MIND OVER MATTER CCA WINNER - Crohn’s & Colitis Australia€¦ · Be Active, Be Seen, Be Heard....

Autumn 2010

MIND OVER MATTERHypnotherapy in children See page 6

CCA WINNERFellowship announced See page 9

Magazine for Crohn’s & Colitis Australia™

SILVER

ANNIVERSARYSEE PAGE 3

CCA CELEBRATES ITS

Contents4 - 5 CCA NEWS

6 - 7 HYPNOTHERAPY IN CHILDREN

8 - 9 RESEARCH

10 - 11 ASK OUR EXPERTS

12 - 15 MY STORY

16 - 17 FUNDRAISING

18 - 19 EMOTIONAL EFFECTS OF IBD

20 - 21 ART THERAPY

22 KEY DATES

23 GENERAL INFORMATION

INSIDE INSIGHT

EDITOR Alison McClelland

CONTRIBUTORS Johanna Hood

Belinda Headon

Dr Annette Webb

Krupa Krishnaprasad

Dr Nicola Eastaff-Leung

Dr Antonina Mikocka-Walus

page 2 | Inside Insight www.crohnsandcolitis.com.au

Members who are unwellWE SEND our thoughts and best wishes to members who are ill at present, or who recovering from surgery. We wish you are very speedy recovery.

MISSION STATEMENT

CCA’s mission is to support the

Crohn’s and colitis community

with a focus on confi dential support

programs including education,

advocacy, counselling, increasing

awareness and generating and

utilising funds for research and services.

INSIDE INSIGHT SPONSOR

Crohn’s & Colitis Australia™

acknowledges the generous contribution of Orphan towards the development and printing of the CCA National Magazine. Inside Insight is published by Crohn’s & Colitis Australia™ (CCA), Copyright 2010.

Warm regards,

Francesca Manglaviti

THE new decade marks our 25th anniversary and to celebrate CCA is planning a milestone year of events and activities.

Inside Insight I page 3www.crohnsandcolitis.com.au

Welcome CEO’s

To kick off the year we are proud to announce the recipient of the fi rst Angela McAvoy AM Fellowship. After an extensive evaluation process, the Board of Directors has awarded the grant to Dr Antonina Mikocka-Walus for her project, Does cognitive behavioural therapy (CBT) improve psychological and/or clinical outcomes in infl ammatory bowel disease (IBD)? A pilot randomised control trial. We congratulate Dr Mikocka-Walus and look forward to reading updates and outcomes of her research.

Another fi rst is the launch of World IBD Day – an international event bringing together six countries over four continents in a united voice to raise awareness of IBD and its impact. The event will seek global media attention on the large numbers of people affected by these illnesses and the rate of growth of IBD across the world. A World IBD Day website will be launched, bringing together each country’s activities and information, and creating a sense of worldwide solidarity between IBD patients as individuals and between their national organisations.

To support this global event CCA has positioned World IBD Day as part of its national awareness week campaign. The theme for this year is “Be Active, Be Seen, Be Heard”, and World IBD Day is the perfect vehicle to help make this happen. You can read more on planned activities and how you can help in this issue of the magazine.

We couldn’t let our 25th birthday pass without a formal celebration in recognition of the past achievements and future goals. Refl ecting on the past 25 years, I can’t help but be proud of how far CCA has come since it was founded by Angela McAvoy AM. The organisation has grown to support people living with IBD in every state and is now able to infl uence government decisions. Even the Inside Insight magazine you enjoy today has grown from a black and white two-page newsletter typed on an old Olivetti to a full colour publication available in hard and soft copies.

In honour of our 25th year we are holding our fi rst major event - the Silver Lining Ball. The ball will be a major charity event held in Melbourne later in the year and will provide a vehicle for introducing new supporters to the cause. The funds raised from the ball will go directly towards CCA’s research fund to support ongoing research grants. See page 4 to see how you can contribute to the ball’s success. More details will be available on the website in the coming weeks.

Naturally, CCA looks forward to the next 25 years where together we will work towards providing our members and the wider IBD community with the recognition and funding they deserve.

group so members can share event management tips and cross promote their events in the wider community; and providing a fundraising kit fi lled with tips and suggestions (see pages 16-17). Contact CCA on 1800 138 029 or at [email protected] to let us know how we can best support you.

CCA will also be using its voice to promote World IBD Day (May 19) and the needs of people living with IBD. Go to www.worldIBDday.org to view the key messages and objectives, and to see what other countries are doing to promote the day. Please note, as the website is still under construction, it is not yet fully functional. However, the site will be fully live in the coming weeks, so please keeping checking.

MAKE FRIENDS WITH CCA PLEASE welcome the newest member of the CCA team – Lulu Livemore.

Lulu is our resident Facebook friend who would like to become friends with all our CCA members.

Once you are friends, you can join different Facebook groups for all the great events that are coming up and meet other members who are involved. There are already groups created for the NSW and QLD youth support camps. Other groups include Community Fundraising Network, Changing Lives Challenge Team 2010, Support Group Facilitators and Awareness Week. Lulu will keep in contact each week and send you pieces of news and information about what is going on at CCA and in the wider IBD community.

