons to join her.

After five days in intensive care and fiveweeks in hospital I defied the odds andwent home. I had lost over four and a halfstone, was very weak and had an ileostomywhich I had never heard of (colostomy yes)and hadn’t expected. I felt that life as weknew it had come to an end. No moretravel (we had taken early retirement to dojust that), no more rich food and drink, nomore rough and tumble with thegranddaughters, no more visits to mybeloved Twickenham for rugbyinternationals – in other words no more of

just aninterminable

round ofbag emptying,bag changing

and leakages...

..How wrongcould I be?

all the things I really enjoyed; instead, justan interminable round of bag emptying, bagchanging and leakages.

How wrong could I be? The stoma nurseswere great in helping to sort out leakingbags. My wife, Jo, was just fantastic inmaking me feel loved, wanted and normal.Her patience and understanding wereinvaluable. Family and friends werewonderfully supportive and I gradually grewstronger.

Three months later we went away for a fewdays to the Cotswolds and I survived, eventhough my wound had not fully healed andwas being dressed every other day.Christmas was spent with one of my sonsand then in February a corner was turned.My wound healed and life startedimproving. With a nervous son and brotherto watch over me I went to Twickenham tosee England vs Italy, thoroughly enjoyed itand drank a few beers! Two more visits toTwickenham followed and a visit toWembley to see Bristol City play. We wentto Center Parcs and I cycled round the parkwith Sophie my granddaughter and evenwent down the flume with her (my soncouldn’t bear to look!). We started travellingagain; Lanzarote for 10 days in May andthen Canada and Alaska in June, a belated60th birthday treat for my darling wife. Andmy appetite has returned!

I think I have been lucky. Care in thehospital was very good, I didn’t needchemotherapy and my first six month scancame back all clear. Life has returned tonear normal and whilst there are occasionalaccidents with the bag, they are few and farbetween and we cope with them withoutthe dramas of the early days. Bag emptyingand bag changing are simply parts of theusual routine. With a little thought andpreparation there is very little I can’t do. Wehave joined the local support group,Stevenage Ostomistics, and it is supportiveto meet other people in the same situationat our monthly meetings or at the pub forour petanque sessions.

The bag is just a bit of a nuisance. Isometimes call my stoma: “that bloodything”. My wife more accurately calls it: “ourlife saver”. She is right and life is just greatagain. n

Chris Lewis

Life after all

On holiday in Canada, June 2015

C A N E W S F R O M T H E O F F I C E

8 | T I D I N G S | W I N T E R 2 0 1 6 | 2 4 H O U R H E L P L I N E : 0 8 0 0 3 2 8 4 2 5 7| H E L P L I N E : 0 8 0 0 3 2 8 4 2 5 7

On Saturday 3rd October 2015, dozens ofsupporters, individuals and businessesacross the country helped fight the stomastigma by going purple for our annualColostomy Day.

It is estimated that over 120,000 people inthe UK of all ages currently live with astoma, and for many it can be an isolatingand challenging condition. Colostomy Daywas created to compliment World OstomyDay to put a spotlight on the issues thatmany people living with an ostomy faceeach day.

Launched in 2014, Colostomy Day rapidlygrew last year with more individuals andbusinesses from across the country takingpart. Independent businesses in Readingwent purple by baking purple cakes,dressing in purple and selling purple soup.Olympic rowers trained on the RiverThames wearing Colostomy AssociationT–shirts, runners wore purple tutus, theteam at SecuriCare had a purple dress downday, nurses at Royal Berkshire Hospital helda cake sale, a bowls tournament was heldin Derby and a postman in Crawley did hisrounds in a lady’s purple outfit and wig.

Speaking about our 2015 Colostomy Day,Marketing Communications Officer for theColostomy Association, Niall Norbury said:

“It was fantastic to see so manypeople across the country help fightthe stigma of having a stoma for ourColostomy Day.

“An ostomy is an invisible conditionso it is vital that organisations suchas the Colostomy Day continue tohighlight the challenges that manypeople with a stoma face. In 2015,we encouraged people to go purpleand in 2016 expect anotherattention–grabbing way of highlightingwhy we must continue to raiseawareness.”

Building on the success of last year’sAwareness Day, preparations are alreadyunder way for this year so please try to keepSaturday 1 October 2016 free if you’d liketo get involved.

Colostomy Day2015

SHEDWhat they did: Baked a purple cake and aspecial purple soup.

Quote: “We’ve never been asked to make apurple soup before or a purple cake for thatmatter, what a great way to raise awarenessof a sensitive issue.”

EMMA BOYCEWhat they did: Ran 5k in purple sunglassesand tutus.

Quote: “It was an enjoyable day and I’mreally looking to having my daughter Bethtake part next year.”

TIM SMITHWhat they did: Held a charity bowlstournament in Nottingham.

Quote: “The game was played with greatspirit and everyone was happy to spend a

Saturday afternoon doing their bit to helpraise awareness and funds for theAssociation. A great fun afternoon was hadby all and a good amount of money wasalso raised. This tournament is set tocontinue I am sure, so we look forward tothe next one – same time same place as itwere.”

NIBSY’SWhat they did: Baked special purplegluten-free cakes.

Quote: “Simply - It was a pleasure to takepart in the awareness day.”

STEVEN AXFORDWhat he did: His round as a postman in apurple outfit and purple wig.

Quote: “It was really fun and I thoroughlyenjoyed making everyone laugh and smile.If anything, I expected everyone to look andlaugh. Instead, customers on my round toldme stories about their friends and relativeswho also had a colostomy.” n



Commemorating 10 years as an independent charity, 2015 wasa period of reflection, contemplation and celebration for all ofus that are involved with the Colostomy Association. However,it was also a year of transformation as our charity preparesitself for the challenges and opportunities for the next decade.

2016 will see the launch of several new initiatives as well asimprovements and advancements in our existing services. In linewith our new five year strategic plan, we plan to launch:

l Stoma Aid, a service that aims to distribute unwantedsupplies to developing countries, is closer than ever toreaching its fundraising goal. The Colostomy Associationfrequently receives enquiries from supporters on how theycan ethically dispose of their unneeded supplies followingthe loss of a loved one, reversal or change in stoma size. In2016, we hope to provide the solution.

l New initiatives such as our Caring for Colostomates andActive Ostomates pilot projects, which will improve thequality of life for many people living with a stoma.

l Campaigns that will enable us to become a louder andstronger voice for the ostomy community.

l A new website; a much–needed update.

There are even more plans in the pipeline that we can’t wait toshare with you in the coming year.

Last year we celebrated 10 years of the Colostomy Association,but the original roots of the charity stretch back to 1967 with theformation of the Colostomy Welfare Group (CWG). The purpose ofthe CWG was to provide a free service ‘to relieve suffering byproviding, throughout Great Britain and Northern Ireland, a welfareservice for patents who have had or are about to undergocolostomy surgery’. A special event is being planned in 2017 tocelebrate our 50th anniversary to acknowledge that we have beenhelping ostomates since 1967 and details will be announced laterin 2016.

As our charity continues to grow and develop, our vision andpurpose remain unchanged. The Colostomy Association iscommitted to creating a society where having a stoma is no barrierto living a full and active life. Looking ahead beyond 2016, we arein a better position to achieve this goal than ever before and I lookforward to being part of this journey.

Ian Daniels FRCSPresident

Colostomy Association

It is hard to imagine that the Colostomy Association might nothave existed. After funding for the British ColostomyAssociation was withdrawn by Macmillan just over 10 yearsago, it was only due to the incredible passion of a small groupof volunteers that the Colostomy Association was formed.

From those small beginnings, the Colostomy Association hasgrown into the UK’s largest stoma charity that supports over 21,000people across the country. In 2015 we celebrated our 10thanniversary. Our hugely successful weekend event captured thevalues and purpose of the Colostomy Association: a commitmentto providing support and the courage to champion the rights ofeveryone living with a stoma in the UK.

The past year has seen us develop new products, services andinitiatives. Our Pouch Craft competition has helped children learnabout stomas in a friendly and accessible manner, while fundraisingfor Stoma Aid continues, our new helpline for parents (JOSH)officially launched at the beginning of the year and our secondColostomy Day proved even more popular.

Our charity has adapted to changing times by improving our digitalpresence; the launch of our monthly e-newsletter, an active presenceon social media, improved online links and a surge in membershipof our closed Facebook group. It has also been a period of significantgrowth with the highest level of supporters in our history, so we havebeen supporting more people than ever before.

Our team of staff has expanded which has enabled us to improveour marketing, fundraising and range of products. As a result ofthese appointments we have seen growth in publicity, a rise in thenumber of fundraisers and the launch of our online shop.

We have also become members of the ‘Delphi Games’ run by theAssociation of Coloproctology of Great Britain and Ireland. TheGames will help influence research on various bowel diseases.

The scope of the Colostomy Association cannot be understated.Despite only having a team of six full–time members of staff weare able to act as a vital lifeline for thousands of people living witha stoma.

Thankfully, 10 years ago, a team of passionate and committedvolunteers decided that they couldn’t afford to lose a supportcharity for people living with a colostomy. Looking back at whatwe’ve achieved in the past decade and in the past year, I believewe can make those key people feel immensely proud.

Monty TaylorChairman of the Trustees

Colostomy Association

Message

from our ChairmanMessage

from our President

PROBLEM HYDROSOLVED

Toilets loveour new wipes

New LBF® and Appeel® HydrosolveTM Flushable Wipes, featuring Hydrosolve dispersible technology, are as effective at protecting delicate skin & removing adhesive stoma appliances as our standard wipes - with the added advantage of fl ushability. These wipes break down completely on contact with water, which means you’re completely free to fl ush and go.

I understand that this request will be handled by CliniMed Limited or SecuriCare (Medical) Limited. I would like my details to be kept on fi le, so that I can be kept up to date with informationabout relevant new products and services.

For a free sample please complete the coupon and return it to: Freepost RTJG-ZZCJ-JAYS, CliniMed Ltd, Cavell House, Knaves Beech Industrial Estate, Knaves Beech Way, Loudwater, High Wycombe, HP10 9QY (NO STAMP REQUIRED), call our free confi dential CliniMed Careline 0800 036 0100 or visit www.clinimed.co.uk/Hydrosolve.aspx

I would like to try: LBF Hydrosolve Flushable Barrier Film Wipes Appeel Hydrosolve Flushable Medical Adhesive Remover Wipes

Mr/Mrs/Ms: Initials: Surname: Address:

Postcode:

Tel. No.: Email:

Appeel® and LBF® HydrosolveTM Flushable Wipes are available on prescription.Appeel®, LBF®, HydrosolveTM and CliniMed® are trademarks of CliniMed (Holdings) Ltd. CliniMed Ltd, a company registered in England number 01646927. Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks. HP10 9QY. ©2015 CliniMed Ltd. PID 1742

| W E B S I T E : W W W . C O L O S TO M YA S S O C I AT I O N . O R G . U K T I D I N G S | W I N T E R 2 0 1 6 | 1 1

We’ve all done it – gone on holiday andcome back with souvenirs. Some areones we like to keep, others we regret.However, following my recent trip toKefalonia I brought back something Idefinitely did not want – Campylobacter!

Tummy upsets on holiday happen now andthen and we just have to cope with them,with the aid of drainable bags with,hopefully, not too many missed sunny days.

My husband, Chris, and I had enjoyed awonderful two week holiday in beautifulKefalonia. We had enjoyed all our meals,tried the local dishes and seafood with noill effects at all. As soon as we exited theairport on our return – on a bitterly coldevening at the end of May – I felt very coldand shook with shivering for a couple ofhours. After a quick unpack I got to bed andfelt queasy during the night. The nextmorning the diarrhoea started.

Initially I thought it was a chill on mytummy but I did not feel well at all withtummy cramps as well. This went on forfour days and on the fifth I felt better, butstill there was no respite from thediarrhoea, I had not had any sickness so feltit could not really be food poisoning.

With any diarrhoea etc, the normal adviceis to cut back fibre, keep food simple andeasy to digest and reduce fat including dairyproduce, so my diet was very carbohydratebased. To avoid dairy produce, I used fruitteas and black coffee but had to allow acouple of cups of tea with skimmed milk. Ialso bought some soya milk and used pro-biotic yogurts and drinks. I had bits of fatfree cottage cheese occasionally; I longed

for some proper cheese but that caused areally drastic reaction. Normally I reallyenjoy my vegetables and fruit, so beingdenied those I decided to move away frommy usual Slimming World routine and said,“I shall eat cake”. There had to be somecompensation to make up for thisinconvenience!

Then I decided to visit the doctors – orrather our nurse practitioner in order to geta quick appointment. Her advice waspredictable: “It should work its way outsoon. Continue with your food regime.Keep up the fluids and come back in a fewdays if you’re not better.” So a few days laterI was back again, this time to see a doctor.She said much the same thing, but addedthat if there was no improvement soon theywould do a faecal analysis. So some twoweeks after it had started I submitted asample and a few days later got the result.

Campylobacter bacteria are present inmany foods, most notably chicken, but areusually killed off during cooking. They canoccur in unpasteurised milk or untreatedwater and, occasionally, shell fish andmushrooms as well. Cross contaminationcan also occur from knives, choppingboards etc, so it can make things like saladsvulnerable to the bacteria.

When abroad we are always advised to usebottled water and not to have ice cubes indrinks. This can result in some verygenerous drinks if the barman is used tofilling the glass with ice and then toppingup with spirits and therefore does not knowwhen to stop pouring from the bottle! Weare also warned about salads but I amafraid I did not heed this advice so maybe

that was my downfall – but how can onego to Greece and not enjoy a Greek salad?

Campylobacter, which develops anythingfrom two to five days after contracting thebacteria, is a notifiable condition. Yourdoctor is required by law to report this andthe Environmental Health Office wouldthen investigate any premises where youhad eaten. Of course if that is overseas theywould probably not contact you and Ihaven’t heard from them at all.

I am glad to say the problem graduallyimproved but in all it lasted about five weeksoff and on. Apart from the first few days I didnot feel ill and it became evident that fats indairy products would cause a brief episodeof diarrhoea a few hours after eating. Chrisdid not experience any problems at all,despite us nearly always having a taste oreven sharing each other’s meals.

I love travelling and enjoy foreign food anddon’t intend to restrict either because I amworried about what one might pick up – itis just the luck of the draw when one iseating out, either abroad or in England, forthat matter.

All I can say is that if one has a tummyupset and it goes on for longer than fivedays then visit the doctor.

I have since enjoyed another overseasbreak with no ill effects. So enjoy your foodon holiday; you know what sort is best foryou. Personally, I don’t worry too muchabout the ‘what ifs’ but will reinforce the noice-cubes rule in future!

Cheers!

Moira Hammond

(and tummyupsets)

R E A L L I V E S M O I R A H A M M O N D

Your chance to win upto £25,000 and support

Win up to £25,000 with UnityUnity is a lottery with a difference. We receive incomedirectly from the number of lottery players we recruit,so we need your support. For every £1 entry – 50pcomes directly to the Colostomy Association.

How it worksFor just £1 per week you will be allocated a six digit

Unity lottery number. You can purchase more than oneentry if you wish. Every Saturday, the lucky winnersare selected at random and the prize cheques posteddirectly to you, so there is no need for you to claim.You must be 16 or over to enter.Winners have to match 3, 4, 5 or all 6 digits of thewinning number in the correct place in the sequence.

How to join – three easy stepsStep one – Complete your personal details - so that

we can contact you if you win.

Step two – Select the number of Unity lotteryentries you wish to purchase per week and how oftenyou wish to play.

Step three – Complete the direct debitinstruction or enclose a cheque. Detach the

form, put it into an envelope and return to Unityto the address shown on the right panel.

Unity will notify you of your Unity lottery number.

If you have any queries please call our hotline on

0370 050 9240Results & Rules can be checked by visiting

www.unitylottery.co.ukOr by phoning the Unity winners hotline

0370 055 2291

Calls cost no more than calls togeographic numbers 01 or 02.You must be 16 or over to enter.

Prizes

50pfrom every £1 goes toColostomy Association

The Unity Lottery, Freepost RLZR - GSYJ - KSZA, Barrow-in-Furness | T: 0370 050 9240 | E: [email protected] is operated by Sterling Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the Gambling Act 2005 – www.gamblingcommission.gov.uk

The

pro

mot

er o

f thi

s U

nity

lotte

ry is

Col

osto

my

Ass

ocia

tion,

Ent

erpr

ise

Hou

se, 9

5 Lo

ndon

Str

eet,

Rea

ding

, RG

1 4Q

A |

Reg

istr

atio

n nu

mbe

r: L

OT

0001

41

£53 digits

£254 digits

£1,0005 digits

£25,0006 digits

Title:

1. Your details (please print in block capitals) 2. Payment Frequency

Surname:

Address:

Postcode:

Tel: Mobile:

D.O.B.: If you would like to receivecorrespondence via email, please tick here

How many entries would you like each week?

How often do you

want to pay?

(please tick

payment

frequency & write

amount in box)

Monthly/£4.34Direct Debit only

Every 13 wks/£13

Every 26 wks/£26

Every 52 wks/£52

Total Payable

If you do not wish your name to be publicised if you win,please tick here

Email:

x

=

First Name:

3. Select your Payment method

To: The Manager: Bank/Building Society

Address:

Postcode:

Branch Sort Code:

Please fill in the form and return to UnityName and full postal address of your Bank or Building Society.

Bank/Building Societyaccount number

Name(s) of Account Holder(s)

Signature:

Date:

4. Your consent to Play (I confirm I am 16 or over and resident of GB)

Surname:

Detach the form, put it into an envelope and return

to Unity to the address shown on the right.

They will notify you of your Unity lottery number.

Post this form to: Freepost RLZR-GSYJ-KSZAThe Unity LotteryFurness GatePeter Green WayFurness Business ParkBARROW-IN-FURNESSLA14 2PE

Date:

For office use only:

Instruction to your Bank or Building SocietyPlease pay Unity from the account detailed in this instructionsubject to the safeguards assured by the Direct DebitGuarantee. I understand that this instruction may remain withUnity and, if so, details will be passed electronically to myBank/Building Society.

Banks and Building Societies may notaccept Direct Debit instructions for sometypes of accounts.

Instruction to your Bank or BuildingSociety to pay by Direct Debit

DD15

Occasionally, Colostomy Association may send you samplesand information that may be of interest to you. We do not pass onyour details but may use them to keep you informed of what elseis available. If you would prefer not to receive these, please tickthe box.

Payment by Cheque

Direct Debit

201124

I enclose a Cheque made payable to Unity (minimum payment £13)

Service User Number

Reference:

You will no doubt change or empty yourpouch before you leave home, so it willonly be occasionally that it is necessaryto change a pouch while out and about.It is important, however, to be preparedand make sure you have everything youneed to change your pouch with you, justin case.

What to take with youl A spare pouch, the hole in the flange

already cut to the right size.

(It’s unlikely you’ll need to changemore than once but if you include adrainable bag as well you’ll beprepared for all eventualities.)

l Any additional products you normallyuse ie adhesive remover, skin barrieretc.

l Wet wipes or a sachet of ostomycleansing gel.

l Disposal bags.

l Deodorant spray.

All this can be carried quite discretely in apocket, or in a handbag inside a zipcompartment or a small make–up bag. And

it needn’t take up too much space asadhesive remover and skin barrier areavailable as individually wrapped wipes andsome manufacturers produce refillablemini, sample–size deodorant sprays.

If you find you rarely need to use youremergency kit, it is a good idea to check itover every few months and replace any ofthe contents with fresh supplies.

Where to changeBecause you have a stoma you are entitledto use Accessible Toilets. This makes theprocess easier as there is more space, anda wash basin and running water at hand.There is also always a bin where you candispose of the used pouch. If you areunsure where to find an accessible toilet,head for the nearest large supermarket orMcDonalds. Here these toilets are rarelylocked. However, at other places you mayfind you need a RADAR key to gain access.These keys are available free from somelocal authorities or you can obtain one fromthe Colostomy Association (see formbelow). We can also supply a photo ID card,which confirms you are entitled to use

these facilities, in case you are challengedwhen entering or leaving the toilet.

It is, however, important to be prepared incase there is no accessible toilet nearby. Apouch change is possible in an ordinarytoilet cubicle if you have some means ofcleaning around the stoma. Wet wipes orcleansing gels which come in single usesachets are available from some ostomymanufacturers. The gel is squeezed out ofthe sachet on to a piece of toilet paperwhich is used to wipe around the stoma –wipe off the excess and allow the skin todry before applying a clean pouch to makesure you get a good seal.

Disposing of the usedpouchLadies can dispose of the used pouch in asanitary bin. Men may find it best to use anaccessible toilet as there is not always a binavailable in Gents’ toilets. The ColostomyAssociation is, however, currently workingwith other organisations to help improvetoilet provisions across the country forostomates. To find out more, read Stoma

Friendly Society on page 31. n

A Guide for New OstomatesChanging your pouch away from home

L I V I N G W I T H A S TO M A F R O M O U R R E A D E R S


National Key Scheme (NKS) Radar Key and Photo Identity Card

To obtain a key or a photo identity card please completethe form and declaration. Make your cheque payable tothe Colostomy Association. Return all required items to:Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

(If you have any queries please contact the admin team at the Colostomy Association office via the followingmethods:

Telephone: 0118 939 1537 or Email: [email protected])

National Key Scheme - Key and photo ID card purchase

Title:

Name:

Address:

Postcode:

Tel:

Email:

DECLARATION: I declare that the individual named above ischronically sick, has a disabling condition or has had a bowelor bladder diversion that necessitates the use of disabledtoilet facilities. The key is for the personal use of the abovenamed and their designated carer only.