CCA respects our members’ privacy, so even though Lulu will come up on your list of friends, the contents of her page will only be made available to those CCA members who become friends with her. Once you are friends, we will not post anything on your wall or anything that will appear in your feed. All CCA groups will be “closed”, so only other group members will be able to access the content. However, the name of the group will appear in the “info” tab of your profi le.

Lulu can’t wait to make new friends, so send her a request today. You can do this by searching for the name Lulu Livemore on Facebook, or follow the link on the member-only section of our website. If you have any questions or concerns regarding Lulu, please contact [email protected].

25TH ANNIVERSARY SILVER LINING BALLTO celebrate our 25th year of service to the IBD community, CCA is holding its fi rst ever gala event. Appropriately titled the Silver Lining Ball, the high-profi le event will be a glamorous evening of fun and surprises that will showcase the organisation’s achievements over the years and introduce CCA to a wider community and corporate audience.

AWARENESS WEEK – BE ACTIVE, BE SEEN, BE HEARDSEVERAL years ago little was known about breast cancer, depression and prostate cancer. They were silent diseases shrouded in stigma. Today, these health issues have high profi les and strong funding. During National Crohn’s and Colitis Awareness Week, May 16-22, you can help put IBD in the hearts and minds of the public and politicians – Be Active, Be Seen, Be Heard.

Be Active: hold an event to promote IBD; tell your friends about IBD via Facebook or Tweet some basic facts about the disease; put a donation box in your workplace and sell CCA merchandise.

Be Seen: promote your fundraiser, event or personal story through your local paper and radio station, your workplace, school, university, community or sporting group, on intranet sites and in newsletters.

Be Heard: write to your local MP to tell them your story and why funding for IBD is so important; pledge to tell 10 new people about IBD – if all our members did this we would educate an extra 50,000 people about IBD, and if all our members’ family and friends did this, we would raise awareness across hundreds of thousands more.

CCA will support our members by providing media releases to promote events or personal stories; publicising fundraising events on our website; providing merchandise, posters and brochures; making the CCA logo available online for members wishing to replace their Facebook photo with the logo during the week; creating an awareness week Facebook

News


The funds raised will go directly toward supporting research into IBD. To help us make the evening a success, we are asking our members, where possible, to contact CCA if their workplace is able to purchase a table at the ball or is willing to consider being a sponsor of the event.

Full details of the Silver Lining Ball will be available in the coming weeks.

CCA CAMPS CCA has received strong interest from teens wishing to attend our Queensland and NSW camps.

Registration has closed for the Queensland camp, to be held at the Currimundi Active Recreation Centre in Currimundi from March 12-14.

The boys and girls attending the free camp will enjoy a number of fun activities, including a beach carnival with wet and dry games, a catapult challenge and a movie night. Three IBD nurse volunteers will also run education and support session for teenagers.

Registrations for the NSW camp at the Collaroy Centre, Collaroy Beach, from April 16-18, close on Friday, March 19. The camp is almost at capacity, so if you are interested in attending, register today by emailing fl [email protected].

CCA would like to thank everyone who expressed an interest in volunteering for the weekend. Participants will take part in a series of fun activities over the weekend, which includes a concurrent parent’s retreat. An IBD nurse will also be on site during the weekend and will run three education workshops, followed by smaller Q&A sessions with parents, siblings and teenagers.

A Facebook page has now been created for CCA and both camps (see page 4) so please join these groups and begin to make friends with other camp attendees.

BRAVE HEARTED SONEVERY mother thinks their child is special, but Shelley Rayner has good reason to be proud of her son Josh.

In January, Josh, 11, was named 2009 Young Carer in the Take 5 Young Bravehearts awards in recognition of his care of Shelley, who was hospitalised in August last year due to Crohn’s disease.

“I was only supposed to be in (hospital) for two days but it ended up being fi ve weeks. I had to have a stoma,” Shelley said.

While Josh’s siblings, Matthew, 13, and Caitlin, 7, were distressed and reluctant to see their mum sick in hospital, Shelley said Josh went out of his way to visit, as well as phoning her before and after school every day.

But it was when Shelley returned to their home in Lisarow, NSW, that Josh was able to provide hands-on support.

At fi rst Shelley was reluctant to accept her ileostomy and when her husband Martin was at work, it was Josh who would clean and change her bag, including during the night. He also helped Shelley manage her medications.

“He has always been caring but he stepped it up another notch,” Shelley said.

Shelley, who was diagnosed with Crohn’s when she was 17, said it was Josh’s positive attitude that helped her to accept and manage her ileostomy.

“I said, if he can do it I can too,” she said. “He still helps out. He unpacks my orders and he asks me if I have taken my medications.”

Shelley said the family also couldn’t have managed without the help of her other children, particularly Matthew, who helped with the cooking, cleaning and washing.

Josh was also named the winner of the Gosford City Australia Day Youth Community Award.

“We are very proud of him,” Shelley said. “It has been a very good start to the year.”

Shelley and Josh Rayner

News


ALTHOUGH infl ammatory bowel disease (IBD) primarily affects adults, it may also begin in childhood and adolescence (under18 years of age). IBD is a growing problem in the Australian adolescent population, with an increase of 0.128 to 2.0 cases per 100,000 per year over the period 1971-2001.

Adolescence is a time of transition with its own stresses, such as exams and peer relational issues, which can impact on the physical and psychological status of an individual. Adolescents with infl ammatory bowel disease face particular challenges because of the added burden of their condition.

Infl ammatory bowel disease may have a signifi cant impact on the quality of life for affected adolescents and there is an increased prevalence of anxiety, depression and anti-social behaviour in these individuals compared with both healthy controls and adolescents with other chronic illnesses.

Hypnotherapy has been shown to be an effective treatment for a number of medical conditions. It is particularly effective for gastrointestinal disorders because of the neural connections between the mind and gut (also called the “mind-gut axis”). Hypnotherapy can act via the central nervous system to modulate the three key factors known to be important in the pathophysiology of gastrointestinal disorders. It can cause a decrease in gut motility; decrease the sensitivity of the colon to various stimuli; and, it can also modulate the way the brain perceives painful stimuli by decreasing the activity of brain areas involved in the subjective experience of pain. Thus, hypnosis is used to induce a state of profound relaxation, which can modulate gut motility and/or sensation with the ultimate aim of enabling patients to control symptoms on their own.

Hypnotherapy has now recently also been shown to reduce several of the systemic and mucosal infl ammatory responses in active ulcerative colitis towards levels found previously in inactive disease. Specifi cally, hypnotherapy has been shown to have the following anti-infl ammatory effects in adults:

• Reduction in sympathetic activation - lower blood pressure and pulse rate

• Reduction in pro-infl ammatory markers - IL-6 and NK cell numbers in circulating blood

• Reduction in the rectal mucosal release of IL-13, substance P and histamine

These results in adults provide support for research to be performed in the paediatric population, where similar benefi cial anti-infl ammatory effects of hypnotherapy may be expected.

Hypnotherapy may have such anti-infl ammatory effects because of the use of specifi c “gut and immune-focussed” suggestions and assisting with improving general wellbeing and confi dence. We believe hypnotherapy may be particularly benefi cial in adolescence, as the intervention may occur at an age before the development of chronic/disabling symptoms and long-term sequelae (i.e. bowel resections). However, further research would be required to clarify this.

Can hypnotherapy help children control their IBD? Here, paediatric gastroenterologist Dr Annette Webb explains why she has launched a clinical study to discover whether hypnotherapy is a useful adjunctive treatment for paediatric IBD.


MIND OVER MATTER

WHAT IS HYPNOTHERAPY?Although there is no universally accepted defi nition of hypnosis, it is generally considered to be an “altered state of consciousness induced by a heightened state of focused attention or concentration in which the subconscious mind is particularly open and responsive to verbal suggestions”. A hypnotic state, however, has been described by Dr Milton Erikson, considered by some to be the father of modern hypnotherapy, as a “naturalistic state”. For example, we may fi nd ourselves staring at a waterfall and not have noticed the sounds all around us because we were so absorbed in the sounds and repetitive and rhythmic action of the waterfall.

Hypnotherapy, however, is a treatment modality that occurs when someone is in a hypnotic state, where suggestions are made and can be accepted by the client’s subconscious mind to affect psychological and physiological changes in themselves. When hypnotherapy is used for IBD the therapist gives the patient suggestions about how to feel better and how the bowel can be less infl amed. Through the connections of the mind-gut axis, changes can occur in the body. These have now just started to be more clearly defi ned as research continues.

While hypnosis is a natural state of being and most children may be going “in and out of” intense periods of absorption, such as daydreaming, hypnotherapy performed by a therapist can only occur with a patient’s consent. It is a misconception that the patient’s mind will be taken over. However, it is very important to make sure that hypnotherapy is performed by an appropriately qualifi ed clinical hypnotherapist that has experience using hypnotherapy with children.

WHAT HAPPENS DURING A HYPNOTHERAPY SESSION?About 80 per cent of the population can be hypnotised with moderate ease, while 5 to 10 per cent are highly hypnotisable and 5 to 10 per cent are not able to achieve a hypnotic state easily. However, studies previously undertaken by me and my colleagues with regard to irritable bowel syndrome showed that the medical effectiveness of hypnotherapy treatment does not necessarily relate to a person’s hypnotic ability.

During a hypnotherapy session, young people are asked whether they would like their parent or guardian to stay in the room for the fi rst session, but after this we generally fi nd that an extra person in the room is distracting for the patient. A recording of the session is always provided for the patient so that parents may listen to what is being said to their child, if required. The client then lies on the couch or sits in a chair. The hypnotherapist will begin with what is known as an “induction technique”, which uses words to help the child become more focused on their inner world and relax. During this time, guided imagery or progressive muscle relaxation may be used, or the child guided into imagining something of interest, such as their favourite sport or place.