Please tick as appropriate:

I would like to receive a key for a charge of£3.50 (including postage and packing).

I would also like to receive a photo ID cardfor a charge of £6.50 (including postageand packing) and enclose a passportphotograph.

NOTE: Please send a copy of yourprescription/recent delivery note asproof of eligibility and make thecheque payable to: ColostomyAssociation.

Signature of self or carer: Date: / /2015

Photo ID CardThe Colostomy Associationphoto ID card is proving verypopular as it can be useful ifchallenged when entering orexiting accessible toilet facilities.

If you would like to apply for aPhoto ID card, please completethe form opposite and return it tothe Colostomy Association forprocessing with the variousenclosures listed below:

• A copy of your prescriptionor delivery note as proof ofeligibility

• Passport photo x 1

• Payment – cheque

Note: Payment can be taken overthe telephone if preferred.

Alternatively, the form can bedownloaded from our website:www.colostomyassociation.org.uk

Please allow 10-14 days fordelivery – thank you

Plea

se c

ut a

long

the

dott

ed li

ne a

nd r

etur

n to

the

addr

ess

on th

is fo

rm -

than

k yo

u

#

1 4 | T I D I N G S | W I N T E R 2 0 1 6 | 2 4 H O U R H E L P L I N E : 0 8 0 0 3 2 8 4 2 5 7

Peggy Farley

My story began a long time ago, in 1974,when we were involved in a terrible caraccident on the M4. Thankfully myhusband and three sons escaped withminor cuts and bruises. However, I wasbadly injured and spent two weeks on aventilator in hospital. Once I was out ofITU and on a normal ward I noticed thateverything I ate just wouldn’t stay put,and when I enquired why my system wasso upset I was told it was due to thetrauma of the accident.

It took a year for me to recover with furthertreatments, but unfortunately I still had theproblem of food passing through my bodytoo quickly, and over the next few monthsit became steadily worse despite thevarious medicines prescribed. I eventuallywent to see a gastroenterologist who, aftervarious examinations, diagnosed mycondition as severe Irritable BowelSyndrome (IBS).

My other problem was the fact that I’d hadthree very difficult childbirths which resultedin extensive internal stitching. I waseventually sent for various tests, and wastold that my sphincter muscles weredamaged and nothing could be done torectify this situation. The gastroenterologisteventually said that I really ought to think ofhaving a colostomy, as severe IBS with theabsence of sphincter muscles just didn’tmake for a happy lifestyle. Of course he wasquite right, but the thought of having acolostomy frankly horrified me, and so Idecided to soldier on. Over the next fewyears I found my eating habits were minimalbecause my tummy would not accept agreat many things. My diet was veryrestricted and if I was going anywhere I knewthat I always had to have a loo in sight.

In 2005 I decided that after 30 years I justcould not cope any longer, and went intohospital to have a colostomy. Of course itdid not cure the IBS problem but at least Icould go places, and join in outdoor bowlsmatches without wondering if disasterwould strike. I didn’t have many good dayscoping with the IBS and about five yearsago started to have attacks of extremestomach cramps followed by continual andsevere bouts of diarrhoea. These attacks leftme feeling exhausted, but nothing in theway of medicines helped and I couldn’ttrace it to any particular food in my meagrediet. I was just told it was part and parcel ofmy extreme form of IBS.

Two years ago I came across an article inTidings which gave glowing accounts ofcolostomates who had successfully irrigatedwhich aroused my interest. Because of theIBS problems I had tried everything I couldthink of to make life better, but I hadn’t triedirrigation and decided that it was worthhaving a go. I went up to my local hospitalone afternoon, with hope in my heart thata miracle could occur, and met up with twocaring stoma nurses who spent a long timetaking me through the procedure.Unfortunately the water that should haveentered my colon seemed very reluctant todo so and only one attempt was partiallysuccessful. However, it was decided that Ishould go home and give it a real try whichI did. Over the next week I struggled andonly once did I manage to get my colon toaccept the required amount of water – infact most times I had more on the floorthan inside me; it was so frustrating. At theend of ten days I decided that irrigation justwasn’t possible for me and I reluctantlytook all the gear back to the stoma clinic asI just couldn’t face sitting on the loo forwhat seemed like hours every day withoutany result.

A year later In November 2014 I went intohospital for a parastomal hernia repair.Although the operation went well therewere several weeks when I had bouts ofcontinual stomach cramps and almostuncontrollable diarrhoea. It got to a pointwhen I wished I had left the hernia alone.Ironically, although I didn’t know it at thetime, that operation changed my life.

At a subsequent appointment my surgeontold me that he’d had to take away aboutnine inches of colon during the operationas I had a large kink in it, which of course Ihadn’t known about. Over the next twoweeks I thought about the kink factor andfinally approached the same stoma nurse atthe hospital and said I thought I knew whythe irrigation did not work the first time andasked if I could have another try. Sheagreed that the kink could have been thesource of the trouble and so I went up tothe stoma clinic to go through theperformance again. Although it was hit andmiss to begin with, eventually all therequired amount of water went in andirrigation worked.

Although once I was at home I was fearfulthat it just wouldn’t work, it has been asuccess every morning since. I sit on theloo and watch with amazement the waterlevel in the container quite rapidly reducinguntil the 1000ml level is reached. What wasimpossible the first time around is sosimple now.

The benefit of irrigation has been two–foldfor I can now eat food which before I wouldnot even dare to look at. Because my colonis empty over the whole day I have nowexpanded my diet, and have been able toeat things like a salad meal and homemadecottage pie. Hopefully now I won’t be a two

meal cook, but I will be able to enjoy thelovely looking evening meals I have cookedfor my husband all the time.

Irrigation does mean that I lose an hour ofeach day, although I am hopeful of reducingthat time scale in due course, but thebenefits are enormous. It is so comfortablejust being able to wear a small cap all dayinstead of a bag and it is so much morehygienic as well. I would recommendanyone with severe IBS problems to have ago – for me it has definitely been a lifechanger, and it could be for you as well.

Before attempting to irrigate it isimportant to consult your stoma carenurse to check that this form of colostomymanagement is suitable for you.

For more information on irrigation seepage 23.

R E A L L I V E S A B E T T E R Q U A L I T Y O F L I F E

R E A L L I V E S A B E T T E R Q U A L I T Y O F L I F E

Two readers whose colostomy was formed, not to save their lives, but toimprove their quality of life tell their stories. For many years both sufferedfrom IBS and incontinence due to childbirth damage. They eventuallydecided to have a stoma and now manage their colostomy by irrigation.

A BetterQuality of Life

Carole Summer

For most of my adult life I have sufferedfrom Irritable Bowel Syndrome (IBS). My GPprescribed Fibrogel and similar bulkingagents but these simply increased myoutput and made matters worse. I was alsosuffering from an irritable bladder so youcan imagine that I needed to know wherethe toilets were whenever I went out.Having had two children did not help as Itore badly during their birth and had lots ofstitches. Eventually I had to wearincontinence pads which I hated.

My GP sent me to see a consultant aboutmy bladder. He was so understanding andkind to me that I felt able to tell him that Ihad faecal incontinence as well and he gaveme the name of another consultant who hefelt sure would be able to help me. I wasfortunate enough to have private medicalinsurance so made an appointment straightaway. The consultant, Miss Karen Nugent,said I did not have any control over themuscles in my back passage, and suggesteda colostomy but I said no, I could not bearthat.

Then I went on holiday to Spain and had avery bad ‘accident’; I had to hide in somehedges whilst my friend went back to thehotel to get me a change of clothing. Onreturning from the holiday I went back to

the hospital and an experimentaltreatment called Sacral Nerve Stimulationwas suggested. I was one of the first tohave this implant at my local NHS hospital.Following the surgery and just one night inhospital I was sent home with this gadgetto try and control my bowels. I had to keepa chart of my output both before and afterthe surgery to compare the effectiveness.

After several weeks I went back to see MissNugent who was delighted with the resultand, although I was not so impressed, Iagreed to go ahead and have a permanentimplant. However, while I waited for theNHS to give their funding it got to the stagethat I could not even walk my dog withouthaving an accident as any form of exercisewould stimulate my bowel to work. Then Iheard about irrigation and finally decidedthat if I could do that then I would agreeto have a colostomy. I really could notbelieve that I had agreed to something solife changing.

When I got home after my colostomyoperation I still had IBS. The output frommy stoma was constant. My skin becamevery sore and I also had accidents at night.The stoma nurse came to show me how toirrigate. Irrigation was my saviour: doingthis for about half an hour every other daymeant that I had very little output. I alsohave six-monthly Botox injections into mybladder which has helped my urinaryincontinence.

My life has changed completely: no moreincontinence pants and accidents, I wasable to have my life back. That was tenyears ago and I am so glad to have beengiven ‘George’. I cannot imagine lifewithout him.

What is IrritableBowel Syndrome?Irritable Bowel Syndrome (IBS) is thename health professionals give to a seriesof symptoms relating to a disturbance ofthe large bowel that cannot be explainedby any other disease.

Symptoms of IBS can include:• Abdominal cramps – often relieved

by emptying the bowels

• Change in bowel habit; eitherdiarrhoea or constipation or analternating pattern

• Bloating and swollen abdomen

• An urgent need to go to the toilet

• A feeling of incomplete bowelevacuation

• Gurgling noises in stomach area

• Excessive wind

• Passing mucus from your backpassage

People with IBS can also experience avariety of other unexplained symptomsincluding tiredness, backache, bladderfrequency, indigestion, headaches,depression and anxiety.

What are the Causes of IBS?There is no definitive cause of IBS but thebowel is often more sensitive and reactiveto changes in food and mood. Factors thatseem to make the gut more sensitiveinclude troubling life events or situationsand a bout of gastroenteritis. Symptomsof IBS are often triggered by a meal, butonly very rarely due to a specific foodallergy.

Diagnosis and ManagementIBS should always be diagnosed by ahealthcare professional, who will screenfor other conditions that may give thesame symptoms. They will often prescribemedications to reduce abdominal spasmand regulate the bowels.

Reproduced with permission of theBladder & Bowel Foundationwww.bladderandbowelfoundation.org

IBS (Irritable Bowel Syndrome) shouldnot be confused with IBD (InflammatoryBowel Disease) which includes Crohn’sdisease and ulcerative colitis, conditionswhere irrigation cannot be used forcolostomy management.


WNE

+

+

+

+

+

REEFFR

+

+

WNOavailable


R E A L L I V E S PAT H W AY TO A C O L O S TO M Y

Colostomy Association volunteer, Mike,writes about how diverticular disease ledto a ruptured bowel and an emergencyHartmann’s procedure to form acolostomy.

It all started in the summer of 1999 whenmy wife, Pam, and I were on holiday inNorthumberland. While we were away Iwas severely constipated but I put thisdown to the change in diet etc. When wereturned home I was more or less back tonormal so I didn’t worry about it unduly.Several weeks later I had abdominal painson and off for several days which, despitetaking indigestion remedies, failed to goaway. As it was a Friday I decided to gohome from work early and that I’d be betterafter a restful weekend.

Sadly this was not to be; by Sundayafternoon I was in agony, trying to ease thepain with warm water sitting in the shower.In hindsight this was a waste of time andlater that evening when I began vomitingPam insisted on calling the Out of Hoursdoctor. When he turned up at aboutmidnight it didn’t take him long to decide Ineeded to go to hospital. On a lighter note,our cat, Tigger, sensed I was not well andstayed curled up on my bed while thedoctor examined me, but hastily fleddownstairs when the ambulance came forme an hour later!

After an X–ray and an ultrasound scan atthe Good Hope Hospital I was told that Iprobably had a burst bowel which theywould fix with an urgent operation. Theconsultant told me that the worst scenariowould be ending up with a colostomy bag.I had only a vague idea of what this meant.I saw a bag for the first time when I cameround from the anaesthetic and cautiouslylooked under the bedclothes. There werelots of tubes stuck into my body and a large

bag on my left side. I didn’t like the look ofit but was assured that this was a post–opbag, different from what I would wear in thefuture.

I was told I had diverticulitis and thetechnical term for my operation was aHartmann’s procedure. I remained inhospital for about two and a half weeks andduring that time I was shown very basicallyhow to change my own bag. I rememberbeing told before I left hospital that when Iwas fully recovered I would be able to goswimming, horse riding, skiing andhang–gliding. I thought this will be great funand remarkable as I couldn’t do any ofthese things before!

When I returned home it was a steeplearning curve, but with the love andsupport of Pam and my son and daughter Iwent from strength to strength. It wasduring this time that I had my firstexperience of a discharge from my rectum.I was a bit alarmed as it was dark in colourand thought – silly in hindsight – that theinternal connection hadn’t been donecorrectly. My surgeon, however, reassuredme that this was a normal post–operativeoccurrence due to blood residue etc. leftinside and it would disappear in a few days,which of course it did. The stoma carenurses explained that I may also get a rectaldischarge of clear or putty–coloured mucus;the production of mucus is a natural bodyfunction to lubricate the bowel. Sheencouraged me to do pelvic floor exercisesto strengthen the appropriate muscles tocontrol any discharge from the rectum.

I was able to return to work after about sixweeks; part time was possible as I workedin the family’s small wood turning businessand could go home when I had doneenough. I was able to increase my hoursuntil I was back on full time, doing pretty

much everything I did before, both at workand socially. I was spurred on to return tonormal in time to give away my daughter ather wedding in 2001.

There was a suggestion of having my stomareversed in the future but I wasn’t temptedfor two reasons. Firstly, while on holidaybefore my operation, Pam and I had met aman in his forties who was due to have areversal when he returned home. A yearlater Pam bumped into his wife in townand, on enquiring how her husband was,she was told that the operation had notbeen as successful as they had hoped.Secondly, I was back at work, had resumedmy hobbies and I was used to wearing abag and didn’t fancy another operation andrecovery period again.

I must have been given the BritishColostomy Association (BCA) contactdetails when I left hospital as four or fiveyears later I attended an Open Day inWalsall. There I met a lovely lady calledJackie Dudley who, after chatting to Pamand I, asked me if I would considerbecoming a volunteer for BCA. I was veryflattered to be considered suitable, but a bithesitant. With some encouragement fromPam, however, I took the plunge.

After the usual checks and paperwork, Iattended a volunteer training session andwent on to help out at an Open Day. ThenI was given a stand and a supply of leafletsetc and did my first Open Day on my own.From then on I haven’t looked back andhave enjoyed it all; meeting differentpeople of all ages. Helped by the wonderfulstaff at the Colostomy Association inReading, I will continue to be a volunteerfor as long as I am able.

Mike

Pathway to a Colostomy

owelttFi

epsDi

htro emHognisne ecvireS

teercsiDaotreilDe

inevno, CtmorfsserddaKUna

baile, RtnelordnamotsO

; kees a wyamm - 8 p8 a

m1 p

leb

r – evoy Ccneg

e sruy ngoe divoro pe tlba

troppus

ao ty revilDeeCe raC8 3ylm PorK fU

dron acu oYYo, bsyan 4 wi

el rlar cedro

c PinortcelE

m orfss erddaK Uy nae htt uohguorhts ertnehgrubnido Eh ttuomy

htrowelttiFh guorhtr e, enohy p, btsoy pbenilnd onr aednime

d nn aoitpircserP

n 6 depe ore aWy adiry - FadnoM

m - y 9 aadrutaS

grems EaesrevO

lord uny amotsOaliavts asilaiceps

d sne acivde aerf

Freephone National:eonhepreF :dlantocS

648 870 30804183 70 7080

pe civren soitcellon coitpircserp

Pr Guom yorf

684

gaillt Asissd AlroW

ygecna

6110ngsidiT


We’re extremely grateful to a number ofpeople who have broken the pain barrierto raise funds for the ColostomyAssociation in the last few months:

v In August 2015, Ian Scott swam, cycledand ran his way through the LondonTriathlon and raised a fantastic £805.

v In September, Stuart Vannet cycled 110miles as part of the Pedal for Scotlandevent and managed to raise £665. Alsoin September, Sharon Burton ran theWorcester 10k and raised £593.

v October saw Iwai Simon (below)complete the Birmingham half marathonand raise £392.

Iwai Simon was motivated to run to raisefunds for the Colostomy Associationafter seeing first hand how having astoma can be daunting to both familyand friends.

Ordinary people doingextraordinary things

v Smurfits Unchained featured in the lastedition of Tidings as they prepared totackle the London to Brighton Bikechallenge. We are glad to be able toreport that the team of Ian Jackson, NigelGoodger, Dave Paxman, and DuncanTaylor managed to raise a whopping£2,362!

Climb every mountainRunning or swimming 1,000 metres couldbe a fundraising challenge in its own right,but Sarah Gregory and Liam Gregory havedecided that’s not enough.

In August 2016 they will be attempting toclimb the 1,344 metres that will see themreach the summit of Ben Nevis. They havealready started training three times a weekand the commitment levels will only rise asthe event gets closer. We’ll keep youupdated on their progress, but moreinformation can be found at:

www.justgiving.com/Sarah-Humphrey8

Knitted DelightsMargaret Whyte from Breaston in Derbyshire (pictured below) raised £168 from thesales of cuddly toys that she knitted herself!Margaret spent nearly six months makingthem all and the result was that every oneof them was sold at the St Michaels churchcraft fair. Fantastic!

Special thanksEvery year hundreds of people donate orraise funds for the ColostomyAssociation and while we can’t publicallyacknowledge everyone we would like tosay a special thank you to a few otherpeople in this edition:

v David & Sandra Priestley donated £125,the winning proceeds from their localpub quiz in Kent.

v Ruth Gardner raised £150 from a coffeemorning in Birmingham.

CONTINUED ON PAGE 21, COLUMN 3

F U N D R A I S I N G W E N E E D Y O U R H E L P

Fundraising FocusAll of us at the Colostomy Association are constantly surprised and humbled by the various ways our supporters fundraise forus. As an independent Charity, every penny raised helps fund our work supporting ostomates across the UK and raising awarenessof life with a stoma.

We need YOU! Fundraising is an immensely importantsource of income for the Colostomy Association aswe rely heavily on donations. Help us continue toprovide support to ostomates and their families24 hours a day, 365 days a year.

DonationsWhen sending your

donations please

don’t forget to include

your contact details.

Thank you!

DIS

f%OOf

ern

2er

ve

Or OTTid

ve 20%20ffe

r

OOfid eid

ings

a

gO

SavSSaReader

STEMYSAL SSPO

apacitycre bin ailable in avare

liner incpreinstaFREE

cludedalled

avas kpacTriple line

9, 16, and 26 LitrBins a

ilabler

omer Services on 01730 895761tusCalling cor by o.uk cals.casrt cheekyao order online tailable vAAv

aditional bin

ve 20% aS

ro ttvert noc- Can terialsaable high-quality mrom dur- Made f

ap helps keep odours inr- Spring-loaded tstemyop sr- Hygienic step-and-d

U

ou spend £40ywhen

ode:cse U

TID

N 6991E CNITS SRY EXPERSER


CONTINUED FROM PAGE 19, COLUMN 3

Many thanks to all of you for your fantasticefforts to both raise funds for and spreadawareness of the Colostomy Associationthroughout the United Kingdom. Manythanks also to everyone else who hasdonated and is not mentioned here.

Unity LotteryThe Unity Lottery has replaced theColostomy Association 500 club, andwe’re pleased to say there’s already been aColostomy Association winner.

You can win up to £25,000 every week, withthe chance to claim many other cash prizesas well! For more information on how tojoin see Page 12.

Not only does the winner receive the maincash prize, an additional donation of £2,500goes to the charity you’re supporting!!

Grants updateThe Colostomy Association has benefitedfrom a number of recent grants that willhelp us deliver an even better service toadults and children with a stoma, theircarers and family members.

v Sport England have awarded our ActiveOstomates pilot project £3,639

v The Big Lottery Fund have supported ourCaring for Colostomates pilot project tothe tune of £8,824

v The Morrison’s Foundation has awardedus £5,993 towards helping those whocare for people with a stoma.

L–R: Giovanni Cinque,Morrison’s Community Champion, Jo McKenzie

There’ll be more information on our pilotprojects in future editions of Tidings. n

Bloomberg journalist, Kevin Young,walked away with a full–sized canvas ofhis winning photograph (kindlysponsored by Jessops) from last year’sCalendar Competition.

Kevin’s dramatic winning photo was ofRubjerg Knude Lighthouse in Denmark. The2016 Colostomy Association calendarfeatures 12 stunning photos from acrossthe world; ranging from mountaintops inthe Alps to colourful scenes in Turkey.

Speaking about winning the competition,Kevin said: “Thanks so much for thecanvas – it’s beautiful and it’s a real honourto have won!”

Have your photos featuredin our 2017 calendarWe are now looking for entries for our 2017calendar and are searching for stunninglandscape photographs from ostomates’journeys across the world: from exoticsummer breaks to bustling cities and winterholidays to safari scenery.

If you would like a chance of yourphotograph featuring in our 2017 calendarthen please email a digital copy of yourphotograph/s to the eMail address below

no later than 30 April 2016. Make sure youbear in mind our specifications (see the boxbelow) so that your photos will meet theprinting requirements. Of the submissionsreceived in 2015, many other excellentphotographs were received that could havebeen serious contenders. Sadly, these couldnot be considered as they were nottechnically suitable, so please ensure yourphotograph/s meet the required criteriagiven below.

All proceeds from the calendars will gotowards supporting vital ColostomyAssociation services such as our 24–hourhelpline, range of literature, volunteers’attendance at open days, hospital visits andTidings magazine. Send your entries to:

[email protected]

To enter our photographic competitionand be short–listed to feature in our 2017calendar, all photos must meet thefollowing requirements:

l Landscape, not portrait.l High resolution photos, where

photos must be a minimum of5,000 x 5,000 pixels to ensure theyare high enough quality for print.

l All entries must be received by 30April 2016.