The hypnotherapist then guides the patient through an individualised script. This assists them to incorporate suggestions into their subconscious mind that can change the way their body interprets unpleasant sensations, and in some studies has also been shown to alter the speed with which the bowel moves. Some patients may still feel pain, but they may not be bothered by it anymore or it may not disrupt everyday activities. For some patients, symptoms of pain and discomfort lessen or disappear either immediately or over a period of time.

RESEARCH STUDYA research study will commence this year at the Royal Children’s Hospital, Melbourne, investigating whether hypnotherapy can help with reducing children’s symptoms of infl ammatory bowel disease.

The study, to be conducted by myself, Royal Children’s Hospital Director of Gastroenterology Tony Catto-Smith, Royal Children’s Hospital Centre for Adolescent Health Director Professor Susan Sawyer, and psychiatrist Dr Katherine Sevar. This will be the fi rst research project of its kind to see if hypnotherapy can help children with infl ammatory bowel disease. Hypnotherapy will focus on the symptoms of infl ammatory bowel disease and will aim to relax and re-train the gut so these symptoms reduce. Children will have three hypnotherapy sessions over six weeks.

Children who attend The Royal Children’s Hospital for treatment of their infl ammatory bowel disease can take part in the project. We hope to recruit 20 children, aged 10-19, for the study.

For further information and a general advisory line regarding hypnotherapy you can contact the Australian Society of Hypnotherapy (ASH) on (02)97474691 or email [email protected].

For further details regarding the pediatric IBD study you may contact the IBD hypnotherapy study co-ordinator Dr Katherine Sevar by phoning 0428 678 774.

Annette Webb MBBS, FRACP, MD, Dip Clin Hypn

All study references are available upon request.

“Hypnotherapy has been shown to be an effective treatment for a number of medical conditions.”

Research


THE Australian and New Zealand Infl ammatory Bowel Disease Consortium (ANZIBDC) was formed in 2008 and currently consists of nine gastroenterology centres throughout Australia and New Zealand (see below).

The infl ammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis, are chronic, debilitating disorders of the gastrointestinal tract. The consortium’s major objective is to progress knowledge and clinical practice in the fi eld of IBD through the combination of both clinical and scientifi c research, thus improving patient outcomes.

In order to achieve this objective, the consortium is pursuing the following goals:

• A strong, collaborative IBD clinical and scientifi c network;

• A universal tracking system for patient assessment, management and treatment, including the use of biological therapy;

• A higher profi le for IBD within the wider community and within the National Health and Medical Research Council (NHMRC); and

• To regularly benchmark and collaborate with European and North American colleagues.

The ANZIBDC is guided by a Memorandum of Understanding and Material Transfer Agreement developed and passed by all members. All member sites have ethical approval to conduct the research.

Each centre contributes data and biological samples (such as blood serum, bowel tissue and DNA) to collaborative research projects. By pooling these valuable scientifi c resources, the consortium can undertake more complex and powerful research. The work of the ANZIBDC will serve

as a basis for contributing to international studies and collaborating with European and North American IBD consortia.

In 2008/9, the consortium successfully piloted a new health record and clinical research software platform specifi cally designed for the management of IBD patients. This has been supported by funding from Abbott Australasia. The program, known as Episoft, records clinical data and captures details of PBS applications for anti-TNF medications, thus providing robust long-term data on use and response. Episoft gives the ANZIBDC a unique advantage over its international colleagues, due to the uniformity of PBS applications. For further information on the system go to www.episoft.com.au. A website for ANZIBDC is being designed and will be online in early 2010.

The consortium will soon commence its fi rst major study, entitled Identifi cation and validation of clinical, genetic, immunological and microbial (bio)-markers to stratify Crohn’s disease patients by progression and complexity of disease. This will be the fi rst Crohn’s disease inception cohort study outside Europe and the US. It will be unique as it cannot be carried out elsewhere, given the design and requirements of the PBS, and the combined clinical and scientifi c approaches of the ANZIBDC.

Other projects underway include a study of inter-observer agreement for Crohn’s disease using the Montreal classifi cation, and a multi-centre study titled, The risk of skin cancer development in infl ammatory bowel disease patients on azathioprine and 6 mercaptopurine. The study of skin cancer involves patients in Fremantle, Brisbane, Adelaide and Christchurch. It aims to determine if there is an increase in the rate of non-melanoma skin cancers in IBD patients on immunosuppressants and to identify if there is a difference in the risk dependant on the latitude, UV index, hours of sunshine, patients’ age, gender and length of time on the medications.

The consortium continues to grow as further member sites will be welcomed this year.

For more information on the ANZIBDC and its projects, please contact the Consortium Project Offi cer, Krupa Krishnaprasad [email protected].

CONSORTIUM COMBATS CROHN’S AND COLITIS

LOCATION INSTITUTION PRINCIPAL INVESTIGATOR

Brisbane Queensland Institute of Medical Research Royal Brisbane & Women’s Hospital Royal Children’s Hospital

A/Prof Graham Radford-Smith

Brisbane Mater Adult Hospital Prof Tim Florin

Christchurch Canterbury Gut Research Group Dr Richard Gearry

Fremantle Fremantle Hospital Prof Ian Lawrance

Adelaide Flinders Medical Centre A/Prof Peter Bampton

Adelaide Royal Adelaide Hospital A/Prof Jane Andrews

Concord/Bankstown Concord and Bankstown-Lidcombe Hospitals A/Prof Rupert Leong

Townsville Townsville Hospital Dr Gillian Mahy

Melbourne St. Vincent’s Hospital Prof Michael Kamm

Research


BY KRUPA KRISHNAPRASAD

DOES COGNITIVE-BEHAVIOURAL THERAPY (CBT) IMPROVE PSYCHOLOGICAL AND/OR CLINICAL OUTCOMES IN INFLAMMATORY BOWEL DISEASE (IBD)?Background: Crohn’s disease and ulcerative colitis are at present incurable and their course unpredictable. As IBD is usually diagnosed in young adults, sufferers must often cope with their disease for many years. Their quality of life and psychosocial wellbeing may be profoundly impaired as a consequence of disease symptoms, surgery, medication side effects and fatigue. Thus, it is not surprising that anxiety and depression are common in patients with IBD. Moreover, psychological stress has been found to exacerbate the disease.

Cognitive-behavioral therapy (CBT) is a type of psychological treatment that has been found effective for addressing psychological problems and coping diffi culties in many chronic diseases. In some of them, such as irritable bowel syndrome, it has also been shown to signifi cantly reduce somatic symptoms (e.g. pain, abdominal discomfort). However, CBT has not been widely studied in IBD. There are no studies into the impact of CBT on the disease course in IBD, and there are only a few small studies available into the impact of CBT on the psychological status in IBD. Thus, the main aim of this study is to evaluate whether a CBT group program alters clinical and psychological outcomes in patients with IBD.

Methods: A randomised controlled trial with IBD outpatients will be conducted over a 24-month period. Over this time, patients and controls will complete questionnaires with respect to their mental and physical health and will provide blood samples to estimate infl ammatory parameters at a number of time points. The intervention group will also receive weekly group IBD-focused CBT for 10 weeks and a reminder CBT workshop about 12 months post initial treatment. The CBT program will be designed specifi cally for this patient population. For patients who cannot attend regular meetings at the particular time at the clinic (e.g. those living in remote areas or patients with small children), additional modes of CBT will be available, namely teleconference and online programs.

Predicted outcomes: This project is likely to yield tangible benefi ts for patients with IBD, which are not likely to result from medical or surgical therapies alone. A CBT intervention designed specifi cally for patients with IBD may offer a new pathway to management and treatment of IBD; may improve patients’ clinical outcomes (i.e. infl ammatory markers and disease activity), their mental health and coping; and improve long-term quality of life and well-being, reducing the need for hospitalisation and the use of corticosteroids.

Dr Antonina Mikocka-Walus, MA(Psych), PhD, MAPS

CCA’s inaugural $150,000 Angela McAvoy AM Fellowship has been awarded to Dr Antonina Mikocka-Walus for her study into whether cognitive behavioural therapy (CBT) can improve the psychological and clinical outcomes in IBD.

Dr Mikocka-Walus has an intimate knowledge of IBD, as both a clinical

researcher in the area and someone living with the disease.

Dr Mikocka-Walus, who emigrated from Poland in 2005, was diagnosed with Crohn’s disease at the age of 17.

She began to take an active interest in the important role psychology plays in chronic illness after completing her Master of Psychology in 2002.

After immigrating to Australia, Dr Mikocka-Walus undertook postings with the University of Adelaide, Monash University in Melbourne, and is currently a Research Fellow with the School of Nursing and Midwifery at the University of South Australia.

Dr Mikocka-Walus said she hoped her study would change the long-term course of IBD.

“We know there is evidence stress plays a role in IBD and the way you react to stress is important,” she said. “We can’t always modify the amount of stress we are under, but we can modify the way we respond to it.”

Dr Mikocka-Walus said it was vital patients had tools other than medication to combat the disease.

“Not every treatment is good for everyone. I hope to improve their quality of life and reduce symptoms and the chance of relapse.”

Dr Mikocka-Walus said the study, to be conducted in conjunction with Royal Adelaide Hospital’s Department of Gastroenterology and Hepatology, could have clinical applications if regular blood tests showed reduced infl ammation as a result of the therapy.

“CBT could become a standard part of treatment,” she said.

CCA Scientifi c Advisory Committee chairman Professor Peter Gibson said Dr Mikocka-Walus’ study was a necessary step in progressing the understanding and treatment of IBD.

“Such work is urgently needed to enable health professionals to learn of the value of these techniques in looking after people with IBD,” he said. “After all, managing IBD for the clinician and the sufferer is more than just what drug to take.”