Colostomy AssociationCalendar 2017

Colostomy AssociationCalendar 2017

F U N D R A I S I N G W E N E E D Y O U R H E L P

omStperso

, areo

ma conaliseed fo

ou -or y

eRegistmeplusor freep

™or me+er fosfromamc

FRaregc

phone 08000 88

EE ato.uk group.c

8 50 50

AA

ff

A rangand reyou bestoma

A rangand reyou bestoma

ervicege of seto esources d aefore anonoperatio

gege of sererviceesources toefefofore and aopereration

es support fter your

essupportftfterer your

TM

w er noRegisty andeadar kr

e oGuidanc•aour medic y

ormationnfoI•our ster yt aft

dvisNurse A•elephone, S t

r FREE mourormatio

e yeivand recd membership inffo

urther inu

are

o find fn where tonditional c

our coou and/or yor yn fooma and changing the pt

our ou or yor ye fovicsor serTime and emaeype, FacSk

ard,

g g g

aiting cme+ no won pack in the post.

ormation aboutnfo

rs regarding lookingpouch

arer viacail.

y

Thon

medical conditionditionyour toilet facilitie

AITING. Thon

NG.NO WWA

Amcare group comp

™ indicates a trade mark of an

Te© 2015 ConvaTec In .ec Inc

ConvaT™ i diTe

equest.g ntly upon rre

n. Ples ur

n. Please allow them to use

The holder of this carn Pleashgently upon

rg

The h ldd has an Pl rd

.pany

are NurAmc•otland)Sc

chologicyPs•

oestyle infoLife•

y advHolida•

atioPre-oper•

ailable in move avicrse ser

al supportc

ormation

e packvic

ormationon info

cludesxost areas (ex

ou needyes are hese resourcT

y stervou through eyoe, cincluding: advic

y tips videosholida

Help whe

d ito helpdesigned t

are, our cf ytage oontact details,

ey advicQs dietarAF

en

ec Inc. ™© 2015 ConvaTe

facebook

ec goup c™ indicates a trade mark of a ConvaTe

oupegrk.com/amcar @

.company

oupegr@amcar

y tips, videos, holidao other res tand link

e y advicQs, dietarAFAes.esourc

L I V I N G W I T H A S TO M A I R R I G AT I O N


Dawn writes: It was like having a baby;you wake up and there it is, all red in theface with a sort of semblance of a smile,but its not a smile, more like an “oo”.

“Hello,” I said. “You do look a funny lookingthing. I think I shall call you Penelope, youwill be a good little girl won’t you?”

From that moment I became irrevocablyattached to my little Penny. Nothing willever separate us and I shall look after herlike a mum should; she will want fornothing.

Of course I had had some insight of whatto expect from the nurses as I had practicedwith plastic replicas, but the real thing isnowhere near what I expected. At the startPenny developed a bit of a routine andchanging nappies (pouches) was noproblem. It was the irrigation thing thatdidn’t go so well.

I freely admit that as far as mechanics areconcerned I am not the brightest star in theconstellation, but to my mind this lot wouldchallenge Isaac Newton.

So many questions: how much water, whattemperature, how high up should thewaterbag be, which way up should the flowregulator be, which end is off, what do Ihang the water bag on, how do I get the airout of the tubing, how far in do I push thenozzle and how long should I wait forthings to happen?

However, with a little technical supportfrom my ever patient husband and manytelephone calls to the nurses, after a few

weeks of trial and error it all started to cometogether. There were some unfortunateincidents; there had to be didn’t there? Thehook holding a full water bag comingdetached from the wall right in the middleof proceedings, the cone slipping out andsoaking the nether regions et al, not havingthe valve closed when it should be andoften getting myself and the toilet floorcompletely covered in water.

I was even getting a little blase about it all,then Penelope decided to strike and GoodPenny became a very Bad Penny. No longerwas she reliable and regular in her routine.Her moods became erratic andunproductive proceedings became thenorm. The nurses and doctors did their bestby suggesting various changes in diet andmedication, but nothing seemed to work. Idecided that I must be the problem and Iwould have to work it out for myself. So thesaga continues.

The one much appreciated source ofunderstanding and help has been fromfriends among the Colostomy Association.To them I say Thank You with all my heart.

As for Penny Dreadful, if things don’timprove I may even consider sending herback to where she came from! n

To try and address someof Dawn’s questions:When it comes to troubleshooting irrigationissues we can work through the basics butreally have to learn what works for us over

Irrigation and youSarah Squire, Trustee writes: Irrigation is not an exact science. I wish it was – being a researchscientist I went into irrigation looking for an exact protocol to follow which would tell mehow to do the procedure and get the best results. Unfortunately we are all different, withvarying length of colon, different diets and many other factors which make us individual.Dawn Starmer had similar questions to many of us when she began irrigating and explainsher adventures with Penelope the stoma:

time. Dawn had similar questions we heara lot from new irrigators so I thought itmight be good to cover these, as best wecan seeing as we are all different.

l How much water is something almostevery new irrigator will ask. Your stomanurse will give you a guide when theyteach you to irrigate but if things are notworking the tendency is to assume moreis better. This is not always the casethough. Sometimes less water can givebetter results, and more water can leadto output a few hours later. Begin withthe volume suggested by your stomanurse and discuss with them how muchis sensible to adjust that, up or down, ifyou are having difficulties. Personally Ifind after about 500ml I feel “full”, andthat I need a second infusion of a similaramount once the first has expelled, tokeep me clear for 24–hours.

l How warm should the water be?Literature states body temperature of37°C is optimal but do bear in mind thewater may be sitting in the bag for a fewminutes cooling, and anecdotal evidencesuggests that for some people water alittle warmer is better. If it is too cool youmay find you get stomach cramps or thecolon will spit the water straight out. Toohot can of course cause damage to yourcolon so can be dangerous. Someirrigation kits come with a temperaturegauge but if you can comfortably holdyour hand in the water without it feeling



| 2 4 H O U R H E L P L I N E : 0 8 0 0 3 2 8 4 2 5 72 4 | T I D I N G S | W I N T E R 2 0 1 6

omal hernia Its unique supp

NEW

tasa parounea aro the arer firm support toff

oed support panel ttaegrwith an inthe belt has been desin belt design. T

tavw innoy panel belt is a nehe EasT

EoducIntr

anel By PEascing the

Belt

rt

gnedn

pord

sigtio

anel By PEas

king:

gh

rt

esent.omal hernia is prtase a parwherhis is especially usefuloma. Ttthe s

oundea aro the arellent support tcxevidingotill prt sainage whilspouch dr

omaters superb stion which offavinnowhe half slit method is a neT

w Half Slit Methodhe Ne• Taditional Hole Cuttingrhe T• T

o methods of bespoers twhe belt offT

ying.aas the panel is non fredequirching is rtit. No sfully or partlyougome thro coma pouch ttw the sallooed tequirpanel can be modified as r

omal hernia. Its unique supportasa par

N

llaon c

.earr.belts,

AILABLE ON NHS PRVVAAAV

.suportxwww170800 9or fur fitting or fFREEo book aTTo

o meariety of made tdles and a vgirer a wide selection of hernia sue offWWe

RESCRIPTION

.ukocx.5847 9

llation cormarther inf

eare supportweasurupport garments, belts,




too warm then you are on the right track.I have spoken to a number of peoplewho are having problems and by slightlywarming the water, much better resultshave been achieved.

l When it comes to the irrigation kit, theynormally arrive in three or four piecesand can be a bit like a Krypton Factorpuzzle to work out which bit goeswhere. You can almost guarantee I willput the flow regulator on upside downevery time! I’d say it’s a case of practicebut I still struggle, but then it’s only a fewminutes of head scratching every fewmonths! Advice says hang the bagaround shoulder height and the firsttime I went solo at home I got into allsorts of bother as the handle I was usingon a wall cabinet was too low. I had toshout for the poor hubby to hold the baghigher as I was getting backflow! Now Ihave a hook screwed up a bit higher andI’m sorted. I carry an ‘S’ hook when Itravel which can be used over doors,mirrors, curtain rails in hotel bathrooms.I also take a sticky hook as a backup ifthere really is nowhere to hang thehook. So far I’ve never had a problem.

Once the kit is all set up and you areready to roll it’s important to get the airout of the tubing. This is simply done byrunning some water through and closing

Irrigation is a method of colostomy management which involves using specialistequipment to introduce warm water into the bowel via the stoma. The water causesmuscular contractions (peristalsis) within the bowel which in turn cause expulsion of itscontents. Many Ostomates prefer this method of colostomy management as it gives thema sense of control. If you feel you would like to try irrigation you should first contact yourstoma nurse to see if you are a suitable candidate. If you get the go ahead they will thenarrange a time to teach you. Also have a look at the Colostomy Association website formore information on irrigation and how to purchase the Irrigation and you DVD.

Order Form Colostomy Irrigation and You (Patients)

Colostomy Irrigation and You is an educational DVD aimed at patients, it has been produced by theColostomy Association to raise awareness about colostomy Irrigation as a method of bowelmanagement. Note: Not all colostomates have the potential to irrigate. It is therefore essential in the firstinstance to consult your Surgeon/Stoma Care Nurse as they will advise as to your suitability.

To obtain your single copy of Colostomy Irrigation and You at the special introductory price of£4.99 (inc postage and packing) simply fill in your details below and return it with your chequemade payable to the Colostomy Association, to:Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA

Colostomy Association, Enterprise House, 95 London Street, Reading, Berkshire RG1 4QA Charity No. 1113471 VAT No. 917079312

Plea

se c

ut a

long

the

dot

ted

line

and

retu

rn t

o th

e ad

dres

s on

thi

s fo

rm -

tha

nk y

ou

�

Title:

Name:

Address:

Postcode:

Tel:

Email:

Please allow 30 days for delivery.

Colostomy Irrigation and You DVD

others may find it takes 10–15 minutesto start moving. You may find thatpegging up the sleeve and having apotter round the house helps get the lastoutput to come through, or, like me, ifyou prefer to stay in the bathroom a littletummy massage may help. Or, perhapsjust relaxing and reading a book willwork best for you. I find that everyirrigation is a little different but I havebecome tuned in to how my body feels.Saying that the little so and so still likesto catch me out occasionally and spurtjust as I’ve cleaned up and got a newbag on!

I’ve addressed Dawn’s main questions hereand I know there are lots more hints andtips out there. I would love to hear fromirrigators with their own stories andexperiences. I have been irrigating for eightyears but still learn new things on a regularbasis.

Sarah Squire

the flow regulator. Introducing air to thecolon is probably not a good idea – alittle bit isn’t going to cause any harmbut it could be uncomfortable. Theamount the cone goes into the stomawill vary person to person. I have a tinystoma and only get about a centimetreof the cone in but I know some peoplewho need the whole length in to stopwater escaping. The important thing isnot to push too hard. A gentle wigglemay help find the right direction but youshouldn’t apply too much pressure oryou could damage the delicate tissue ofthe bowel.

l Once you’ve infused the water how longto wait? Again a question we hear a lot,and again I’m going to give the sameannoying line – we are all different. Butwhat I will say is that you will learn howyour body feels at different stages ofirrigation and will hopefully learn to feelwhen you are empty. For some peoplethe output is almost immediate, and

ecaTConv

o anned tc is delight

oe that the Stnounc

ORTE FOVOM2016 ST

orw open fd is noo Awaromaher

OUR R YMAHERO.

ery pevor ee fec is theraTConv

oughout his or heoma thrta s

ognise theece ry and wjourne

ouse throma Nure of the Stolr

o anned tec is delightaTConv

w iw hoe knonominations. W

oppor

son wither

e r entir

e crucial

ughout

sociaAs

ogethet

se Nur

seNur

oe that the Stnounc

omour Stant ymport

o say a big trtunity t

somy Astosation, Ur

earer with an Amc ™

and an independent

ede invitatients arP

d is o Awaromaher

ou ano yse is tma Nur

ou!hank y

sociation,

oma oup StGr

omat St

o submitd t

emails, all

han one

o the t

000

an be

or w open fno

our nd this is y

ouse throma Nure of the Stolr

oomahers. The Stesocthat pr

wo acknooped telvhas been de

e and support darthe patient c

s the cosses acroma Nurby St

e patients the opporo givand t

e and say a huge thannominat

ontinuedor the cse ftheir nur

ughout

dAwar

edge wl

ederdeliv

ountryc

ortunity t

oou tnk y

support

se.Nur

nomina

oma St

nomina

judging

The wi

ateduc

ede invitatients arP

t and eations via pos

e tses with morNur

edte shortlisation ar

g panel.

es a £3,0eivecnner r

aant which cional gr

ontinued or the cse ftheir nur

geer sure, during and aftorbef

d Nomino AwaromaherThe St

socee patient asjudged by thr

sociation, Coomy Asteosthe Il

seoma Nurour StNominating y

support

.ery

enations ar

ciations,

omy tosol

ateduc

edeemr

seourc

ent, tve

of their

wn peo

ouldn’t be easier se c

aant which cional gr

omatt a smed agains

ational c or an educ

o help support the dt

oma departmenttr s

elveer dearsonal cer

y visitsimply omtwww s

an be

ation a educ

e enceronf

opmentelvde

and their

opment.

o uko cmaher

Nominati

o submitt

seoma Nursour Stng y

our online nominatt y

“ e reaa CmotoAs a Srais awe thveiecere

e nt thath

ouldn t be easier, se c

ell us why thtion and t

t I wislaicee SprsNutrat ps iekeat md. Irdre frmations canimno

y visitsimpl omtwww.s

o be thee ty deservhe

o d toelliras thwl aicepy srlaluci

s.tsnetiam poro ”opheron StShar

o.uko.cmahero

xt winner.e ne

ominaing

esing

A

e nang datngA gus

Nominanation

cl tloAA

6stosingng d

20161sst2

t AAugus

se Specialie Nuroma CarSt

/ ecUKIaTConv

@ ec_UKIaTConv #s

palt, Ipswich Hospits

o2016roehamotos

ec Inc. AP-015942-GB ©2015 ConvaTe

ephone 0800 88 50 50

o.uko.comahert.sww

or

ademark ®/™ Indicates a tr

oductec praTr all ConvF

onditionerms and cttull tF

@ ecUKIaTConv

.ec Ltd is an authorised user.ec Inc. ConvaTeof ConvaTe

eeease fre enquiries plor servic

ound online atan be fns c ww



News From the Office

Stoma Aidis Live

– Give Someone

a Bag of Life!

It’s incredibly exciting to start 2016 withthe launch of one of our most anticipatednew services – Stoma Aid.

In the UK, thousands of ostomy supplies arethrown away each month as they are nolonger needed, sometimes due to a reversaloperation or the loss of a loved one. Theymay no longer be suitable due to change instoma size or skin problems and the NHScannot accept unused supplies back intotheir own stocks and all of these unwantedproducts can end up going into UK landfillsites. Alternatively, they may be an end ofline run of obsolete stoma pouches, directfrom a manufacturer.

Meanwhile, in many developing countries,desperate ostomates are being forced touse bin bags, tin cans, bits of cloth, crisppackets and any other improvised items asstoma bags, due to the lack of supplies ortheir low income. Stoma Aid will provide asolution for both groups and give people abag of life.

Supplies can now be donated to ourwarehouse in Bolton, kindly sponsored byStone Logistics Ltd/PRS Ltd. From there theitems will be sorted, packaged and labelled,before being collected by reputable UKbased charities who will ensure they reachthose most in need in parts of EasternEurope, Asia and Africa. The links with thesecharities are now well established and theyalready have thousands of recipientsurgently waiting for supplies, includingbabies and children.

Frank Healy, Colostomy AssociationTrustee and main organiser of Stoma Aid,says: “This project has the potential tochange thousands of lives across the world.With the help of charities such as Hospicesof Hope, Smile International and WantokSupport these supplies will directly reachdesperate recipients in developingcountries. It is thanks to grants, fundraisingand the kind donations of many of oursupporters that we are finally able to launchthis much–needed service.” CONTINUED ON PAGE 29, COLUMN 1

Product Unit Quantity Sub (prices inclusive of VAT & p+p) Price Required Total

Anatomy Aprons £157.50 _________ _________A fantastic teaching tool for educating peopleabout the various kinds of stomas. These apronscan help explain a variety of different surgicalprocedures including colostomy, loop colostomy,transverse colostomy, ileostomy, colectomy andhemicolectomy.

Lapel Pins £3.00 _________ _________A simple and elegant way of showing yoursupport for the Colostomy Association with ourpretty and discreet lapel pins. Hard enamel lapelpins of purple Iris, produced in four colours.Supplied with butterfly clutch pin. Measuring25mm high.

Irrigation and You DVD£4.99 _________ _________Colostomy Irrigation and You is an educationalDVD aimed at patients, it has been produced toraise awareness about colostomy Irrigation as amethod of bowel management. Sold individually.

Note: Not all colostomates have the potential to irrigate. It istherefore essential in the first instance to consult your Surgeon/Stoma Care Nurse as they will advise as to your suitability.

CA Wristband £2.00 _________ _________Show your support for the ColostomyAssociation with our bright and bold wristbandsSilicone debossed wristbands, available in greenor purple infilled with contrasting coloured text.

202mm x 12mm x 2mm. Sold individually

Coasters £3.50 _________ _________These durable plastic coasters are easy to wipeand they feature Colostomy Association brandingas well as our website address and helplinenumber. Ideal for home or office. Sold individually.

Pens £1.50 _________ _________Ideal for handbags or jacket pockets. White penswith black ink and the Colostomy Associationlogo. Sold individually.

NKS – RADAR Key £3.50 _________ _________Access 9,000+ locked toilets around the UKwhere the RADAR logo is displayed. The NationalKey Scheme (NKS) aims to provide disabled keyholders with independent access to the toiletsprovided for them and increases the likelihood


Prod

ucts

not

act

ual s

ize

NEW! Colostomy Association Online ShopMany of our readers and supporters have been telling us for some time abouthow they would like to purchase Colostomy Association brandedmerchandise. So, we are very proud to announce that the ColostomyAssociation online shop is now open.Our shop features a range of Colostomy Association merchandise that you

have been asking for such as: pens, wristbands, umbrellas, coasters, T-shirts,running vests, lapel pins, colostomy irrigation DVDs and more. Buying Colostomy

Association products is a great way to give to our Charity with ‘retail therapy’ as an added bonus.The Colostomy Association Products & Services Officer, Arvind Anand, said: “Come and visit us at

colostomyassociation.org.uk/shop or complete the order form below to treat yourself or shop for a gift. Some of theseitems will also help raise our profile nationally – and what’s more, an umbrella will make a very pretty Christmas stocking filler!”

of the facilities being in a usable state.

Product Unit Quantity Sub (prices inclusive of VAT & p+p) Price Required Total

CA Umbrella £11.50 _________ _________Shield yourself from the rain and look good atthe same time, Ideal for your handbag.

Manual folding polyester umbrella in purple withwhite Iris logo on four panels. Supplied in a nylonsleeve with a Velcro fastening. Size: 90cm x35cm. Sold individually.

Running Vest £12.49 _________ _________Joined a running club, running a marathon or justwant to take up jogging? Purple sleevelessrunning vest printed on the front and back withthe Colostomy Association logo in white.

Cool Vest from Just Cool by Awdis. 100%polyester, 140gms.

Sizes available (inches):S (34), M (38), L (41), XL (44), 2XL (47)

T-shirtThree designs to choose from, all T-shirts are printed on Fruit of the Loom qualitycotton. Printed on one side with the selected design and in Colostomy Associationcolours.

T-shirt designs with the following words:#1 Living life (with a colostomy) and proud of it#2 Living life (with a stoma) and proud of it#3 I failed my English I didn’t have a colon – my stoma saved my life

T-shirt size Unit Design Size Colour Quantity Sub cost # totalS (35-37), M (38-40),L (41-43), XL (44-46) £17.49 ______ ______ _____ ______ ______

2XL (47-49), 3XL (50-52)£18.49 ______ ______ _____ ______ ______

5XL (56–58) £19.49 ______ ______ _____ ______ ______Colours available – not exact colours – colours shown for guidance only:

Sizes S–3XL only:Ash White Light pink Sky Natural

Sizes 5XL only: Black White Heather grey Navy Women’s size guide:S 10 M 12-14 L 16 XL 18

All products sold individually and prices are per item and inclusive of VAT & p+p. Please allow 28 days for delivery.

Please send me the above marked items. I enclose a cheque for made payable to: CA Commercial Ltd.

Title:

Name:

Address:

Postcode:

Tel:

Email:

£

OPEN ALL HOURS

www.colostomyassociation.org.uk/shop


#1 #2 #3




To donate your unwanted supplies, pleasepost them to the following address:

Dean PhilpStoma Aidc/o Stone Logistics Ltd/PRS LtdLorne Mill Lorne StreetBoltonBL4 7LZ

Please help make this service a success, butensure only unwanted supplies are sentand not existing useful supplies that wouldwaste valuable NHS funds. While syringes,sprays, deodorants, aerosols, prescribedmedications or drugs of any kind cannot beaccepted, Stoma Aid will gratefully receivedonations of the following items:

n Colostomy, Ileostomy and Urostomybags (closed, drainable, convex, twopiece as paired items – both parts tobe supplied, leg bags, night bags,paediatric bags, etc)

n Drainable bag clipsn Sealsn Flange extendersn Adhesive removers (wipes only, not

sprays)n Pastes (must not be out of date)n Barrier creams (must not be out of

date)n Wipes and cleansersn Disposal bags n Bandagesn Dressingsn Incontinence padsn Support belts

Please ensure any two piece pouches haveboth the pouch and the matchingflange/base plate included.

Unfortunately, the collection of items is notpossible but postage should only amountto around £5 or so for a parcel. Pleaseconsider how much even one person’s lifewould be drastically improved for the betterby your kind donation so please pay for thepostage and help make this worthwhileproject a success.

In future editions of Tidings, genuine lifechanging stories will be included clearlydemonstrating what a difference Stoma Aidhas made to people living in developing

countries. If you have any questions aboutStoma Aid then please call Niall Norbury orGiovanni Cinque at the ColostomyAssociation offices on 0118 939 1537.

Stoma Aid has come into being courtesy ofthe generosity of our supporters andgrant–making trusts, as well as a financialcommitment from central ColostomyAssociation funds and the kind support ofStone Logistics Ltd / PRS Ltd. So farapproximately £20,000 has been donatedand ring–fenced for this cause but the aimis still to raise £150,000 which will ensurethat this worthwhile project will last for manyyears and can be spread to more developingcountries. In the meantime, the ColostomyAssociation Trustee Board has agreed tobear half the running costs and has provided£10,000 of the total funds so far.

However, ongoing fundraising efforts arecontinuing through other avenues such asapproaching UK Rotary Clubs and hopefully,applying for a global grant. We intend towork with the local Rotary clubs overseastoo (where a UK based charity does notexist), to ensure that the goods getdistributed to those that need it most andat a negligible cost. If you can offer any helpwith fundraising please liaise with GiovanniCinque or, if it involves a local Rotary Clubor other similar service organisation in yourarea, please contact Niall Norbury who willthen pass on your contact details to AlfredLevy, Colostomy Association trustee, asAlfred has kindly agreed to take a major rolein this specific fundraising campaign.

Our special thanks go to Stone LogisticsLtd/PRS Ltd for use of their staff andwarehouse storage space, to the HildenTrust for their £5,000 grant, the C.B & H.HTaylor 1984 Trust for their £3,000 grant, andto our valuable supporters who have givenso generously for the benefit of fellowostomates in developing countries. Thankyou all for making Stoma Aid a reality andhelping the Colostomy Association givethousands of people a bag of life.

Ostomates in Kosovo have alreadybenefited from Stoma Aid. Working inpartnership with the Kosovan Embassy inLondon, Nine boxes of supplies havealready been despatched to the KosovoStoma Association. n

Get yours from:colostomyassociation.org.uk/shop

Whychoose?

Get them all

S H O W C A S E S TO M A C A R E P R O D U C T S A N D S E R V I C E S

| 2 4 H O U R H E L P L I N E : 0 8 0 0 3 2 8 4 2 5 7

Update on stoma care products and servicesTidings is always interested to learn about new stoma care products and services from manufacturers and suppliers. If you have

found a stoma care product or service beneficial to ‘living with a colostomy’ please let Tidings know. YOUR findings could

make ALL the difference to others.

FREE SAMPLE

Call the CliniMed Careline

0800 036 0100or email:

[email protected]

LE

he ne 00il:uk

New

Aura FlushableAura Flushable is the next generation of stoma pouch in CliniMed’s

innovative flushable range for colostomates. The inner liner can be

flushed with or without the flange as both are fully biodegradable.

In addition, Aura Flushable offers the comfort of medical grade

Manuka honey.

NEW!

Suportx are proud to launch a new rangeof premium Corsinel support belts.

The New Easy Panel belt is unique and a first for the UK. This garment received a verypositive response from most stoma care nurses at the ASCN nurses conference thattook place in October 2015.

The Easy Panel belt has a built in support panel that can be easily modified to allowthe whole or part of a stoma pouch to be outside of the belt. The slit system isnew and is offered exclusively on the easy panel belt. The slit system is an idealsolution to enable good drainage of the stoma pouch, whilst still supporting thearea around the stoma to assist in hernia prevention or support of existing

parastomal hernias.

Also available in the new Corsinel range of belts is a tube belt with a shaped back,this belt offers maximum comfort, support and a clean line so can be worn with utmost

discretion.

Please refer to page 24 for our main advert. Or call 0800 9179584

3 0 | T I D I N G S | W I N T E R 2 0 1 6

NewLBF Sterile Barrier Film Sprayto help prevent sore skin LBF Barrier Film Spray has evolved into the improved LBF SterileBarrier Film Spray, meaning it can now safely be used on brokenskin too.

LBF Sterile Barrier Filmprotects skin from bodily fluidsand the sticky adhesive onstoma pouches, which cancause skin to become red,sore and sometimesdamaged.

PID 2373

FREE SAMPLE

Call the CliniMed Careline

0800 036 0100or email:

[email protected]

LE

he ne 00il:uk


T I D I N G S | W I N T E R 2 0 1 6 | 3 1| W E B S I T E : W W W . C O L O S TO M YA S S O C I AT I O N . O R G . U K

Having a stoma should not preventanyone from living a full or active life, butthere are some challenges unique toostomates. It is estimated that almost 1in every 500 people in the UK live with astoma which is why the ColostomyAssociation is committed to creating astoma–friendly society, such as bycampaigning to improve the attitudes ofthe general public and to improve toiletfacilities.

Ostomate Friendly LoosCalls are frequently received on our helplinefrom people wanting to know where theirnearest accessible toilets are located orraising complaints about disabled toiletfacilities in their area. To improve toiletfacilities across the country we have been:

u Writing to the UK network of trainproviders asking them to includehooks in their toilet cubicles on allplatforms.

u Consulting with Hitachi whose newfleet of trains for 2017/2018 will havetoilets which are suitable for thoseliving with a stoma.

u Attending the annual Loo of the YearAwards to put forward the case forostomate–friendly toilets.

u Forging links with the British ToiletAssociation.

u Encouraging our supporters tocontact their local MP to stress theimportance of ostomy–friendly loos.

u Joining the ‘Changing Places’campaign with Mencap.

Since launching in 2006, the ChangingPlaces campaign has led to the creation ofimproved ‘Changing Places toilets’ whichmeet the requirements of all people whoneed accessible toilets.

Among their comprehensive list ofrequirements is the inclusion of a shelf forpeople with a stoma to change their bag,sanitary bins in each cubicle for disposaland now to include a hook on the back ofthe door, thanks to our contact with

StomaFriendlySociety

Changing Places as part of our campaign.By working with Changing Places we hopenot only to improve facilities for those witha stoma, but for all users of accessibletoilets. A full list of Changing Places toiletsis available on their website at:www.changing-places.org

Our collaboration with the Changing Placescampaign led to a recent debate in theHouse of Commons about accessible toiletfacilities where Dr Philippa Whitford – MPfor Central Ayrshire – specifically raised theneeds of ostomates.

Rossanna Trudgian, co–chair of theChanging Places Consortium, said: “We aredelighted that the Colostomy Associationare supporting the work of the consortium.Some Changing Places toilets have acolostomy bag shelf in recognition of theadditional needs of people with a stomawhich we thoroughly recommend. Thereare still many large public places across theUK that lack Changing Places toilets andtherefore deny people’s rights. With thehelp of our fantastic campaigners, we willcontinue to fight to make sure every singleone of the ¼ million people in the UK whorequire a Changing Places toilet, can accessone.”

The Colostomy Association has three mainrecommendations to make a looostomate–friendly:

1 A shelf or countertop for changing ofappliances.

2 A hook for hanging clothes and bags.

3 A waste-bin in cubicles for disposal ofused pouches.

These additions to toilets are both easy toimplement and fairly inexpensive. Makingthese changes can not only improve thequality of life for people living with a stoma,but improve general cleanliness for all users.

Ostomate FriendlyAttitudesOur campaign for a stoma–friendly societyalso extends to the treatment of people

with a stoma in airport security. Everyoneunderstands the need for heightenedsecurity checks due to the threat of terroristattacks and that some people with a stomabag may have to be searched. However, it isvital that anyone with a stoma is treatedwith respect and dignity. To tackle this, wehave contacted airports across the countryto offer training to their security staff to helpimprove their understanding of what astoma is, what a pouch/plug looks like andhow people wearing a stoma bag shouldideally be treated.

This campaign extends far beyond airportsecurity staff to the wider general public, aswe are hearing from more ostomates whohave been challenged for using accessibletoilets or being refused help from shop staffwhen a toilet is urgently needed. This, sadly,is becoming far too common.

Our aim is to educate the public about therights of people with a stoma to useaccessible toilets and to improve publicperceptions. To date we have responded toyour negative experiences by:

u Writing to a well–known supermarketchain after a customer was treatedrudely and refused urgent access to atoilet. A suitable apology ensuedalong with the promise of improvedstaff training.

u Writing to a Council to successfullylobby against the closure of a publictoilet facility.

The Colostomy Association will continue tochampion the rights and issues ofostomates in the UK. If you would likesupport or assistance in improving the toiletfacilities in your local area or if you needhelp canvassing a business which has leftyou feeling embarrassed, then please get intouch with Niall Norbury, our MarketingCommunications Officer by telephoning:0118 939 1537 or by email:[email protected]

Together we are stronger and together wewill achieve a stoma friendly society! n

Jackie Dudley, former ColostomyAssociation Trustee, writes about herwork as a volunteer at ColostomyAssociation head office and her role insupporting ostomates at Open Days andat her local support groups.

Many years ago, I attended a coffeemorning held by a stoma care nurse. It wasthe first time that I had met anyone with astoma and it was a real eye–opener. Thehints and tips that I received about livingwith a stoma proved to be invaluable andthe warmth of the friendship I was offeredwas awesome.

At that meeting, I met a young lady from theBritish Colostomy Association (BCA) whosuggested that I might like to visit theirheadquarters in Reading and see for myselfthe work carried out to support, advise andhelp other colostomates.

That was the day I became a volunteer.

I started out in 2002 by becoming a ‘postlady’ helping with the stacks of parcels,packages and letters that had to be sent out

to hospitals, nurses and the general public.At that time this was carried out twice aweek and so I worked on a Thursday and Iloved it. I felt that I was part of helpingothers who, like myself, needed the supportthat the association was offering.

It was in 2005 that the British ColostomyAssociation ceased and we became theColostomy Association. A team ofvolunteers became the Board of Trusteesthat allowed the charity to continuesupporting ostomates throughout the UKand sometimes those from abroad. I wasone of the new Trustees that worked underthe guidance of the charity commission toform the new and exciting ColostomyAssociation. Macmillan Cancer Supportwas very supportive and we were able tostay in the “old” offices in Station Road andhave access to the database of our BCAsupporters.

When we moved from Station Road to newpremises I went too! The paid team wasvery small and my contribution to the workthat the association was doing became very

varied and always enjoyable. It has beenamazing how the Colostomy Associationhas expanded and we now have over19,000 supporters – all receiving support,advice and help from the association. Thenumber of volunteers has increased and wenow have over 100 trained volunteersthroughout the country.

As the years went on, I continued to workin the office and attend Open Days so thatI could make contact with other volunteersthat were spreading awareness of theColostomy Association. Taking along thebanner plus literature and setting up astand is an important part of being avolunteer; raising awareness for theassociation and encouraging others to joinis very rewarding.

This is also a wonderful way of meeting therepresentatives of the many companies thatsupply and deliver our products. It is a twoway street as they benefit greatly from ourpresence at their Open Days. The volunteersget the opportunity to meet the manyostomates that attend and answer their

A Day in t he l ifeS U P P O R T D AY I N T H E L I F E O F A V O L U N T E E R – J A C K I E D U D L E Y


questions and encourage them to live lifeto the full.

Ten years ago on July 4th 2005 I started asupport group in Bracknell, and later tookover the support group in Reading, from aretiring stoma care nurse. Both groups arestill running. They are small social groupsthat offer support to the ostomate, familymember and carers.

They are lively meetings and I encouragethe members of the Bracknell group to runthe meetings. In this way, we have new andinnovative ideas making each weeklymeeting different. Speakers are invited tocome along to talk to the members and Ihave received full support from themanufacturers whose representatives comealong to demonstrate their products.

In 2015 I resigned from being a Trustee toallow others to come in with fresh ideas butI keep in touch fully and I continue tosupport the Association in any way I can. Istill work in the headquarters of theColostomy Association in Reading andlove being in the hub of such a busy office.

A typical day’s work would include:

MailshotsManufacturers and suppliers of ostomyappliances etc often ask the ColostomyAssociation to send out information to oursupporters. These are usually invitations toOpen Days to be sent to ostomates wholive in specific areas. The ColostomyAssociation never discloses details aboutour supporters on our database to others.The companies therefore send theenvelopes containing their information andI and other volunteers stick on the addresslabels and the stamps. This is an importantway of raising funds for the association.

General office work This includes working on the computer toupdate spread sheets and the database. Ikeep the many pigeon holes topped upwith leaflets and booklets from the storecupboard. I will type, copy and scan lettersand other information and willingly take onany other task that I am asked to do.

Packaging ready forpostageI pack up Colostomy Associationinformation packs ready to send to newsupporters and also the bulk orders of ourbooklets, leaflets and other literature tosend to our volunteers, hospitals, stomacare nurses and health centres. Recently Ihave also been packaging the many itemsnow being purchased from our On–lineshop.

FundraisingI cut the stamps off all the envelopes thatarrive in the office. These are thenforwarded to a company that pays £10 akilo to the Colostomy Association. This isan important fundraiser for the charity.

My work as a volunteer is so enjoyable andbeing part of the wonderful team that looksafter thousands of ostomates is sorewarding.

Jackie Dudley

e of a Vo lunteerS U P P O R T D AY I N T H E L I F E O F A V O L U N T E E R – J A C K I E D U D L E Y




Ed every

VSAou’ll finY

esives with adhest prenconveni

er Film SprBarri

R SKIotect vuln

UE Oeed to prg you nythin

der Film ane LBF Sterile Barrithetarke mg thdinclus inontatisen

on pcatich applio touay with n

INe harmful eom thable skin frern

anct ruodeam prer Crd LBF Barrier Filg LBF Sterile Barrit leadined skagamd de anor sorperfect f

dds anf bodily fluieffects of ety oom a varioose fr. Chegn

ew LBF Stee nd th, anlm Wipeskin.

rile

patact us todCon

eline: 0Car

ed LBF® ared® anCliniMd nglaned in Enegisterr

gh Wycom, Hiwater,dLou

pppy.ee sampleeceive your fray to r

0800 036 0100

gsoldined (Hf CliniMarks oemaded tregistere rffice: Cavell Hed oumber 01646927. Registern

.ed Ltd.©2015 CliniMY., HP10 9Qcks, Bumbe

.clinimewww

en

g

y. is a companed Ltd. CliniMs) Ltd,ayaves Beech W, KnouseH

d.co.uk

[email protected]

PID 2310

even the most senotUnbeatable pr

nsitive skintection for

surgery, be it elective or an emergency, theyhave left the comfort of the medical supportteam that is the hospital; they are now in anew world, metaphorically speaking, andthis is where the carer comes in.

The first thing was to reassure my wife thatI was with her all the way, no matter whatthe future holds, be it leaking pouches –not often now, thank goodness – orembarrassing sounds that can occasionallysound like an out of tune barrel organ.When we are in the privacy of our home wejust have a laugh at it and let it pass. If weare out in public we do what others do, thatis to look around with an inquisitive look ofwho’s to blame for that; who knows therecould be another person who is in thesame situation and they think it’s them.

A person who has a colostomy is alwaysconcerned that other people can see thebulge in their clothes, or detect anunpleasant odour from the pouch. This isthe point when I try to reassure my wifethat all’s well and not to worry or if there isa problem let her know in a caring way soas not to cause more upset, whilst at thesame time distracting the attention ofothers from the situation.

After any person has undergone majorsurgery on the abdomen, they are told tolet the muscles heal before they liftanything heavy, so as to avoid a postoperative hernia. This again is the pointwhere I came in, doing all of the lifting andcarrying, bending down to pick things up,

all the things that prior to her operation mywife did for herself.

At some time or other, the subject of whatthe stoma looks like and how to change orempty the pouch will come up. This wastackled when we were both in a relaxedmood and under no pressure. It is notvoyeurism to find this out and watch theprocedure, but essential if you are evercalled upon to help at some later date.Should your partner have an accident thatleaves them with limited, or indeed no, usein one arm or hand then you, like me, thecarer will have to step up to the line andgive assistance, and it is better to knowwhat to do in a planned way rather than ina state of panic.

Whatever you do, or how you handle thesituation, always remember that no matterhow liberal your sex life, your wife/partneris going to feel uncomfortable with thesituation. It is the same in the early dayswhen the body is coming to terms with thechanges in shape and behaviour that a leakcan sometimes occur. I tried to show mywife that I was there to assist. When she gotinto the shower I cleaned up, changed bedsheets, found clean clothes etc.

After all of these little problems, I hope youwill be like us, and find it has drawn youboth closer together and given you a fewgood laughs along the way.

Mack

In the summer issue of Tidings you mayremember a suggestion that we include asection where carers can share experiencesand exchange ideas. We contacted Mackwho wrote the letter and asked him to writethe first article.

I am very pleased to have been given thisopportunity to express my views on what itis to be a carer. When you mention theword carer to anybody, they immediatelyassume you are talking about a person whois trained to make house calls on the elderlyand infirm, or perhaps works in a carehome, or just maybe a stay at home personwho has taken on the responsibility oflooking after a member of the family whoneeds help with the day to day things in life,like washing and feeding.

I am not that type of carer; I am likehundreds, if not thousands, of other peoplewho support somebody who, for no fault oftheir own, have to live with a medicalproblem. I have no training or NVQs, what Ido is give support to my wife, an ostomate,because we care for each other. Somepeople have had an opportunity to askquestions before their loved ones wentunder the knife, but I was totallyunprepared for what my wife had to endurebecause the procedure was a matter of lifeor death.

I am there to laugh with her, give her ashoulder to cry on when she feels low andshow her that I really do care. When anostomate first arrives home after their

L I V I N G W I T H A S TO M A : C A R E R S


Mack andhis wife Dian

A carer’sperspective

C menment wity wanta h bag wwith firsh g

for Stom

bag

H

ompl entary wa h bagCom washplim

om NWOSfreHomecarre

der Complimentary wash bag with first or

e w s and s wspond al b gss w th sal agba

•

wipees an disp• and ee

•

deree wipes and disposal bags with each or

nd fl sege cflan ttin seervvicutt g sng

r

ee pouch anduch

rr F

F

F

•

•

ee pouch and flange cutting servicer

adv

w

dvic

g a wwidg a

Immpartial, earti

rF F•

Impartial, expert advice•

, o erinoff

Next dNex

•

Next day delivery*•

all

•

ers all manufacturom oducts frange of pr, offering a wide ry

toma ap iananappliatoma appfor Stoma afor Sto pliaa appli

An independent company

an

••

for Stoma appliancesy selivery ry sHome deliveHomome deliveHome deHome delivery service

our needsA service to fit y

[email protected]

escriptioneceipt of valid pr* Upon r

eor homecaremailor

0800 243 103eephonefr

ementsequirour re information or to discuss yor morF


2015 was an incredibly positive year withour 10th anniversary celebrations andincreasing demand for our services fromostomates, carers and medicalprofessionals.

We are extremely proud of what wasachieved with your support last year and, asexplained by our President, we plan to doeven more in 2016. What’s more, in 2017,our focus will be on our original roots –going back 50 years to the ColostomyWelfare Group which was set up in 1967!

As a charity, we are committed to beingtransparent and ensuring that oursupporters know how any money theydonate or raise for us is spent. Here’s asnippet about our services, activities andstaggering levels of support provided eachyear:

1 Unique supportThe knowledge, reassurance, empathyand advice ostomates can provide oneanother cannot be over–estimated. As aresult, many of our services enable thoseliving with a stoma to be helped bythose who have been in a similarsituation to them.

Our 24–hour helpline is unique and it isone of our most–needed services. Itprovides vital support at any hour of theday and on any day of the year. On

carers, members of the public andpeople living with a stoma. Traffic on ourwebsite has grown by 20% in the pastyear with over 40,000 visits each month.

Tidings magazine continues to grow inpopularity as more and more peoplediscover it to be a vital source of lifestories, inspiration and information. Over19,000 people now receive themagazine and in total up to 84,000copies of Tidings are sent out each year.

Our literature on topics ranging fromcaring for colostomates to healthy eatingis very popular with nurses, patients andother agencies. In the last year, theColostomy Association issued over20,000 booklets to individuals andhundreds of parcels of leaflets weredelivered to hospitals.

It is essential that anyone, regardless ofbackground or financial situation, is ableto find the information they need. As aresult, our website, magazine and rangeof literature are completely free toreceive (although donations are alwayswelcome to help cover the costs).

3 Local impactAlthough we are a national charity, weaim to improve the living situation ofostomates in their own communities.


average, over 3,000 calls are made toour helpline each year.

Our closed Facebook Group is anotherinvaluable service, with over 3,700members using the group as a safespace for advice, information andassistance. Despite its large size, it’sadministered by only a handful ofdedicated volunteers who monitorhundreds of posts each day, almostevery hour of the day!

Our Junior Ostomy Support Helpline(JOSH) provides an important lifeline toparents or carers of children with bowelor bladder dysfunctions. JOSH enablesmums, dads and carers to speak withtheir peers about topics of concern,giving them emotional support andreassurance at a time when they areoften feeling totally isolated. Thishelpline makes a very real difference topeople’s lives, whether their child is onlya few days old or in their teens.

Whether it’s online, on the telephone orin person, the Colostomy Association iscommitted to providing unstintingsupport whenever people need it.