FELLOWSHIP AWARDED

Research


Q: MY 14-year-old son has recently been having diffi culty with his Crohn’s disease and as a result he has not been eating well. He is already underweight and small for his age and I am worried he is losing more weight. I have read about many different diets available. Are any of them worth trying?

A: I WOULD always recommend any child living with Crohn’s disease is reviewed at least once by a qualifi ed dietitian. Children have specifi c nutritional requirements due to the various periods of rapid developments they go through. A qualifi ed dietitian (preferably experienced in children’s Crohn’s disease) will be able to assess the type of Crohn’s disease (stricturing Crohn’s disease requires a specifi c diet) and compare his current nutritional intake with what a boy his age requires. They will then recommend foods your son should include and foods to avoid or take care with. They also recommend nutritional supplements that he may require in between meals to boost his calorie intake.

There is no specifi c diet that is good for every child or adult with Crohn’s. There are many diets being advertised that make all sort of promises, but as of yet, none of these have been proven in a clinical trail setting to be effective in the management of IBD.

As in the management of other chronic diseases, the best outcome is frequently dependent on a multidisciplinary approach, including dietitians. Active disease can cause weight loss in both adults and children, due to a combination of active disease using up more calories and malabsorbtion of essential nutrients.

Until you are able to see a dietitian, I recommend patients be led by their body and experiences. It is not unusual for children (and adults) who are underweight

to crave the unhealthy, fatty and sugary foods. Their body is asking for the fat and calories it needs! People who have infl amed, ulcerated or stricturing gut often are horrifi ed by the concept of eating healthy foods such as fruit and veg or a brown granary roll. These foods can be like rubbing sandpaper over a raw, bleeding sore!

It is sometimes helpful to keep a food diary to identify which foods are well tolerated and which foods may aggravate his gut, be it pain, diarrhoea or bloating.

Happily, many studies have shown that children whose growth is affected by Crohn’s disease catch up with their peers in due time.

Q: MY daughter has ulcerative colitis. She has recently been unwell and has become very withdrawn and won’t talk to us. Her doctor put her on another course of steroids and I am worried she is not taking her tablets. Her doctor has also told her (and us) that if she does not get better this time, she will need surgery. We are at a loss what to do.

A: IT is important to remember that steroids are an artifi cial hormone and as such, your daughter is not having only to deal with her own hormones at this challenging time of her life, but also deal with this extra dose of mood swings, fl ushes, skin problems, fl uid retention etc we are throwing at her. The steroids are essential in getting her disease into remission. It is therefore important to educate her as to the benefi ts of taking her medication and allowing her to feel some control where possible, in making these decisions in her management.

The importance of body image in patients with IBD is frequently underrated. Steroids often have a negative impact on how patients perceive themselves. Particular

Q&A


Ask Our EXPERTSBelinda Headon is an IBD clinical nurse specialist. With many years of experience in managing, educating and supporting patients with IBD, she addresses medical questions asked by people phoning the CCA Helpline. The following is an example of a question often asked by people using the helpline.

concerns include weight gain and the “moon face” some patients suffer when taking them for long periods. Steroids may give a patient an increased appetite and it is the increased eating that causes the increase in weight. Some patients also retain extra fl uids when taking steroids, commonly seen in the face and around the ankles. If someone is concerned about putting on weight, it is important that they be aware of these issues and they therefore eat sensibly if they are having additional food cravings. Any fl uid retention will disappear as the steroids are reduced.

If you have a good rapport with your daughter’s gastroenterologist, discuss the issue with them as he or she will probably have a variety of resources to tap into to provide you and her with the support you need. This might include recommending a counsellor who is experienced in IBD with children. Many larger centres now have an IBD nurse specialist whose role is to offer and/or organise such support. They are a skilled and trusted resource who may be more easily contactable and able to offer your daughter and family more time than the doctor can spare.

Many children get great support from meeting other children of their own age who are either in a similar boat or have been at some stage. CCA runs very successful kid’s camps. With the support of other health professionals, CCA organises kids of all ages to get together for a weekend. The focus of the weekend is fun rather than their disease, but there is also a focus on education and support. Feedback from attendees (and parents) is always extremely positive.

Finally, it is considered good practice for any patient who has moderate to severe ulcerative colitis to have an understanding of what surgery involves if medicines fail. Sometimes the fear of surgery can cause more problems than the disease itself. For this reason we often try to educate patients about what is involved and what the benefi ts of surgery are so that should the day ever come, it is not a total shock, and they can plan the timing of the operation and choose the surgeon.

DR Eastaff-Leung was awarded a PhD in 2009 for her research into the immune balance in IBD, which was recently published in the Journal of Clinical Immunology.

Her research shows that an imbalance exists within the immune system of an infl ammatory bowel disease (IBD) patient compared with healthy individuals.

Dr Eastaff-Leung said: “The immune system of the digestive tract is quite complex and unique as it must not only provide a protective barrier from harmful infections, but it must also simultaneously allow for the absorption of necessary nutrients in our food. A healthy immune system must therefore have a balance between both protection from infection and tolerance to harmless gut bacteria and foods.”