2 InformationThe Colostomy Association hasbecome a vital source of information forhealthcare professionals, students,

C A N E W S C H A N G I N G L I V E S

Changing lives:

Howthis is

achieved by the

C A N E W S C H A N G I N G L I V E S

improving the knowledge of carers andcare agencies in parts of the country aswell as initiatives to help people livingwith a stoma become more active.

Local support can make a real differenceto people. We would like to reach thosewho struggle to find out about our24–hour helpline or visit our website sothat we can make a positive impact inthe community where they live.

4 National debateAs well as providing individual support,the Colostomy Association iscampaigning to improve public attitudes,as well as facilities for ostomatesthroughout the UK. We are workingharder than ever to champion theconcerns of those living with a stomaand we are creating a national debateabout what it means to live with one.Further information about our StomaFriendly Society campaigns can be foundon page 31.


The past year has seen a growth in ourlocal services as well as the launch ofnew projects and initiatives.

In 2015, we trialled Pouch Craft – a localcompetition where children wereencouraged to draw on and decoratestoma bags. The purpose of the activitywas to introduce the topic to youngpeople in a way that was accessible andfun. The scheme proved to be incrediblypopular with adults and children alike,with our charity receiving plenty ofpositive press attention focusing on thesupport we provide.

Our team of nationwide volunteers arevital in ensuring we reach communitiesacross the length and breadth of the UK.They attend hundreds of open days upand down the country each year, runsupport groups and provide one–to–onesupport to patients before and aftersurgery.

Coming up in 2016, more local pilotprojects will be launched focused on

Thanks to a boost in staff, volunteers andfunds and by proactively lobbying, wewill succeed in changing publicperspectives.

5 New opportunitiesOur plans are to offer more services andlaunch more projects by finding new andexciting ways to provide better supportto larger numbers of people living witha stoma. With your assistance, we hopeto reach and support every single personwith a stoma who needs our help. n

Colostomy Association– in numbers:

3,000+ calls received each year3,700 members of our

Facebook Group19,000+ registered supporters20,000 booklets and factsheets

delivered each year40,000 hits to our website each month84,000 copies of Tidings sent out each

year

Changing lives:

Neede CWWe

Nurse HWWe

dsourAbout YYoCare

ouse Help YYotoma our SYYoHelp

t Dayveries or Nationwide

ocal ersonal L PTime

t no extra cost.cts straight to your collection service

e provide . Wmediatelyynd Specialist nurses

, dispensing -free

. usiness

uk.oc.lacgisurhtrowochdale OL11 2NUway R

arkherwood Business Ptdh Surgical Supplies L

NextDelivOn T

specialising in stoma care since 1981.e are an independent family-run buWWe

, conveniently and discreetly atdoor; quickly. Delivering high-quality producfrom your GPP.

an electronic prescription and prescription cand always implementing any requests imm

toma Care an, working closely with Sservicehassle-Ainsworth Surgical Supplies offers a

are team.and speak to

wsina.wwwQueenswUnit 5, ShAinswort

our friendly customer ca now a0800 413172Call



500 ClubSeptember 2015Draw Winners!

Anonymous £ 362.00Anonymous £ 181.00Anonymous £ 72.40Mrs Moody £ 72.40Mr Saunders £ 72.40Anonymous £ 36.20Mrs Hensman £ 36.20Miss Holcroft £ 36.20Anonymous £ 18.10Anonymous £ 18.10Mr Newton £ 18.10NOTE:The following people also kindlydonated all or part of their winningsback to the Colostomy Association:Miss Holcroft donated £36.20; MrSaunders donated £10.00; Anonymousdonated £15.00; Anonymous donated£15.00.

Win up to £25,000 with the newUnity Lottery – see page 12 fordetails.

Each year, the Colostomy Associationattends the annual conference for theAssociation of Stoma Care Nurses (ASCN)to help spread awareness of the services,information and support the ColostomyAssociation can provide patients.

Held in Birmingham in 2015, the ASCN’sannual conference brings together around500 stoma care nurses, stoma productmanufacturers as well as otherorganisations and charities for three days toshare information and gain knowledge.

Representing the Colostomy Associationwere Sarah Squire, Rosemary Brierley andNiall Norbury who were kept busy talkingwith stoma care nurses about our services,networking with other organisations and

individuals, as well as attending someinsightful topical talks on developments instoma care.

There was a great deal of interest fromnurses in both our Colostomy IrrigationDVD and our Junior Ostomy SupportHelpline (JOSH). Additionally, theColostomy Association delegates wereable to establish and build on contacts withnurses, companies and other organisationsin attendance, as well as potentialcontributors to Tidings.

The conference is the main annual gatheringfor the Association of Stoma Care Nurses –a national organisation originally establishedas part of the World Council for EnterostomalTherapists (WCET) which became the ASCN

UK in 2013 to promote collaborationbetween stoma care nurses and thedevelopment of stoma care within the UK.

Speaking about the event, MarketingCommunications Officer for the ColostomyAssociation, Niall Norbury, said: “This year’sASCN annual conference was a greatopportunity to let both healthcareprofessionals and the stoma industry knowabout the wide range of services andsupport that the Colostomy Associationprovides. Additionally, the contacts madeand information we learned from theannual conference will help enable theColostomy Association to champion thevoices of people living with a stoma in thecoming months.” n

The Colostomy Association’s senioradministrator, Jo McKenzie, wasrecognised for years of hard work anddedication after winning Employee ofthe Year at the Pride of Reading Awardsin the autumn.

The annual awards recognise the best andbrightest individuals, companies, charitiesand groups in Reading. Jo received hernomination from the ColostomyAssociation’s General Manager, Sue Hale,for going the extra mile to ensure that vitalservices such as the ColostomyAssociation’s 24–hour helpline,attendance at open days and range of freeliterature remain accessible for as manypeople as possible.

Jo initially joined the British ColostomyAssociation back in 2003 and has been amember of the Colostomy Associationteam for over a decade. As senioradministrator, Jo’s duties includesupporting a team of over 100 volunteersnationwide, managing the 24–hourhelpline, overseeing volunteers’attendance at open days, organisingvolunteer training sessions, as well asdealing with our online and telephoneenquiries on a daily basis.

Employee of the Year Award

Speaking about receiving the award, Josaid: “This is an amazing thing to happenfor me and the charity. I was totallyshocked. It is wonderful being able to helpso many people – and everyone whoworks for the charity loved the opportunityto benefit from the positive publicity.”

The entire team at head office is extremelyproud of Jo and everyone is delighted tosee her formally recognised for years ofhard work and service for the charity.

Jo is pictured above with Chris Tarrant(from ITV’s Who Wants to be a Millionaire)and David Woolford from the awardsponsor, Magal Engineering Ltd based inReading.

L–R: David Woolford, Jo McKenzie, Chris Tarrant

Use

d by

kin

d pe

rmis

sion

of G

et R

eadi

ng

Colostomy Association at ASCN 2015


F O C U S O N G E T T I N G I N V O LV E D W I T H T H E C O L O S TO M Y A S S O C I AT I O N

Would you like to help out with taskssuch as promotion, lobbying, giving talks,fundraising or administration? Helpersare needed for the following specificactivities:

Local promotion Could you help spreadthe word about the Colostomy Associationin your local area? We are looking forvolunteers who can contact their local GPsurgeries, stoma care team, hospitals,libraries, and pharmacies to displayColostomy Association literature, Tidingsmagazines or general advertising posters.Alternatively, perhaps you could provide uswith the contact details for the editor ofyour regional community magazines so thatwe can send them future event information.Please contact Niall Norbury if interested.

Local campaigning Perhaps you’d like tohelp us by lobbying your local MP aboutspecific Colostomy Association campaignsor topics of concern. Please consider joiningour ‘campaigners’ database so you can

Without our wonderful team of admin volunteers we would be unable to offer the range and quality of services that peoplewith a stoma require and expect from us. Their impact on our day to day work ensures our quarterly magazine and range ofliterature reach as many people as possible.

A typical case is Terry Bryant. Terry lives inReading and he has been volunteering in theoffice for more than three years. Terry was 72when he had his stoma operation and hecalled us for advice. A year later Terry decidedthat he wanted to give something back; tohelp other people with a stoma get used tothe changes in their lifestyle. Terry joined us asan admin volunteer in 2012 and he helps outwith a variety of tasks in the office on a regularbasis.

Most of Terry’s time with us is spent dealingwith a large number of postal mailings but healso helps the admin team pack up and sendout orders from ostomates, nurses or supportgroups. Terry was also on hand at our 10thanniversary open day to meet and greetattendees.

Terry finds volunteering with us rewarding ashis contribution is making a real difference.

If you’re interested in joining as an adminvolunteer, please contact our General Manager– Sue Hale – via telephone 0118 939 1537 oremail [email protected]

Get Involved with the

proactively assist us when the need arises!Please contact Niall Norbury if interested.

Giving talks to Rotary/Lions Clubs Wouldyou be able to give a talk on Stoma Aid toclubs in your local area? Perhaps you enjoypublic speaking and can travel easily toseveral nearby clubs. The presentationslides and script will be provided and we’lleven make the initial approach for you!Please contact Niall Norbury if interested.

Fundraising As an independently fundedcharity we rely heavily on donations, grantsand the efforts of fundraisers to continueour range of free services. If you’d like tohold a cake sale, run a marathon, ‘gopurple’ or organise another activity to raisefunds please contact Giovanni Cinque.

Admin Perhaps you’d like to assist in ourhead office with mailings, research, puttingwelcome packs together, parcelling upliterature for nurses and other office tasks.For more details about the work of aColostomy Association admin volunteer,

read Terry’s story (below). If you live in ornear Reading and are interested, pleasecontact Sue Hale.

Other skills or useful contacts?If you have a different skill, expertise or auseful personal network/contact you thinkmay also be of benefit, please let us know.We’re always interested in exploring newways of reaching and supporting morepeople!

If you have a few hours to spare on a fairlyregular basis and believe your skills couldbe of use, please get in touch:

Niall Norbury – Marketing Communications Officer

[email protected]

Giovanni Cinque – Development Officer

[email protected]

Sue Hale – General Manager

[email protected]

Alternatively, call the ColostomyAssociation office on 0118 939 1537.

Thank you so much.

FREEFREEFREEFREEFREEFREEFREEFREEFREEFREERE

ELP P

ken skin

emerg

en skin

aks irritatiodour w

ballooemergenciesr

balloonedness

PUT AN END TO...

onworryning

ers

esor

led

dueesidue

ok

od

okbrbr

leaessstr

skin

odp

i

e skinsorodour

g

dpoor adhes

ewballooning

rw

edneirrkl

y irritast

worryleaks

WITH OUR... FR

e skinsoroursion

wednessrst

odourstr

essorry

ess esiduer

gk ki

orry

k kibbtiemergen

worryessr

nncies

leaks

esion

ednessr

UIDE

oken skinbrationpoor adheesstr

EE STOMA SOLUTIONS G

eased

supplies of anything that you may ne

SO

RE

SK

IN

CHANGE IN OUTPUT

incrre

medication, tummy upset or ill health. The amount of your output may have i

e skin. For example, you may be experiencing diarrhoea, perhaps due to p y y be expe

cati t

r om your stoma, this could be contributing to sorrestoma

p i i

yIf you notice a change in output frro

visiting h t

of your urine? Could you have an infection?

Either your nurse or your delivery comysuppli f h

e NuAsk your Stoma Carrein output.

drainage systems to help you with i

ent type or size of poupferreusing a difou m. YYo

CHANGE YOUR POUCH SIZE

afect the adhesion of the flit may af

equirA very thin layer is all that is re

e each pof any excess beforredust of

oken skin. Apply this sparingly tof

may help to dbrro

pOSTOMY POWDER

e pouch application.befor

adhesive. Apply to clean skin andbeforree pouch a li ire

eating a thin layer between ti A

om furby crre

e skin frrootect sorrehelp to prroepPeri-Prsuch as BARRIER FILM

application.

macies. Apply to clean skinpharrm

fectivis an efCALAMINE LOTION

e Nurse.Stoma Carreed one to alterre

may make you prro

your output. For example, chemmay mak

TARE OF MEDICAL TREA

WBE A

perhaps due to medostomist, drinking plenty e important wh

uid is even morreof fle a urroIf you arre

experience diarrhoea.medications to take with you, in case you

ou should contact your GP or Stoma Care Nurse to discuss possibleGP o e

as this can often cause changes in ybowel habit. YYo

ING ABROAD,VELLARED FOR TRABE PREPPA

e skin.sorreit may cause irritation, itching and even

, and if faeces then come into contact with t ound your stoma,he skin arro

e intoi i

as these may alter the output frileostomy om a colostomy or y r the ro

VOID SPICY OR RICH FOODSA

eat any underlying illness.or trre ut

given some medication to slow down the outp

e struggling to drink. It is importantou may beto avoid dehydration. YYo

e than your inputortg k. It is imp

d

, or if you arre

if you feel unwell and notice that your output is much morre f

NURSEACT YOUR STOMA CARE

CONTTA

SOLUTIONS

ostomist, have you noticed a change in the colour or smell y noticed a

e a urroIf you arre

alterations to your output

‘Instructions for Use’ to check whether that may have caused any l

m of medication? It may be eading the worth redication? It m

adiotherapy?e you taking any forrmArregoing chemotherapy or rra

ently underrge you currreArreoad?ecently travelled abrro

Have you rre

in your output?

Have you eaten or drank anything that could be the cause of changesi

POINTS TO CONSIDER

ou may be exps d d

skin Ystoma, this could beskin. YYoou bYo

If you notice a chanstoma thi ld b

perience the very best ostomye Nurse n experienced Stoma Car

e to help you find the solution toe skin, leaks, adhesion, s sorther it’’s

es it easy to find the right solution oduct suggestions or ent prferf difff

WITH OUR ... FR

e you expe want to make surWs why we’ve asked ane. That’’scar

guideEERto put together this Foblems. Whetmany common pr

esidue, our guide makeodour or rfor you. This includes a range of

RE

SID

UO

DO

UR

AD

HE

SIO

NLE

AK

S

UIDE

ake this time easier

SO

RE

SK

IN

r.

ny will be able to assist you with temporaryeed to m

mpa

k thi

ny wito m

pa

rse for advice.

seeaan incre

ch or additionalch or ad o

om t fromay benefi

e.ange/baseplat

ed, otherwise

plicationouch ap

skin and o clean

dry out wet, y out

d allow to dry

the skin and thee skin and th

rther damageage

may Sensitive®

allow to dry prior to each pouch/baseplate

ble at mostn and

emedy for mild skin irritation, availa at mosve rre

r further advice, consult your GP or bowel habit. Fo

y and radiotherapy. Some medicationsy.motherap

as some may upset TIONSD INVESTIGA

TMENTS AN

dication tum

xperiencing diarrhoea,operiencing diarrh

e contributing to sore g to so

nge in output from your om yog output fr

Sensitive®®epPeri-Pr

C

chasto

ORDE

ALL 4410800 0282 (

TIVETERNATAL

outine thaanges to your daily roblems. e proma car

R YOUR FREE GUIDE

ALESENGLAND & W ) OR

, EMAIL SAMPLEYELY

at could all help to alleviate yo

Y!E TODAY

R 0800 626388 (SCOT

TS.CO.UKS@SAL

)4

eased.should become unwell.

talk to your GP about medications that you can carry with you, just in case you should become un ll

roe prone to urinary tract infections, then you should into urinary tractp

visiting hot countries. If you arree important whenen morre

or ill health. The amohave increasedhave incr

p e to medor ill health Thour

LAND)

PR

OD

UC

TS

UE

)5

ount of your output may

dication tummy upsetsetcation, tummy up

w

www.salts.co.uk

S U P P O R T J O S H

Are you the parent or carer of a child withbowel or bladder dysfunctions/diversions?The Colostomy Association’s specialistparent helpline, JOSH can provide you withthe support you may need.

JOSH was launched by ColostomyAssociation Trustee, Wendy Hetherington,at the end of 2014 as a much–neededservice for parents of children with boweland bladder conditions. The helpline isstaffed by trained volunteers who have allexperienced the same issues andchallenges as their callers. Two JOSHvolunteers in their early 20s haveJ–pouches themselves and are happy totalk to teenagers about their ownexperiences.

To be put through to a JOSH parent, pleasecall the Colostomy Association helplineand ask to speak to someone from JOSH.Our admin team will take down your detailsand find a helpliner who best matches yoursituation who will then call you back at atime that suits you.

Call JOSH today on 0800 328 4257

JOSH parents receivefurther trainingParent helpliners for the JOSH havereceived further training in the past fewmonths to help them provide even greaterlevels of support to callers.

In November 2015, seven JOSH parents andour junior ambassador, Aled Griffiths,attended a CliniMed sponsored trainingsession on Neuro–Linguistic Programming(NLP). The course provided helpliners withadditional knowledge and skills on effectiveand empathetic communication.

Additionally in November, JOSH volunteerstook part in an IPSEA law training course tohelp them navigate the new legalframework for children with specialeducation needs and disabilities. As a result,our helpliners will now be able to assistcallers to make sure their children get theright educational support to meet theirneeds.

Aled’s mum, Gaile, writes about how shebecame a JOSH volunteer:

Aled was born withan imperforate anusand a neuropathicbladder, neither ofwhich I had heard ofbefore. His firstoperation was toform a colostomyand was carried outwhen he was oneday old. He onlyweighed fourpounds whichcaused lots ofproblems; thecolostomy bagswere as big as hewas. Over the nextfew years we did alot of research intohis problems so that we could ensurethat he received the help that heneeded. As I was part of a charity forchildren with a similar condition toAled this knowledge was shared withother parents and they in turn passedtheir hints and tips on to me.

In May 2014 I heard that a newhelpline was starting up and that theywere looking for parents of childrenwith stomas; this was just the sort ofthing that I could do. In September Iwas invited to participate in the

Why I became a JOSH parentfirst training course for the new JOSHhelpline. It was an exciting time. I met

other parentsdealing with a rangeof bowel issues aswell as learning howto answer a call.

My first call wasquite a nerveracking experience. Iwanted to makesure that what I saidwould help thecaller; I didn’t wantto put my foot in it.A short time into thecall, however, it allbecame natural, andI remember feelingreally proud that Ihad been able toprovide the caller

with useful information.

Since that first call I have hadnumerous other calls. Some havebeen for information for exampleabout coping with a stoma whileaboard an aeroplane. Others havebeen from parents with children whowere about to have stomas. Eachtime I was able to help the caller insome way by giving them either theinformation they were after or just

the reassurance that they weren'talone. n

Junior Ostomy Support Helpline (JOSH)

Ji

Jr

oin

uO

ym

otsS

tro

pp

uH

.deri

uqer

siti

neh

wtr

op

pus

lan

oito

mede

deen

hcu

me

divor

psreet

nul

ovt

nerap

detacide

df

omaet

detcelesyllaice

psr

uO

.seussi

red

dalb

role

wo

bhti

wner

dlihc

fo

sreracr

ost

nerap

rof

elbaliava

sie

nilple

hsi

hT

enil

ple

:e

nilpl

eh

ru

oh–

42

75

24

82

30

08

0

ku.

gro.

noit

aicoss

ay

mots

oloc.

ww

wA

Q4

1G

Rg

nidae

R,teertS

no

dn

oL5

9,es

uo

Hesir

pretnE

noitaic

ossA

ym

otsol

oC

eht

fo

trap

siHS

OJ

Ji

Jr

oin

uO

ym

otsS

tro

pp

uH

.deri

uqer

siti

neh

wtr

op

pusla

noit

ome

dedee

nhc

um

edivor

psreet

nulov

tnera

p

detacide

dfo

maetdetceles

yllaiceps

ruO

.seussi

red

dalb

rolewo

bhti

wner

dlihc

fosrerac

ro

stnera

pr

ofel

baliavasi

enil

pleh

sih

Te

nilple

:enil

pleh

ru

oh–

42

75

24

82

30

08

0

o

ku.

gro.

noit

aicoss

aym

otsol

oc.w

ww

AQ

41

GR

gni

daeR

,teertSn

od

noL

59

,esu

oH

esirpret

nE

noitaic

ossA

ym

otsol

oC

eht

fo

trap

siHS

OJ

ty

pp

otetale

enilple

.tnera

otksa

dn 7

J

i

J

roinuO

ymots

S

troppuH

.deriuqersi

tineh

wtroppuslanoito

me

dedeenhcu

medivorp

sreetnulovtnerap

detacidedfomaet

detcelesyllaicepsru

O.seussi

reddalbrolewob

htiw

nerdlihcfosrerac

rostnerap

rofelbaliava

sienilpleh

sihT

enilple :enil

pleh

ruo

h–42

7524823

0080

o

ku.

gro.noitaicossay

motsoloc.w

ww

AQ4

1GR

gnidaeR,teertSnodnoL

59,esuoH

esirpretnE

noitaicossA

ymotsolo

Cehtfo

trapsi

HSOJ

typpah

otetaler

yenilple

H.tnera

otks

752

ku.

g 17

Ji

J

roinuO

ymots

S

troppuH

.deriuqersitinehwtroppuslanoito

me

dedeenhcu

medivorpsreetnulovtnerap

detacidedfomaet

detcelesyllaicepsruO

.seussi

reddalbrolewobhtiw

nerdlihcfosrerac

rostneraprof

elbaliavasi

enilplehsihT

enilple:enilplehruoh–42

7524823

0080

oku.gro.noitaicossay

motsoloc.w

ww

AQ41GR

gnidaeR,teertSnodnoL

59,esuoHesirpretnE

noitaicossAy

motsoloCehtfotrapsi

HSOJ

typpah

otetaler

y

enilpl

752ku.gro.n 1743111.o

T I D I N G S | W I N T E R 2 0 1 6 | 4 3| W E B S I T E : W W W . C O L O S TO M YA S S O C I AT I O N . O R G . U K

S U P P O R T C A FA C E B O O K


One morning, after a restless night, Idecided to visit the CA Facebook group tosee if there was anyone interested inhaving a mini meet in Perthshire.

By coincidence, Jo Jones posted at the sametime asking if anyone was interested in ameet up for coffee in Livingston inMid–Lothian! Great minds and all that. I gotno response for Perthshire, but Jo got sometakers for Livingston. While chatting to Jo Iasked how she felt about travelling toGlasgow and discovered that this was finewith her as Perth and Glasgow are about thesame distance from where she lives but inopposite directions, so this seemed like apossibility. Next step was to have a look atIan Jackson’s members’ map of the Facebookgroup. This showed a bigger cluster ofmembers who could access Glasgowreasonably well and, hey ho, off we go.

I posted an initial enquiry on the Facebookgroup to see if there was any interest andwas so pleasantly surprised by theresponse. Not just from members wantingto join in but lots of support from membersin other areas who have organized similarmeet ups and had such a great time. Thatreally encouraged me to get on with it.

We settled on the date and booked aconvenient restaurant which wasreasonable and cheerful. When it camedown to the final count we had 14members all willing to travel to meet upwith each other, which I thought wasabsolutely brilliant. Not only that, but therewere lots of others who were sorry theycouldn’t make it but wanted to be keptinformed of any future meet–ups or events.

The day before the event I got everythingorganized (or so I thought!) checked thebooking, wrote sticky labels as name tagsfor everyone, even doing one for Tomas, theCA Facebook group bear who was verygraciously joining us courtesy of MargaretSmith from Edinburgh who ‘adopted him’recently when she won him in a raffle at the

Facebook Group Scottish Mini Meet-Up

in Glasgow Wednesday 16th September 2015

Colostomy Association open day inReading.

I set my alarm for an early start and thoughtthat was that! I left in enough time so that Icould get to the venue early to greeteveryone, but due to various hiccups likeforgetting the batteries for my hearing aids(had Hubbies of course, but not mine) so Ihad to go back! Then back on the roadagain, I got held up with a tractor and aspilled load and, of course, it was blockingthe dual carriageway at a point I couldn’tget off and around it! I eventually arrived avery flustered 15 minutes late instead ofearly, but, lovely ladies that they are, theyhad all organized themselves at the table,introduced themselves to each other andwere in the middle of telling each othertheir particular stories! There was so muchchat and laughter going on that I almost feltI should just go home and leave them, butit looked too good not to join in!

The whole afternoon seemed to fly by veryquickly and we all declared what a greattime we had all enjoyed, and when werewe going to do it again? Think that tells youwhat a success it was and we will definitelybe organizing another one so keep an eyeon the closed Facebook group for anyupdates as to the next one.

Many thanks to Jo Jones for all her help andparticularly as our designatedphotographer.

We might even get enough support tomake a weekend out of it!

Una Campbell

If you would like to join the closed CAFacebook group, search “ColostomyAssociation” in your facebook search box,choose the group and when you get tothe group page, click on the join tab andone of the admins will add you as soon asthey can. We look forward to seeing youthere.


Whychoose?

Get them all



Legacy donationA gift in your Will

If you are about to make a Will, or are considering making a change to yourcurrent Will, please consider leaving a legacy to the Colostomy Association.

Your legacy could secure the Association’s future and provide continued supportto all those ‘living with a colostomy’ present and in the future.

Colostomy Association, Enterprise House, 95 London Street, Reading, RG1 4QA Registered Charity No: 1113471

S U P P O R T Y O U N G O S TO M AT E S


July sees our 10th Birthday Family Fun Dayon Saturday 9th July at Beaumanor,Leicestershire. The team at Beaumanorhave been involved with Breakaway for thelast nine years, and we’re delighted to beable to have our family fun day with them.There will be all sorts of activities, from craft,facepainting, zip wire, high ropes, cannons,rocket building, bouldering, hide and seekin the cellars, and there will also be anexhibition from all the major stoma caremanufacturers. Tickets are £5 per personand can be booked via the Eventbrite linkon the Breakaway website.

And then in August we have our secondfamily weekend of the year, from the26–29th August at the YHA National Forestin Moira, Derbyshire. The YHA is a greatvenue, with en–suite rooms and a bar onsite! We’ll be at Beaumanor for the activities,which will include things like canoeing,team games, climbing wall, and the zip wireand high ropes for the older children.

So it’s really going to be a busy year forBreakaway, but one that we are reallylooking forward to.

Sue BlackwellBreakaway Trustee

More informationabout BreakawayFoundation.

Donate online via:

http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1008990

Write to us or send adonation to:

Breakaway FoundationPO BOX 7982SwadlincoteDE11 1FB

Telephone: 01283 240253Email:[email protected] Web:www.breakawayfoundation.org.uk

Wendy explains howWendy began making pouch covers when she had problems withsoreness around her stoma. She found that cotton was best againsther skin, but the covers available on–line were not quite what shewanted and rather expensive. So, not having picked up a needlesince primary school 45 years earlier, she set out to experiment.

It was October 2011 when Wendy had her colostomy due to bowelcancer. She says that the first year of having a stoma, whilst beinga learning curve, presented no issues. At the beginning of 2014 shehad a parastomal hernia repair and the following July she decidedto put her health first and resigned from her job. Now fourteenmonths later she knows she made the right decision. Wendy livesin Norfolk and enjoys walking, swimming, Tai Chi and Pilates.

These days Wendy wears the pouch covers just for fun. She wasinvited by her stoma care nurse, to come along and exhibit hercovers and demonstrate the process of making them at a recentStoma Open Day in Norwich.

Ever thought of makingyour own pouch covers?

Wendy’s instructions of how to make pouch covers are availableby contacting the Colostomy Association on 0800 328 4257 or todownload from www.colostomyassociation.org.uk

If you have an experience or anecdote you’d like to share, orhints and tips to pass on to other ostomates e-mail or write tothe editorial team: [email protected]

We are still on the lookout for some morefantastic auction and raffle prizes, so if youare able to help us, or know someone whocan please do get in touch. If you would liketo buy tickets, please email us [email protected]

Our May family weekend is being held at anew venue, and it’s in Scotland! This is thefirst time that we’ve had a family weekendnorth of the border, and we are reallylooking forward to it. Our families havebeen telling us that they’d really like aweekend in Scotland as there’s a lot ofthem living there, so we hope that lots ofthem will be able to join us. It is the27–30th May, at the Belmont OutdoorCentre, Meigle, near Blairgowrie. If you arein Scotland and have a child aged up to 18with a stoma and you’d like to join us,please do email for a booking form.

We’re busy looking forward to our tenthbirthday celebrations in 2016. It’samazing to think that an idea that Juliehad one evening has grown and becomeso successful. Looking back at thechildren that came to the first Breakawayweekend it’s wonderful to see how wellthey have done, and how they reallyhaven’t let their stomas hold them back.

We’ve lots of exciting things planned tocelebrate, and we’d love it if some of youcould join us. It all starts with our 10 YearAnniversary Gala Dinner on Saturday 7thMay at the National Brewery Centre inBurton–on–Trent. Tickets are £40 a headwhich includes a three course meal withwine. We are also having an auction andraffle, and are delighted that Duncan Wellshas agreed to be our master of ceremonies.

L I V I N G W I T H A S TO M A H E L P L I N E C A L L S


The Colostomy Association’s helpline isone of our most–loved and most valuableservices. Anyone in need can call 0800328 4257 at any hour of the day to be putthrough to a member of our staff orsomeone living with a stoma.

If you dial 0800 328 4257 during officehours on a weekday, your call will be takenby one of the staff at the ColostomyAssociation office. They will be able toanswer your questions, or point you in thedirection of someone who can. The officestaff can also provide practical advice andsend out any leaflets which might help (orsuggest you download them from theColostomy Association website). If it isappropriate they will ask if you would liketo speak to someone else who has a stomaand if you agree they will take yourtelephone number and details of when youare likely to be in to take a call. Thisinformation will then be passed on to oneof our 100 volunteers who will call you assoon as they can.

When Colostomy Association office closesat 5pm the helpline is transferred to one ofour helpline volunteers, who will keep theline until 9am the next morning when it willbe transferred back to the office. Similarlyanything from one to four volunteers willman the line in shifts over the weekend.These volunteers will be at home getting onwith their normal evening, Saturday orSunday activities, be it watching thetelevision, weeding the garden, surfing thenet or walking the dog. They will, however,be happy to stop what they are doing andlisten to your concerns, answer anyquestions or give non–medical advice oncoping with a stoma. What they can’t do isgive medical advice and if this is requiredthey will suggest you contact your stomacare nurse or GP or, if the problem cannotwait until they are available, dial 111.

We receive thousands of calls each year ona huge range of topics and issues. Take alook behind the scenes of one of ourflagship services and find out why ourhelpline is so valuable for people in need.

Typical callsQ: I was told today that I will need an

operation to form a colostomy. Thedoctor said he would arrange for me tosee a nurse who would explain all aboutit. But I need to talk to someone now. Idon’t know much about colostomiesexcept that my grandmother had one;she never went out, and it used to smell.

A: Like yourself, many of us facing stomasurgery are concerned that their life willnever be the same but in most cases wefind we can do everything we did beforewe had a colostomy; return to work andresume our normal activities andhobbies. However, you will need to giveyourself time to recover from theoperation and get used to managingyour stoma.

Ostomy care has moved on since yourgrandmother’s time. Stoma pouches arenow small and discrete and have specialfilters to ensure there is no odour. Thereare about 120,000 people who have acolostomy or other type of stoma in thiscountry. You will have passed them inthe street, sat next to them, spoken tothem and never guessed they werewearing a stoma bag. So no one willknow that you have a colostomy…unless you choose to tell them. Andtoday more and more people arechoosing to speak out and increasepublic awareness.

You will no doubt think of morequestions over the coming weeks so wewill send you a copy of our leaflet How

will a Colostomy affect me. Please feelfree to ring our helpline at any timeeither before or after your operation; outof office hours ie in the evening and atweekends, it will be answered by avolunteer. All our volunteers have acolostomy themselves and we can alsoarrange for one of us to visit you at homeor telephone you at a prearranged time.

Q: Last week I had a colostomy formed dueto Crohn’s disease and have only justcome home from hospital. When I takea shower, should I leave my bag on orcan I take it off?

A: Water will not harm the stoma andcannot normally enter the body via thisroute so you can bathe and shower withthe pouch off. However, it would be bestto leave the bag on for the first fewweeks until healing is complete and thestitches have dissolved.

After that it can be a pleasant, cleanfeeling to bathe or shower while notwearing a bag, and it is also beneficialfor the skin. When you have becomemore confident in managing your stomaand have developed a routine you willbe able to identify the times when thecolostomy is unlikely to be active, forexample before rather than after a meal,and plan to have a bath or shower then.

Q: Is it OK to go swimming when you havea stoma?

A: Yes, swimming is excellent exercise foran ostomate. If you are worried that yourbag will come off in the water, thendon’t be. The adhesive is designed to bewaterproof and all that will happen isthat if you are in the water for a longtime it might become a little bit soggyaround the very edge of the flange, butit will not come off. Semi–circular

“I was told today that I will need an operation to form

a colostomy. The doctor said he would arrange for

me to see a nurse who would explain all about it. But

I need to talk to someone now. I don’t know much

about colostomies except that my grandmother had

one; she never went out, and it used to smell. “

“Is it OK to go swimming

when you have a stoma?

“

“I ordered my supplies lastweek and they still haven’tarrived. It’s the weekend. Ionly have a couple of bagsleft. What shall I do?

““Last week I had a colostomy formed

due to Crohn’s disease and have only

just come home from hospital. When I

take a shower, should I leave my bag

on or can I take it off? “

L I V I N G W I T H A S TO M A H E L P L I N E C A L L S


shaped pieces of adhesive called flangeextenders can be stuck around theflange to give you added confidence thefirst time you venture into the pool orthe sea.

Maybe you are worried that otherswimmers will notice the outline of yourbag beneath your costume. They won’t,but, if you are concerned, you canalways choose a patterned costume orwear a support waistband beneath it.There are companies that makeswimwear specifically designed withextra support or with an internal pocketfor ostomates and we can send you a listof contact details if you wish.

While in the water you may prefer to usea smaller version of the pouch younormally use or a stoma cap. A plugwhich can be worn for a short time bysome colostomates is also available butyou need to check with your stoma carenurse that this is suitable for your type ofstoma.

Unless your pouch is empty it is best tochange it just before going in the pool.It is a good idea to have one of the stickypatches, which you will find in your boxof supplies, over the filter while you arein the water. This will prevent the filtergetting wet which can make it lesseffective in releasing any wind later on.

Food entering the stomach stimulatesthe gut into action, so for everyone, not

just ostomates, it is best not to goswimming too soon after a meal.

Q: I ordered my supplies last week andthey still haven’t arrived. It’s theweekend. I only have a couple of bagsleft. What shall I do?

A: Is there a possibility that you might haveput some bags in the car, just in case, orperhaps in a handbag that you don’t usevery often? Do you take drainable bagswith you on holiday and bring themback unused? If you can’t find any bagsyou’ve forgotten about and you can’tcontact your supply company then thebest thing to do is to ring the localhospital. If you had your operation therethen ask to be put through to the wardwhere you were an inpatient. Otherwiseask for the colorectal or surgical ward.Explain your problem and ask if theycould let you have a few bags to tide youover. They may not be the type of bagsyou normally use and you, or a relativeor friend, will have to go to the hospitalto collect them. Another option is to trycontacting a local support group as oneof their members may have a fewsuitable pouches to spare.

Delivery companies now have to receiveyour prescription before they areallowed to send out stoma supplies. Thismeans that, especially if the deliverycompany request the prescription, it cantake two weeks or more from making arequest to receiving your supplies.

Therefore ostomates are advised toplace a new order as soon as they getdown to three weeks supply.

Q: A friend had an operation for cancer afew months ago and will shortly becoming to stay with me for a few weeks.She now has a colostomy so I waswondering about meals and what shewill be able to eat and if there isanything I should do to make her staymore comfortable.

A: There is no special diet for people witha colostomy and as your friend had theoperation a few months ago she is nowprobably enjoying the same foods thatshe ate before she had the operation. Itwould probably be best to ask her ifthere are any foods that do not agreewith her so you can avoid them whileshe is staying with you. Many ostomatesfind that eating regular meals helps toregulate their colostomy and some findit best to have their main meal at middayrather in the evening so you could askyour friend about her normal eatingpattern.

Your friend will probably need to disposeof her used appliances, wrapped up inspecial disposal bags she will bring withher. If you have a bin with a lid in thebathroom she could use that, oralternatively she may prefer to take themoutside and put them straight into thedustbin. n

The ColostomyAssociation

Helpline

F R O M H E A LT H C A R E P R O F E S S I O N A L S Y O U R Q U E S T I O N S A N S W E R E D


Q: I had an operation for bowel cancer onthe 29th June and joined the ColostomyAssociation when I returned home fromhospital. I have found the articles in theTidings magazine very useful and wasespecially interested in the article aboutirrigation and pancaking. As I sufferfrom pancaking I am contemplatingirrigation. I am concerned that usingirrigation could cause an infection in thestoma. Have any osomates had anyproblems relating to infection?

A: Infection with the use of stomalirrigation is unusual. It is a cleanprocedure and as long as the equipmentis cleaned and stored in a clean area andthat you wash your hands before andafter the procedure you should not haveany problems. I would suggest seeingyour local stoma care nurse to discussthe benefits of stomal irrigation. If theyfeel it is suitable for you then they canorder the equipment and arrange to seeyou to train you in the technique. I haveseveral patients who use this verysuccessfully. Good luck.

Q: In March 2003 I had a resection of therectum after being diagnosed withbowel cancer. As a result, from that timeI have had a colostomy bag. From a

cancer point of view the operation wassuccessful, but there have been twoparticular ongoing problems, whichhave proved impossible to deal witheffectively; discharge from what remainsof my backside which has continuedintermittently in varying quantities overthe last 13 years, and pain from thearea that was operated on for the sameperiod.

As to the discharge, my consultant tellsme when I raise the matter on anannual basis that nothing can be doneand I just have to put up with theproblem and manage it as best as I can.As to the pain, three years ago I saw apain management consultant whooffered a number of options, only one of

which was acceptable to me. This wasvia a TENS pain relief unit which bringssome relief, but only for 20 minutes orso after a 30 minute session.

The purpose of this email is to seewhether the Colostomy Association,with its wide experience, can offer anysuggestions to resolve or at leastalleviate my two problems, in particularthe discharge?

A: These are common following the sort ofsurgery you have had. Most peoplemanage to control the pain withdifferent medication or treatments to alevel that they find able to live with. Ifyou have not reached this stage withregard to the pain it may be worthdiscussing other options with yourconsultant. A further review with thePain Management Team would also beof use.

With regard to the rectal discharge this issomething that again people manage indiffering ways. Some people find ithappens so infrequently that they canmanage without any treatment at all.However, if it is troublesome then it maybe that using a glycerine suppository onoccasion to clear the back passagewould be of benefit. This can be throughyour GP. If the discharge is frequentsome patients find the use of theColoplast Anal Plug useful but this mustonly be used once you have beenreviewed by your local stoma care nurseto see if it is suitable for you and manypatients find that the feeling of fullnessin the rectum that it causes is asuncomfortable as the discharge. Anothersolution is to see your consultant and tosee if he can prescribe some steroidsuppositories or enemas in case this isproctitis in a defunctioned rectum, or ifhe would consider removing the rectumcompletely and making it a permanentcolostomy. This last one is a very finalsolution and needs to be consideredcarefully.

Q: A year ago I had a fall and hurt mypelvis. On examination they found ahole in my bowel which they saidneeded an operation. When I cameround from the operation I found I’d hada Hartmann’s procedure.

I have constantly had this pressure as ifI want to poo all the time. The only timeI have any freedom from it is if I laydown which I cannot do for 24 hours. Ihave had a sigmoidoscopy which foundnothing wrong. On further investigationthe gastroenterologist said the pressurefeeling I am getting from the rectum islikely to be from my abdominal organs.Unfortunately this cannot be resolvedand I do not know what to do.

Dear Nurse

Julie Rust RGN. Dip, N. MSc.Clinical Nurse Specialist

Stoma/Colorectal

Royal Stoke University HospitalUniversity Hospitals of

North Midlands NHS Trust

Julie Rust became Tidings Nurse inDecember 2004. She has answeredreaders’ letters and e-mails in every issuewhich has been published since then.We look forward to many more years ofpublishing her very sound advice.

Your medical questions about stomacare management are always welcomeand important to us.

Questions received by the Editor orColostomy Association are passed toJulie Rust RGN. Dip, N. MSc. CNSStoma/Colorectal to review and answer.Answers are published in the next issueof Tidings.

F R O M H E A LT H C A R E P R O F E S S I O N A L S Y O U R Q U E S T I O N S A N S W E R E D


I have seen many doctors andtherapists. It’s alright saying that I haveto put up with it but they won’t have toput up with it for the rest of their lives.Can you please try and help me. Coulda hypnotist or acupuncture help,because I have tried loads ofmedication, suppositories etc to noavail?

A: Obviously without access to yourmedical records it is difficult to be ableto offer any advice or solutions. Haveyou discussed your concerns with yourlocal stoma care nurse or yourconsultant? They may be able to adviseas to alternative treatments or to offeryou some hope or a referral to anotherconsultant for a second opinion. I’mreally sorry I cannot offer much in theway of advice, I presume you aremanaging with the stoma without anyproblems as you do not mention any inyour letter. Good luck and I hopesomeone is able to offer you some hopeto solve the distressing problems you areexperiencing.

Q: I was diagnosed with colon cancer in2009 and had an operation in May ofthat year (Anterior resection – rectalcarcinoma). Since then I have sufferedwith pain in my bottom. I have readletters from other readers of themagazine who feel pain when they sitdown whereas I experience the painwhen I am standing up.

I have tried numerous pain killers. I amcurrently taking Oxycodone, Tramadoland Paracetemol.

These help a bit but the pain is alwaysthere, except when I sit down. I havetried acupuncture and electric shocktreatment with no improvement.

I went to see a surgeon in Bristol whospecialises in the pelvic area. He saysthat it would be too risky to carry out anoperation because of the operations Ihave had in that area. I had my bladderremoved about three years ago. I can’thave an MRI scan because I have apacemaker fitted. The surgeon doesn’tthink he would learn anything from itanyway.

The question is – has anybody elseexperienced the same problem and if sohave they been successfully treated forit?

A: You have obviously done a lot ofresearch and seen several people in anattempt to find a solution for yourproblems. It is difficult for me tocomment on any individual case as I donot have access to your medical records.

You do not mention any other problemssuch as bleeding or discharge from therectum but if there are any then I wouldsuggest you get a medical review to seeif this has any cause.

A referral to a specialist with an interestin pelvic floor may also be useful asthere are many things now which can beused to treat Anterior ResectionSyndrome and your GP can arrange this.I also wonder if the use of specialsupport to provide a pressure pad in therectal area would be of use as you saywhen you sit down the pain anddiscomfort disappears. If this is an areayou wish to explore then a companycalled CUI International can makebespoke supports. I hope you manageto find a solution for your problems.

Q: In the autumn edition of Tidings acouple of people have written in abouttrouble with blockages caused byadhesions.

I had bowel cancer two years ago andended up with a colostomy. In the lasttwo years I have been admitted tohospital four times with blockages. Theonly treatment is pain relief andhydration through a drip as I am unableto drink fluids because of the vomiting. Ifind that there is not a lot of knowledgeabout blockages and the working of thedigestive system out there.