The study involved IBD patients from the gastroenterology department of the Queen Elizabeth Hospital in South Australia. Blood samples were collected from 63 IBD patients in disease remission and from 28 control patients who were healthy or with non-infl ammatory conditions. Intestinal biopsy samples were collected from additional 25 IBD patients and 18 control patients undergoing routine cancer screening. The numbers of the “attack” and “regulatory” cells were then compared with each patient.

Dr Eastaff-Leung demonstrated that IBD patients had fewer cells that regulated the immune system and more “attack” cells that were capable of infl ammation.

This suggests that individuals with IBD may have an over-active immune system, which becomes less tolerant to harmless agents such as food or the good bacteria that live in the digestive tract.

The fi nding of this study may provide a simple diagnostic tool in the future to identify those at risk, and this blood test may also be able to determine the effectiveness of treatments.

Dr Eastaff-Leung is now working with Associate Professor Simon Barry, at the Women’s and Child health Research Institute, looking into developing new biomarkers by which to measure these cells more effectively, and ultimately determining which treatments restore the healthy balance in the immune system and why this imbalance occurred in the fi rst place.

CCA INVESTIGATOR’S

RESEARCH BREAKTHROUGHNew research by CCA’s 2006 Young Investigator Nicola Eastaff-Leung could help explain why some people are more prone to Crohn’s disease or ulcerative colitis.

Research


This Inside Insight edition focuses on what it is like to juggle the demands of childhood and adolescence with IBD. Here, and over the page, we hear from some of our younger members, and gain an insight into the IBD journey from a carer’s perspective.

STEVEN STRONG“ALL plans are soft until half an hour beforehand”, has been the motto of this family since fi ve years ago when I was diagnosed with Crohn’s (aged six years). My mum has learnt to catch vomit on the run and can produce a container from nowhere. Like all people with Crohn’s, the road has been a long journey with some dark moments and some we can now look back and laugh about.

My Crohn’s has not only affected my bowels but has also affected my lower joints. When I was fi rst diagnosed with Crohn’s I was malnutritioned and had very weak leg muscles. I had to rebuild my leg muscles and needed a walking frame to get around. This was defi nitely something new to be seen at my school as I also had a nasal tube in to fatten me up.

My friends at school were all wonderful and would help me carry my bag. All the teachers I have had at my school have all been extremely nice and have never once made me feel like a burden. The kids would stop me to ask if I had a breathing tube in my nose and I would jokingly say, “This is what happens when you don’t eat your tea”.

One day, playing handball, as I served my tube got caught and it came. Me, as well as everyone else, was stunned and couldn’t believe their eyes as the gunk on the end of my tube was dripping everywhere. I slowly walked up to the offi ce with my friends beside me. I mean, what can you say? But it’s always a quick call to mum who would put it back in.

Over the last fi ve years we have tried many drugs – steroids and immuran. Not eating and only being tube fed (yuck). Even after only being able to eat hard boiled lollies and Lemonade I still am not sick of them. The doctors were looking to put in a peg but my gut was too infl amed so the discussion turned to our last

GROWING PAINS

option, infl iximab. I don’t like to dwell on some of the side effects that could happen. I just know that it has given me back my life.

Last year I played competitive Aussie Rules football and also at district level. Our family went to Canberra for a skiing holiday the day after my injection of infl iximab so that I could happily participate with my family, skiing up and down the slopes. This was much needed “happy family” time for all of us since it has been our only main holiday since I was diagnosed with Crohn’s. I did know that if I wasn’t well enough that the holiday would be cancelled, even though mum said it didn’t matter and that we would just go another time. I try to enjoy each day as I don’t know how what I will feel like tomorrow.

My high point of this year is that i have been chosen to represent my school as School Captain. My school has given me so much and it is my chance to give some thing back. I am very proud of this achievement and it encourages me that even with this wretched disease, I can still achieve life’s successes.

My Story


NED CRERARHI, I’m Ned Crerar. I’m 11 years old and I’ve had Crohns for seven years.

When I was fi rst diagnosed with Crohn’s, my main symptoms were stomach aches and sores in my mouth, but over the next few years I developed perianal Crohn’s disease. This meant I had diffi culty doing a lot of things at school, like running and sport.

I have had several operations over the years, as well as infl iximab, imuran and steroids, but as I got older I got used to it. It’s a lot better now because I am capable of doing so much. For example, I made the athletics team, I play rugby and basketball.

All the operations I had were mostly painful but I got used to them. I always made new friends every time I went to the ward. I made friends that also had Crohn’s. All my doctors are really nice. I’ve got to know them now because I go in so much. Having Crohn’s isn’t bad because you always just think on the bright side that once they do all the operations you know it will get a lot better each time.

GEORGIA RICHARDSONHI, my name is Georgia Louise Richardson. I am 11 years old. When I was nine, I all of a sudden got this thing called ulcerative colitis.