Some stoma nurses advise that I shouldbe able to eat normally but the last timeI was advised to have a low fibre diet.This appears to work for me; my lastblockage was March this year. Fingerscrossed. I am writing as anyone in asimilar position might want to try a lowfibre diet.

A: Thank you for your comments about yourexperiences with bowel blockages. Ihope you have found the solution whichworks for you. It is always good to speakto people like yourself who are the true‘experts’, living with a stoma on a day today basis. Some people who have hadblockages do find that a low fibre dietworks for them and it is always worthtrying but the solutions are often foundon a patient by patient basis. Somepatients find dietary changes help, othersfind the problem settles with intravenousfluids and nil by mouth (obviously if theblockage keeps recurring then this is nota long term solution) and some peoplefind surgery to relieve the cause of theobstruction is necessary. Good luck forthe future and hopefully you have foundyour solution. n

Editors Comment

Have you got a medical question or a query

about stoma care managementfor Julie?

If so, write in and tell us:

The EditorColostomy Association

Enterprise House95 London StreetReading RG1 4QA

or e-mail your query to:[email protected]

What kind of stoma do you have?

When food leaves the stomach it entersthe small intestine, a long coiled tubeabout twenty feet long. The last part ofthe small intestine is called the ileum. Ifthe ileum is brought out through theabdomen to form a stoma (ostomy), thisis called an ileostomy.

Five facts about an ileostomy• The name comes from combining

the words ileum and ostomy.• It allows faeces to leave the body

without passing through the largeintestine (colon).

• It is usually on the right hand side.• The output tends to be fairly liquid –

the consistency of porridge or thicksoup.

• A drainable bag is used and emptiedfour or five times a day.

Normally digested food passes from thesmall intestine directly into the largeintestine or colon. If the colon is broughtout through the abdomen to form astoma (ostomy) this is called acolostomy.

Five facts about a colostomy• The name comes from combining the

words colon and ostomy.• It allows faeces to leave the body

without passing through the anus. • It is usually on the left hand side.• The output tends to be formed and

firm. • A closed bag is used and changed as

necessary.

The above applies in most cases, butthere can be exceptions. For example,sometimes it may be easier for a surgeonto create a colostomy on the right handside. The output from some colostomiesmay be fairly liquid particularly if only asmall amount of colon remains. Thereforesome colostomates may prefer to use adrainable bag.

YO U R L E T T E R S A N D E - M A I L S


Dear EditorI was interested in the article in Issue 39of the Tidings about pancaking anddecided to try the stoma bridge productsuggested by BM, Opus Healthcare kindlysent me a few samples of the small size.However, I found difficulty in positioningthe stoma bridge in the pouch with mychubby fingers so I decided to usetweezers.

Firstly, hold the stoma bridge with thetweezers and pinch in the sides. Second,remove the backing paper exposing thesticky side. Next open the pouch and withthe tweezers position the stoma bridge tothe side of the pouch. When in the rightposition, press firmly on the pouch tosecure the stoma bridge with the tweezersstill holding the bridge. Withdraw thetweezers and repeat the process on theother side. Finish by pressing down firmlyon the pouch so that both stoma bridgesare secure.

I hope this tip will help fellow users ofstoma bridges.

RegardsMike Lansdall

Dear EditorIn the Autumn 2015 issue of Tidings thearticle From One Ostomate to Anotherdiscussed Pancaking. Good ideas weresuggested, including Ian Jackson’s list of 5top answers.

One big help I find for pancaking and stomamanagement overall is a glass of prunejuice with breakfast. Tesco have thecheapest, but most supermarkets stock it.The quantity required will depend on onesdiet at the time – small amounts forvegetarian or healthy diet, more for a higherfat content diet.

This reduces solidity, increasing fluidity,making the bag contents much moremobile and it is easier to empty the bag.Get to diarrhoea symptoms and you’ve hada little too much prune juice.

Hope that this helps – I suffer immediatelywhen the dose of prune juice is missed.

RegardsPH

Dear EditorI was advised to consider irrigation by mystoma care nurse. It is the best thing I havedone. I have had my stoma bag for over 18months and have always felt uneasy atgoing out to social events, even lunch, incase it performed and needed attention.Since I started irrigation I have enjoyed lifeto the full again.

With the help of my stoma nurse, I amtrying, to set up a local group within a 20mile radius of the Royal Surrey Hospital. Anyhelp would be appreciated.

Thanks RY

Dear FriendsThis seems a good place to air twodifficulties which I encountered beforeand after my stoma surgery in July of thisyear.

Firstly, an information book of colostomyhints and tips produced by a manufacturerof stoma appliances carried anunfortunate story of an ostomate who hadall kinds of post op complications. Hecouldn’t sit for six months, required threefurther ops etc I read this book theevening before my operation and it didNOT fill me with confidence or addanything positive to my experience – quitethe opposite. This sort of information canbe given as required by the surgeon as heoutlines the procedure to the individual,should he need to.

Secondly, although well prepared by thestoma nurse, it was still not a pretty sightto stare solemnly post op at thistransparent, bloody bag on top of a cherrycoloured lump, over which I had littlecontrol. When faeces came in this becamebrown. I cannot describe my feelings tohave all of this so visible. Ever practical, Iwould like to make a suggestion to beadopted in hospitals. I recognise the needfor staff to monitor the contents of the bagand colour of stoma etc so the bag needsto be transparent. Could I suggest adetachable, opaque sort of hot waterbottle cover which could easily be

Readers’ writesDo you have a story to tell, experiences orconcerns to share with other ostomates,issues to raise? Maybe you havecomments and suggestions about Tidings.Write in or e-mail us today. The editorialteam looks forward to hearing from you.

Rosemary Brierley



removed for inspection? This would tick allthe boxes, I think.

Many thanks.

Yours sincerelyMRC

Dear EditorWith regard to the Autumn 2015 issue no.39 article: Prescription Review.

I read this article with interest as myhusband has had his stoma some 27years, and with the excellent guidance ofhis stoma nurse, post operation choosethe product that suited him and to thisday it still does. He orders his equipmentas required because, as you’ll appreciate,the function of the stoma and his health,determines how many bags and seals hegoes through in any given month.Therefore he does not stockpile, indeedwe would not have the room toaccommodate more supplies.

I don’t know if any of your readers orstoma nurses have encountered this butthe company we use, who are good, havetaken to ringing to ask if he needssupplies, can they put him on anautomatic renewal system. He declines asthis would mean for him that he felt lessin control and it would not meet hischangeable needs and could/would resultin stockpiling.

I just felt the need to bring this to yourattention as on first observation this offerfrom the company would appear to bemost helpful, which I am sure for someostomates it is. However, it can encouragestock piling.

With kind regards Sue Smith

Dear EditorI have read your article PrescriptionReview (Tidings Autumn 2015). As amember of the PRG (Patient ReferenceGroup) at my GP surgery and as someonewho follows closely the work of the CCG(Clinical Commissioning Group) in thearea in which I live, I found it veryinteresting.

Although I have had a stoma since May2009, I had not really felt the need tomake contact with a stoma care nurse formore than five years. I did some researchon the trust with reference to stoma careand found from a published freedom of

information request that the trust had notemployed any stoma care nurses in any ofthe last four years. Further research revealedthat a contract for stoma care had beenawarded to one of the stoma productdelivery companies.

I decided to try and speak to the stoma caredepartment at the hospital which wasresponsible for my original diagnosis andsurgery and was delighted to be contactedby one of the stoma care nurses with whomI had dealt in 2009, and who in fact haddone the original home follow up after mydischarge. At this time she was employedby the NHS Foundation Trust albeit withsome financial support from suppliers. Sheconfirmed that she and her colleagues inthe trust are now all employed by a deliverycompany. She had also read the article andagreed that a great deal of over prescribingdoes take place especially in such items asadhesive removers and barrier products.She also advised me that the stoma careteam of which she is part offer a service toGP surgeries where they can assess all ofthe patient records within a practice wherestoma care products are prescribed andidentify the possibility of over prescribing.

From my own personal point of view thereare two things which I find disturbing. FirstlyI find it difficult to accept that any companywith a commercial interest in supplyinggoods would want to be proactive inreducing the quantity of such supplies, andsecondly that so many patients receivesupplies on a regular basis without havingto request same. This must surely lead toover prescribing as to avoid any problemssuch a prescription must have sufficientquantity to avoid running out during anygiven period.

I, like many patients request my suppliesthrough a delivery company which thenrequests a prescription from my GP surgery.On my repeat prescriptions list there arejust two items, pouches (which are on everyrequest), and adhesive remover wipeswhich I have only requested once in the lastsix deliveries. The last time I orderedsomething outside of these items it wasquestioned by the delivery company andsubsequently confirmed by my GP surgery,surely this is the way to deal with all suchrequests and therefore cut down on overprescription?

Kind RegardsJohn Constable

The EditorI read with interest the article in theAutumn edition of the magazine, and sawwith horror (but not undue surprise) thephotos of wastage at the end of thearticle.

Recently I had cause to visit my localstoma clinic at Hythe near Southamptonand, piled high in a corner, was a moundof returned, unwanted stoma bags. WhenI commented on this to the nurse, shesaid that occasionally they were collectedto send to a needy country. I said that Iknew of a lady at my local church, whowould soon be going to the Ukraine. Iasked if it would be feasible for them togo there and, on making further enquiries,was told this was alright. My friend saidthey would be very gratefully receivedthere, so my husband and I filled twolarge black bin bags with the bags whichwe had taken from their boxes.

I know the bags will be used withgratitude, but surely it would have beenbetter if the bags had not been ordered orprescribed in the first case and thusavoided any unnecessary cost to the NHS.

Concerned WH

Dear EditorFirstly I would like to say a big thank youto all the wonderful people who give theirtime so there is always help out there, andfor publishing Tidings which I love toreceive and read from cover to cover.

The story from Tim Harvey really touched mein the fact that he could not talk about it.

I myself am quite open about the fact Ihave had three different cancers: breast,skin and bowel with very many otheroperations: varicose veins stripped, gallbladder and appendix removed, fullhysterectomy and I suffered infection in allmy ops until I started taking antibioticsprior to the op.

However, my biggest problem now is notmy colostomy as I am happy with mypouch but I am so unfortunate that themesh that was supporting the remainingbowel has collapsed and I have aparastomal hernia which is souncomfortable. I am 85 years old orshould I say young!

EML


Readers’ writes

N O T E B O O K H E L P F U L O S TO M Y S U P P O R T G R O U P S & O R G A N I S AT I O N S


Helpful Ostomy SupportGroups & Organisations

• IA The Ileostomy and Internal Pouch Support GroupFreephone: 0800 0184 724www.iasupport.org

• UA Urostomy Association Tel: 01889 563 191www.urostomyassociation.org.uk

• IOA International Ostomy Associationwww.ostomyinternational.org

• Junior Ostomy Support Helpline (JOSH)24 Hour Helpline: 0800 328 4257Email:[email protected]

• Stomadatawww.stomadata.com

• Macmillan Cancer SupportTel: 0808 808 00 00Mon - Fri: 9am - 8pmwww.macmillan.org.uk

• Mitrofanoff SupportTel: 01202 937 530Email: [email protected]

• Crohn’s and Colitis UKTel: 0845 130 3344(Mon-Fri 13:00-15:30 and 18:30-21:00)www.crohnsandcolitis.org.uk

• IBS Network (formerly: The Gut Trust)Tel: 0114 272 3253www.theibsnetwork.org

• Bladder and Bowel Foundation (B&BF) Formerly Incontact and ContinenceFoundationGeneral enquiries: 01536 533 255Web:www.bladderandbowelfoundation.org

• Bowel Cancer UKTel: 020 7940 1760Email: [email protected]: www.bowelcanceruk.org.uk

• Beating Bowel Cancer UKTel: 08450 719 301 (Lo Call rate)Web: www.beatingbowelcancer.org

• Gay & Lesbian Ostomates (GLO)formerly The United OstomyAssociationWeb: www.glo-uoaa.org

• Ostomy LifestyleTel: 0800 731 4264Email: [email protected]: www.ostomylifestyle.org

Stoma Care PatientOpen Day eventdates

For a comprehensive list of Patient Open Daysevents, visit the CA website.

Listings are updatedthroughout year.

If you are not online

contact CA on:

0118 939 1537 to find out ifthere is an event near you.

Note: The ColostomyAssociation full contactdetails can be found on Page 5.




Dear EditorI would like to make a reply to Readers’Writes in the last Tidings about disabledtoilets.

I do agree that able–bodied peopleshould not use a disabled toilet. I say that,I have a colostomy and always usedisabled toilets. Important things thathave not been mentioned include theneed for a tap and basin with runningwater also soap – I have been in disabledtoilets where there is no soap. Also a largemirror hung on the wall and plenty ofshelving.

Thank you for all your good work. I doenjoy reading every word in the Tidingsmag.

JW

Dear EditorI recently visited Australia for a month’sholiday. Whilst in Melbourne I went to themain information centre as I have apermanent colostomy and needed to usethe toilet. An assistant told me the nearesttoilet was the other side of the square.When I pointed out they had disabilityfacilities nearby and showed my disabilityrights card, she inferred that I needed tobe in a wheelchair to use these facilities.

Needless to say I made my way across thesquare and changed myself with greatdifficulty. I was very disappointed with theattitude of the assistant.

Yours sincerelyJM

Sadly, many members of the publicbelieve that accessible toilets are only forthose with mobility issues when they areactually for use by people with a varietyof conditions. While the ColostomyAssociation cannot campaign forimproved facilities or attitudes abroad, weare currently championing the rights ofostomates to live in a stoma–friendlysociety. For more information please readour article on the topic which can foundon page 31 in this issue of Tidings.

Dear EditorIn the Autumn Tidings there was a letterfrom Donna Ashbrook asking for advice ifyou forget to take your supplies with youor run out of bags whilst away on holiday.

It is easy – if you get your equipment froma supplier delivered to your door (I use

Readers’ writes

Before acting on suggestions from otherostomates you are advised to check witha doctor or stoma care nurse that thiscourse of action is suitable for you.

Thank you for your letters and e-mails.Space permitting, we will print yourcontribution in the next issue of Tidingsor we may hold it over for a future issue.

To contribute to the Readers’ Writespage:

e-mail:[email protected]

or write to:The EditorColostomy Association, Enterprise House,95 London Street, Reading RG1 4QA

Please indicate if you are willing for us to printyour full name (or just your first name). In theinterest of confidentiality, if you do not give uspermission we will publish only your initials.

Editing may be required for reasons of clarityor space.

Medilink) they only need a phone call andthey will deliver wherever you are (evenabroad). No more worries when goingaway. I go away for three months at a timeeach year knowing that, if I havemiscalculated, they will get them to me.

RegardsBarbara Brown

It is a good idea to take your deliverycompany’s contact details with you if youare going on holiday. However, theColostomy Association recommends thatyou plan adequately before you leave andnot rely on receiving supplies while abroadas this cannot be guaranteed, even if yourdelivery company is told about your trip inadvance. If you are going abroad for anextended period and are unable to carry allyour supplies with you, it might be worthasking your delivery company if they areable to send your supplies in advance. Ifyou are staying with relatives or friends thiswould give you the opportunity to checkthat they have arrived before you leave.

Dear Tidings

Although I am 80 years old I lead an activelife and in normal circumstances mycolostomy does not interfere with myday–to–day activities. I even manage tovolunteer my services at ColostomyAssociation Head Office to help withurgent mailings!

Michael Weller


Your badge ofhonour – wear

with pride.

In Issue 38 of Tidings I was drawn to anarticle by Jennie Burch on Prolapse andRetraction. As I read I realised that I wasone of the 3% having a prolapse! In fact,since my successful bowel canceroperation a little over four years ago, Ihave had three prolapse revisions – themost recent, and final, in late August.

I had lived quite comfortably with mystoma and the first two minor correctiveoperations but the third developed into asemi–emergency. My stoma had extendedto over four inches and I could notmanipulate it back inside my body. The tipwas black and enlarged – just like thepicture in the article. My stoma nursequickly arranged an appointment with myhospital oncology department. Theconsultant told me that the main body ofthe exposed colon was very healthy butthe end had “died”.

I was admitted to hospital that sameafternoon and I was operated on thefollowing morning. Forty–eight hours laterI was home again, somewhat the worsefor wear. I had hoped that the operationwould have involved only minor externalattention to my stoma (as had happenedon the two previous occasions) but a fullbody incision had to be done to sorteverything out. It is now two months sincemy discharge and I am almost fullyrecovered with, so far, a neat andmanageable small protrusion!

C O N N E C T I O N S


Marketplace advertise your events • messages • services here

If you have a product to sell, an event to advertise or a message to communicate, you can place a small advert for as littleas £65. Stoma care nurses, if you would like to promote your Stoma Care Department, its services and events for FREE, thenjust get in touch; Contact – [email protected]

Pelican Healthcare Exclusive MeetingThe Quay Arts Centre, 15 Sea Street,Newport, Isle of Wight PO30 5BDJan 19th 2016 – 11:00am – 2:00pmTel: Kacie Morgan 0800 318 282Inaugrial MeetingStoma Support GroupIvy Bush Royal Hotel,Carmarthen, SA31 1LGMar 7th 2016 – 7:00pmTel: Iris Williams 01267 227 916Coloplast EventBankfield Hotel,BingleyJan 26th 2016 – TBCTel: Karen Sutcliffe 07469 144 054Salts Coffee MorningThe Library, 96 Shenley Road,Borehmwood, Herts, WD6 1EBJan 28th 2016 – 1:30pm – 3:30pmTel: Barbara Milleret 07741 606 360

Cambridge University HospitalThe Hexagon – The Frank Lee Centre atAddenbrooke’sApr 23rd 2016 – 10:30am – 2:30pmTel: Stoma Care Team 01233 216 505

Friarage HospitalMowbray Suite, Golden Lion Hotel,Northallerton, DL7 8PPMay 17th 2016 – 11:00am – 2:00pmTel: Stoma Care Team

Coloplast EventThe Bentley Hotel, Newark Road, SouthHykeham, Lincoln, LN6 9NHFeb 22nd 2016 – 11:00am – 2:00pmTel: Careline 0800 220 622

Coloplast EventKettering Park Hotel, Kettering Park Way,Kettering, Northamptonshire, NN15 6XTMar 12th 2016 – 11:00am – 2:00pmTel: Careline 0800 220 622

Designed by Ursula Naish

For further information please Contact – Ursula Naish, 9 Oast Meadow, Willesborough, Ashford, Kent TN24 0AS Tel: 01233 640 863 Email: [email protected]

Ursula Naish designs and produces pouchcovers and waterproof mattress andwheelchair covers.

As Secretary of the UA Kent Branch sheoffers this service to raise funds for herlocal group.

Get yours from: colostomyassociation.org.uk/shop

Why choose? Get them all

Advertise yourproduct in this space

ALWAYS MENTION TIDINGS WHEN CALLING.

Contact –

[email protected]

* A

FR

EE la

pel p

in w

ill b

e se

nt t

o al

l new

Reg

ular

Sta

ndin

g O

rder

s of

£15

or

mor

e, s

et u

p fr

om 1

st O

ctob

er 2

015.

Offe

r av

aila

ble

whi

le s

tock

s la

st a

ndca

n be

with

draw

n w

ithou

t prio

r no

tice.

To

dona

te v

ia s

tand

ing

orde

r...P

leas

e fi

ll in

the

for

m, c

heck

you

r de

tails

are

cor

rect

, the

n re

turn

thi

s pa

ge t

oth

e Co

lost

omy

Ass

ocia

tion

- t

hank

you

.

Please fill in this form to make a Regular donation by Banker’s Standing Order. Check your details are correctthen return the completed form by post to: Colostomy Association, Enterprise House, 95 London Street,Reading, Berks RG1 4QA. Telephone: 0118 939 1537 if you have any queries.

Your ongoing commitment means CA can plan its services with confidence safe in the knowledge thatregular donations will be received. Help CA to reach out to more colostomates their families and carers togive support, reassurance and practical advice to those in need. With your help we really can and do makea difference - thank you!

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. For every poundyou give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with gift aid, at noextra cost to you.

I would like the tax to be reclaimed on this donation and any eligible donations that I have made in the lastfour years or will make to the Colostomy Association until further notice. I confirm that I pay an amount of IncomeTax and/or Capital Gains Tax at least equal to the tax, not including Council tax and VAT, that the ColostomyAssociation and other charities and CASCs reclaim on my donations in the appropriate year (currently 25p forevery £1 donated).

Signature: Date: / / 2015

Thank you for your gift

Thank you for your support

Registered Office: Enterprise House, 95 London Street, Reading RG1 4QA Registered Charity No: 1113471

Regular donation: I wish to make a regular contribution by Banker’s Standing Order to theColostomy Association in support of the charity and its on going work. I have completed the Banker’s StandingOrder Form below (Please tick).

Instruction to your Bank/Building Society to pay by Banker’s Standing Order

To the Manager: (Bank or Building Society)

Bank Address: Postcode:

Name(s) of Account holder(s):

Account number: Sort code:

I would like to make a regular donation* of £15 £20 £25 £50 or other amount (please state) £

monthly quarterly annually starting on the 1st 15th 25th of month: year:

thereafter until further notice. *Please state your donation amount in words:

(Please cancel any previous standing order in favour of this beneficiary).

Please pay: NatWest Bank, Market Place, Reading, RG1 2EP

Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21

Name: (IN CAPITALS)


#

Optional Information: Date of Birth: Stoma Type: Colostomy

Reason for your stoma: (Please tick) Ileostomy

Year of operation: Urostomy (NB: The optional information is not mandatory but will help the CA learn more about you – it will not be passed on to third parties)

Note:Please ensurethat we haveyour correct contact details: full name, addressand postal codetelephone number thank you

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

FREE lapel pin –with all new

Regular donations of £15 or more*

Regular donation

D O N AT I O N S H E L P U S M A K E A D I F F E R E N C E


FREE lapel pin –with all new

Regular donations of £15 or more

not actual size

Thank you for your support

Registered Office: Enterprise House, 95 London Street, Reading RG1 4QA Registered Charity No: 1113471

To m

ake

a si

ngle

don

atio

n...P

leas

e fi

ll in

the

for

m, c

heck

you

r de

tails

are

cor

rect

, the

n re

turn

thi

s pa

ge t

o th

e Co

lost

omy

Ass

ocia

tion

- t

hank

you

Single donation

Please fill in this form to make a Single donation. Check your details are correct, then return the completedform by post to: Colostomy Association, Enterprise House, 95 London Street, Reading, Berks RG1 4QA.Telephone: 0118 939 1537 if you have any queries.

Your single donation/gift makes a HUGE difference to the work of the charity – CA can reach out to morecolostomates their families and their carers with support, reassurance and practical advice. With your helpwe really can change lives - thank you.

Single donation/gift: a donation of £15 (or more) will help cover the cost of all our patient services

(Please tick.) Yes I would like to make a single donation/gift of £15 £20 £25 £50 or

other amount (please state) £ to the Colostomy Association

I enclose my cheque/postal order form made payable to the C.A. Ltd and attach the completed Donation

Form in its entirety.

Yes, I require a receipt (Please tick).

Single donations from individuals, groups and fundraising events are very welcome and greatlyappreciated. So please keep them coming, no matter how small. Just £15.00 (or more) will help

cover the cost of all our patient services.

Thank you for supporting CA – with your help – we can change lives!

Single donation: I wish to make a single donation to the Colostomy Association in support of the charity andits ongoing work. I have completed the Form below (Please tick),

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. For every poundyou give us, we can claim an extra 25p. For example, a donation of £15 becomes £18.75 with gift aid, at noextra cost to you.

I would like the tax to be reclaimed on this donation and any eligible donations that I have made in the lastfour years or will make to the Colostomy Association until further notice. I confirm that I pay an amount of IncomeTax and/or Capital Gains Tax at least equal to the tax, not including Council tax and VAT, that the ColostomyAssociation and other charities and CASCs reclaim on my donations in the appropriate year (currently 25p forevery £1 donated).


Thank you for your gift

#

My Details: Title: Name: Surname:

Address:

Postcode:

Telephone (home): Mobile:

Email:

Optional Information: Date of Birth: Stoma Type: Colostomy

Reason for your stoma: (Please tick) Ileostomy

Year of operation: Urostomy (NB: The optional information is not mandatory but will help the CA learn more about you – it will not be passed on to third parties)

Note:Please ensurethat we haveyour correct contact details: full name, address,postal code andtelephone number. Thank you.

D O N AT I O N S H E L P U S M A K E A D I F F E R E N C E


A R O U N D T H E C O U N T I E S R E A C H I N G O U T TO G I V E S U P P O R T


June Wilde, Chair of the Oldham StomaSupport Group, describes herself as a 75year old tap dancing grandma to fourwonderful great grandchildren. Shewrites about how she came to have acolostomy and founded the group 16years ago.

In 1998 I had a hysterectomy and over thenext five months I went progressivelydownhill. Eventually a surgeon decided tolook at me under anaesthetic and when Iawoke I was told I had an abscess. This laterburst and left me with a fistula between myfront and back passage.

The only solution was to have a colostomy.I was told I could have a reversal but Idecided not to because it would involve atleast two more operations and I reallywanted to carry on enjoying life. I went backto my job which I really enjoyed as managerfor the customer service department of amail order company. Then, as I wasapproaching sixty, I was offered aretirement package and I decided to take it.

Soon after the local stoma care nurses fromthe Royal Oldham Hospital held a meetingto see how many people would beinterested in attending a support group.They knew I had been in a managerialposition and was quite used to talking topeople and organising events so I was

asked if I would set this up. As I was takingmy daughter and two grandsons toAustralia for five weeks – my retirementpresent to us all – I said I would start thegroup on my return.

We have now been in existence for 16 yearsand from the first meeting we have gonefrom strength to strength. I still run thegroup with the help of a secretary andtreasurer. There are usually 30 or somembers at each meeting. Some of themare from the original first group meeting –sadly one or two are no longer with us butnot forgotten.

Our meetings are bi–monthly, in February,April, June, August, October and Decemberon the first Tuesday of the month. They areheld at Oldham’s Link Centre, a purposebuilt venue for people with disabilities tohold meetings and social events. At first weused to meet in the afternoon, but now wehave found that the evening is moreconvenient for most people so our meetingsare from 7pm till 9pm and we will have abite to eat and maybe a glass of wine.

I try to organise a supplier to come along toeach meeting so that we can keep up todate with new products. We have speakers,for example someone from NHS camealong to explain the changes to howsupplies were ordered and a surgeon took

us through the procedures of a colostomyoperation, which was interesting, but scary.Sometimes we just have an open meetingwhere we talk over problems. There havebeen many trips out over the yearsincluding several to chocolate factories(yummy) and breweries, canal boat tripsand many more.

Aside from this, my wonderful memberssupport developing countries by recyclingbras, which are sent abroad by my churchand spare appliances and other stomaitems which a friend takes to Jacob’s Wellin Beverley when she visits her son.

Our December meeting was a Christmasparty and the entertainment included a Mr& Mrs game and a music quiz. The highlightof the evening was the surprise visit frommy tap dancing club and our performanceof a tap dance routine to the song, Hit theRoad Jack.

After all that I must say to anyone thinkingof starting a group – Go for it. The rewardsare far greater than you think. You will makewonderful friends and enjoy your meetings.

Best wishes to you all.June Wilde

For more information about the OldhamStoma Support Group:

Telephone June on 0161 312 5538

If you would like to see your support group featured here, please telephone the Editor on:0118 918 0500 or send your article and photos by post to: Editor, Colostomy Association, Enterprise House,95 London Street, Reading RG1 4QA or if you prefer email your article and photos to:[email protected]

Oldham Stoma Support Group

Support Groups are places where people can share personal stories, express emotions,and be heard in an atmosphere of acceptance, understanding, and encouragement.Participants share information and resources. By helping others, people in a supportgroup strengthen and empower themselves.

Oldham Stoma Support Group June Wilde (centre) and The Tappers

S U P P O R T G R O U P S I N Y O U R C O U N T Y


England

BBedfordshire

Saturday Social ClubKaren Richards: 0123 479 2278

BerkshireE.B.O.C (East Berkshire Ostomy Club)Jackie Dudley: 0134 442 6652Reading Bowel Cancer Support GroupTed Wingrove 0118 961 8297 or 07974790 558W.B.O.C (West Berkshire Ostomy Club)Jackie Dudley: 0134 442 6652

BristolBristol Ostomy Self Support (BOSS )Janet on 01934 248 114 or Rob on0117 966 8021

BuckinghamshireMilton Keynes Stoma AssociationDee Stobie 0190 867 2918 [email protected]

CCambridgeshire

Connections Cancer & ColostomyGroupBev or Sue Scott 0135 386 0356/0776 695 8811 or Barbara Hunt 0135386 2133Peterborough Stoma Support Group -OstomisticsAlan Wright 0135 465 3290 / 0783666 1102

CheshireCountess of Chester Hospital StomaSupport GroupStoma Nurses 0124 436 6170Stockport Support GroupAngela Simpson: 0161 320 9400 /0800 652 6667Stoma Support GroupCatherine McIntosh: 0147 753 5071Warrington Ostomy Support GroupJane Shaw: 0192 566 2103

ClevelandOops GroupJulie Morrisroe/Carol Younger: 0128728 4113

Co. DurhamBishop Auckland Stoma Care GroupBetty: 0138 881 4535Darlington Support GroupSister Jacqui Atkinson: 01325 743005

CornwallCornwall Bowel Cancer Support GroupKeith Anderson: 0182 225 8618,[email protected] or websitewww.cornwall-bowel-cancer-support-group.coCornwall Ostomy SupportKen Jones: 01872 863 106 orwww.cornwallostomysupport.org.ukOstomist and Carers Support GroupChristine Davey: T: 016370 850 895 E:[email protected] or MandyRowe: 01726 832 642

CumbriaGrange Cancer Support Drop inMarie: 0153 953 3279

DDerbyshire

Diverted Local Stoma Support GroupDiane Manning: 0128 354 1311

DevonMid Devon Ostomy Support GroupJanice: 0136 377 6417 [email protected] Devon Bowel Cancer SupportGroupKaren Day: 01271 322 464

DorsetColostomy Urostomy Pouch Ileostomyof Dorset (CUPID)Jenny Pipe: 0120 274 0440Colostomy Urostomy Pouch Ileostomyof Dorset (CUPID)Beryl Andrews 0120 248 3303Colostomy, Urostomy, Pouch &Ileostomy of Dorset - CUPID (WestDorset)Colin Clare - 0130 585 3238

EEast Midlands

Newhall Stoma Support GroupDiana Manning: 0128 354 1311 orHelena: 0793 233 1850

EssexConnectLin Hart 0127 950 5273Mid Essex Stoma Support GroupPaul Foulger: 0124 522 4374, JeanetteJohnson: 0137 651 1862N.E.S.S (North Essex Stoma Support)Secretary: Brian Waller: 0120 6540449Optimistic OstomatesCarol Booth: 0170 238 5510 or AngelaTaylor: 0170 238 5509Redbridge Ostomists ClubStoma Nurses - Chris/Lisa: 020 89708321STEPSJackie: 0126 845 1937

GGloucestershire

Ladies Big Op GroupGill Hopkins: 0300 422 4363. PleaseNote: For ladies with one or twopermanent stomasVale Stoma Support [email protected] or text 0794182 7393

HHampshire

Solent Ostomates Support Group(New Forest Branch)Ron Lever 0238 089 3949 /[email protected] Ostomates Support Group(S.O.S.)Carole Summer: 0752 770 7069Southern Ostomy GroupCaroline or Karen on: 07756 819 [email protected] Urology Support GroupAdrian Kuczynzki: 07910 786 978

HerefordshireBums on Tums - HerefordshireOstomies Support GroupCarol Steele 0143 288 0656 /[email protected]

HertfordshireColoniseAnastasia 0172 776 0981Hertford Stoma Support GroupRalda: 0199 253 5311Stevenage OstomisticsJudy Colston: 0143 835 4018 /[email protected] or Alfred:0176 731 6958

Support Groups are places where people can share personal stories,express emotions, and be heard in an atmosphere of acceptance,understanding, and encouragement. Participants share information and resources. By helping others, people in a support group strengthenand empower themselves.

Stoma support groups in your county



IIsle of Man

IOM Bowel Cancer Patient and CarerGroupHeather Norman: 07624 480 973Stoma Support GroupCarole Cringle stoma nurse: 0162 4650212

Isle of WightOptimisticsCNS’s Andie Coates & AmandaBroadbridge 0198 353 4009Semi-Colon ClubTony Crowson on 01983 559 326 orCancer Clinical Nurse 01983 534 180

KKent

Ashford Stoma Support GroupCarole Hobbs: 0130 381 4014 orMargaret Webb 0123 362 8807Atoms Support GroupMaria Culleton, SCN: 0122 776 9679or 0782 799 7424Dartford Ostomy Group Support(DOGS)Tracey, John or Sue: 0794 897 4350 [email protected] Stoma Friends Group SupportJulie Bell: 0777 134 5703 or RosMarshall: 0130 482 2696 or JuneGolding (Organiser): 0130 482 2696M.O.G.S (Medway Ostomy GroupSupport)Helen Or Tracey: 0777 360 5534Maidstone Stoma Support GroupJudy/Kirsty: 0162 222 4305Royal Tunbridge Bowel CancerSupport GroupBronwen Tetley CNS: 0189 252 6111 x2287Thanet Stoma Buddies Support GroupPhil (Secretary) 0184 358 7769

LLancashire

North Manchester and Bury StomaSupport GroupJulie Meadows (SCN) 0161 720 2815or 0784 120 6910Oldham Stoma SupportJune Wilde: 0161 312 5538Tameside OstomisticlesPaul Seavers on 0777 135 9046Trafford Bowel CareJackie Carey Secretary: 0161 748 9659,Doreen: 0161 962 7818, John: 0161748 4655

LeicestershireKirby Ostomy Support Group.Colostomy, Ileostomy and Urostomy inLeicestershireJanet Cooper: 0116 239 2844 /[email protected]

LincolnshireFriends East Coast Support GroupBetty: 0120 572 4120, Sheila: 0120536 4493Grantham Support GroupBobbie/Rachel: 0147 646 4822March GroupSharon Palmer: 0741 482 8867 [email protected] Bridge and Long SuttonOstomy Group0140 635 1617

LondonBowel Cancer NewhamScyana: 0208 553 [email protected] (Ealing Stoma SupportGroup)Wendy Hetherington: 0771 733 5884Homerton Hospital Bowel & StomaSupport GroupAngela Davy: 0208 510 5318 or 0208510 7599Rectangle - Colorectal Cancer SupportGroupRegina Raymond 020 7472 6299South Woodford Support GroupNurse Christina and Lisa: 020 85356563St. Thomas’ HospitalCNS: 020 7188 5918Surrey & South London Bowel CancerSupport GroupSue Berry: 0173 755 3134 or JohnAmos: 020 8668 0796

MMerseyside

I.C.U.P.SSCN: 0151 604 7399St Helens Cancer Support GroupOffice: 01744 21831, Denys Floyd:01744 884097 or email:[email protected]

MiddlesexInside OutSarah Varma: 020 8235 4110 Bob(chairman): 020 8428 4242Semi-Colon ClubPat Black or Kathryn Foskett on 0189527 9391

NNorfolk

Kings Lynn Ostomy Friendship SupportGroupFor more info please call 0155 3691370 / 768271 / 775698StarsAnne Browne: 0160 366 1751

NorthumberlandBerwick Ostomy Support GroupBobbie Minshull: 0771 447 9320Hexham Ostomy GroupJudith on 0796 792 7286

Northumberland Cancer [email protected]

NottinghamshireNorth Notts Stoma Support GroupTore and Nicky Norman: 0177 3715460Nottingham Colostomy, Ileostomy &Urostomy support groupRosemary Brierley: 0115 982 6691Nottingham Stoma SupportJenny or Kate: 0115 962 7736/ Mrs BHeath: 0115 966 3073

OOxfordshire

Oxfordshire Ostomy FellowshipPat Longworth: 0123 552 4163

SShropshire

B.O.T.S. (Bums on Tums)Irene Constable on 0169 123 8357

SomersetDevon IAMartin Hornby: 01458 251 095 oremail: [email protected]

StaffordshireOutlookMoira Hammond 0778 840 2195

SuffolkEast Suffolk Ostomy GroupMarion Fisher: 0147 331 1204James Pagett Ostomy Support GroupSandra Hutchings: 0150 258 5955West Suffolk & District Stoma GroupJessica Pitt stoma nurse: 0163 8515525

SurreyEpsom and District Stoma SupportGroupLindsay, Trevor or Sheena: 0137 2735925

SussexBrighton & District Support afterStomas (SAS)Sylvia Bottomley: 0127 355 4407Chichester Stoma support GroupThe Stoma Care Team 0124 383 1527The Ostomy Friends GroupJane Quigley: 0132 341 7400 ext 4552West Sussex Princess Royal StomaSupportTina Walker: 0144 444 1881 ext 8318

TTyne & Wear

Gateshead Stoma Patient and CarerSupport GroupStoma Care Nurses: 0191 445 3152 oremail [email protected] Molineaux CentreGordon Weatherburn: 0191 234 1109Royal Victoria Infirmary Support GroupGordon Weatherburn: 0191 234 1109



WWest Midlands

Coventry Stoma SupportMartin: 0794 738 5643

WiltshireSwindon IAwww.swindon-ia.org.ukWessex Stoma Support GroupMichael Slater:[email protected] or on0172 274 1233

WorcestershireKidderminster & District CollossusSupport GroupBrendon Drew: 0129 940 0843

YYorkshire

Acorn Ostomy Support GroupMichelle: 0758 069 3155 (After6:00pm)Airedale Stoma SupportSue Hall: 0153 521 0483Barnsley Bottoms Up Stoma SupportGroupStoma Nurses 0122 643 2528 or CeliaUtley (Chairman) 0122 628 4262Behind You (Calderdale &Huddersfield Bowel Cancer SupportGroup)Stoma Care Nurses: 0148 435 5062Dewsbury & District OstomyJanet Edmond: 01924 512 041 or01924 512 072Leeds Bowel Cancer Support GroupLynda Castle (Colorectal NurseSpecialist) 0113 206 5535Rotherham Ostomates Caring SupportKaren Kilford: 0788 057 5758Scarborough Stoma Support GroupSister Jean Campbell: 0172 334 2388,Amanda Rowe: 0172 334 2446The Hull and East Riding ColostomySupport GroupPete Smith: 0798 956 5335 or PeteRennard: 0793 951 8642 / 0148 2793966 or Rosanna Grimsby: 0148 2801575. www.hercosg.org.uk

ScotlandAyrshire

Ayrshire & Arran Stoma Support GroupJim Krasewitz: 0129 222 0945Stoma Care And Recovery (SCAR)Maggie: 0129 427 1060/ 0781 7736147 [email protected] orRhona: 0129 455 7478

FifeFife Ostomy Support GroupIshbel Barr: 0159 277 2200

LanarkshireG66 Support GroupLes Ireland 0141 776 3866

Glasgow Stoma Support groupChairperson: Maureen O’Donnell:0123 643 6479

Scottish BordersMoray Ostomates Support GroupMaggie 01343 552 449 / Kathleen07789 684 285Stoma Support GroupNancy Fraser: [email protected] 0145 037 4012. Fiona Gentleman:[email protected] or 0145 0371063

West LothianGOSH (West Lothian)Scott Pattison: 07502 163 644

WalesBridgend

Bridgend Ostomy Patients SupportGroupAnita Brankley (Secretary) 0165 6645602 or Pat Jones 0165 678 6103

CarmarthenshireSupport GroupIris Williams:[email protected]

DenbighshireNorth Wales Ostomy Support GroupDebi Devine 0787 676 2503 / HazelDuke 0797 681 7246 / Email:[email protected]

GwentBlaenau Gwent Self HelpCelia McKelvie: 0187 385 2672 After6pmCwmbran Ostomy Support Group(COSG)Philippa Lewis: 01633 791 339 /07504 713 069

Mid GlamorganC.A.S.S Colorectal and Stoma SupportGroupColorectal Nurse Team on 0168 5728205

PembrokeshirePSA (Pembrokeshire StomaAssociation)Roy Whitfield 0143 776 0701

PowysThe Bracken Trust Cancer SupportCentreHelen Davies: 01597 823646

Rhondda Cynon TafRoyal Glamorgan Stoma Care SupportGroupDomenica Lear 0144 344 3053

SwanseaSwansea Ostomy Self Help GroupGlynis Jenkins: 0179 241 8245

Channel IslandsGuernsey

Guernsey OstomatesLuci Deane 0148 123 6077 /[email protected]

Northern IrelandCo. Antrim

Colostomy Association VolunteersNorthern IrelandChris Wright: 0772 071 7771Mater HospitalKaren Boyd - Stoma Nurse: 0289 0741211 Ext 2329Royal Victoria Hospital - BelfastSarah Haughey/Audrey Steele: 0289024 0503 Ext 3483

Co. ArmaghCraigavon Area HospitalMary Jo/Bernie: 0283 861 2721Daisy Hill Hospital Support GroupBernie Trainor: 0283 083 5000 Ext2222

Co. DownNorth Down Stoma Support GroupAdrian Ewing on 0785 074 1511Ulster HospitalHazel/Martina: 0289 055 0498

Co. FermanaghErne HospitalTo be confirmed

LondonderryCauseway Support GroupMary Kane: 0287 034 6264

Republic of IrelandCo. Mayo

Mayo Stoma SupportMarion Martyn: 094 902 1733

DublinBowel Cancer Support Group (ICS)National Cancer Helpline: (00 353) 1800 200 700 or Olwyn Ryan: (00 353)1 231 0500

FranceProvence

Stoma FranceAdrian March:+33(0)49 450 1136 oremail [email protected]

KosovoKosovo

Kosovo OstomyArta Uka: [email protected]

SpainAlicanteCosta Bravahttp://www.ostomyinspain.org/

��

�� !��

��

��

��

! "��"��#�� !��$

� � ��

��

%��&�

��!"##$%��# '(''�)*+�',+,�� "�-�� &�� ' ./)

(�� )

0& ��&� �1�� &�� &��&��&��

#��&�� 2

�� )��

It’s your choice

pelicanhealthcareltd @PelicanHealth

pelicanhealthcare.co.uk

For complimentary samples call us now on 0800 318 282All convex pouches should only be used after consulting your stoma care nurse.

Platinum Convexexperience freedom in your second skin

Introducing...

• Foam backed contoured skin protector • Soft and breathable fabric • Advanced waterproof filter system • Suitable for flush or retracted stomas • Available in Closed, Drainable and Urostomy

FREE LAPEL PIN OFFER FREE LAPEL PIN OFFER · 13 A Guide for New Ostomates Changing your pouch away...

Documents

Transcript of FREE LAPEL PIN OFFER FREE LAPEL PIN OFFER · 13 A Guide for New Ostomates Changing your pouch away...