I have been on several medications and every two weeks I have to get a blood test. I am not happy with what I have got. It gives me lots of tummy pains. Also, foods I used to eat, like pizza, chips and lasagna, I can’t have anymore, and when my friends have them I sometimes feel left out. My favorite food at the moment is tuna, lettuce, cheese and salad dressing.

When I fi rst got ulcerative colitis I felt dizzy and sick. I also felt painful inside.

Also with ulcerative colitis, sometimes when you go to the toilet blood comes out. I don’t like this feeling and most people with it would not like it either.

I still play a lot of sport and I fi nd going and playing basketball and netball with my friends is great. I also like knee boarding and wakeboarding behind dad’s boat. Mum and I have decided to just do what we can and to keep planning, otherwise we may not go places.

My brothers, Josh and Matthew, look after me when mum and dad work and are good at making me laugh.

We also fi ght just like a normal family. I really like that my friends care and help me, especially if I miss school. I have lots of family and cousins and they also help me when I need it.

Ulcerative colitis is not contagious, you get it randomly.

I think that ulcerative colitis is not something you want. There are lots of people who are sicker than me and mum says we must work to help them also. We want to understand how the illness works and raise money to help research.

The End.

It does have an impact on my schooling. Last year I missed 40 days of school, but I caught up on the work.

My sisters had weird reactions to me being in hospital. One of them pretending nothing was wrong and the other one kept crying. But now they are back to normal and very understanding and supportive. Even my dad says he was in denial at fi rst. He thought I would just grow out of it because no one really knew much about Crohn’s disease then.

My Story


When a person is diagnosed with Crohn’s or colitis, the impact is felt by many. Here, mother-and-daughter team Julie and Michaela Gunn share their perspectives on how it feels to live with IBD.

JULIE’S STORYMICHAELA is the youngest of my four children. She has three older brothers, with an age gap of 12 years between her and her youngest brother. She was an IVF baby and she was doted on from the moment she was born. We lived a normal life; both her father and I worked, the kids played sports and we spent the weekends ferrying the boys to water polo and swimming.

Medically, Michaela’s childhood was uneventful. She got the usual earaches and tonsillitis, cuts, bruises and of course the mandatory stitches when she fell and split her head open. But nothing that would prepare us for what was about to happen.

Michaela started high school in 2006 and she loved it. Michaela made many friends during the fi rst term, so when it came to her 12th birthday she had a long list of friends that she wanted to invite to a sleepover party. With great excitement the girls settled into their sleeping bags on the lounge room fl oor with lollies, popcorn, soft drink and great movies. Michaela came into my bedroom during the night to tell me that she was feeling unwell. She had a pain in the stomach and had been to the toilet a couple of times with diarrhoea. My response was: “Of course, what do you expect? You have eaten so much rubbish.” So I gave her some Panadol and told her to go back to sleep.

Well, of course what happened at her birthday party was the beginning of our journey into infl ammatory bowel disease. I had honestly not ever heard of Crohn’s disease or ulcerative colitis. There was no family history of the disease and I certainly didn’t know anyone that had the disease. In fact, when they said Michaela had a chronic illness, I honestly thought that it would be different in our case – Michaela would take the meds, respond very well and go into lifelong remission. I thought that we would see her gastroenterologist once a year and that would be that!

Michaela’s disease has been very perplexing from the time she was diagnosed. She never really followed the text-books case, and hence we have had many bumps in the road. There have been so many things that have

gone wrong and with each of those hospital admissions I have always tried to fi nd a positive (and I know a positive!). We have had to make some heart wrenching decisions about medication. Just reading the side effects makes me feel ill, but then I agree with Michaela’s doctors to give it a go – just in case this one works.

I don’t know how many tears I have shed or how many times I have wished to take all the pain away and for me to be sick instead of her. Feeling helpless is the worst feeling of all. I am her mum and I should be able to help her, but I can’t. I have never had a full night’s sleep as I always have one ear tuned to upstairs, listening for any movement she makes. Many nights I have been woken by her, crying and in pain, pleading with me to take her to hospital.

In thinking about writing this article, I have shed many more tears, refl ecting on what was, has been and could have been. But, many positives have also come out of Michaela’s illness. We have met some amazing people on our journey, including Michaela’s doctors, the nurses that have looked after her in theatre, recovery and on the ward, parents of children and teenagers that have IBD, adults that have IBD and of course our many friends at Crohn’s & Colitis Australia.

Michaela’s journey has been one huge rollercoaster ride, but a journey she will always take with me by her side.


My Story

THE TWO OF US

MICHAELA’S STORYI AM a 15-year-old girl about to turn 16 and I have a chronic illness. But, like any other teenage girl, I am obsessed with the Jonas Brothers and I am a major Twilight fan.

My journey started in 2006. It was meant to be one of the best years of my high school life. I started year 7 and made many friends. The fi rst term was great but then at the beginning of Term 2, I started to become ill. I couldn’t go to school as I had severe diarrhoea and abdominal pain. I went to the local GP nearly every second day (I swear they must be totally sick of our family by now!). But during the consultations I was asking questions about why I was losing so much weight? Why can’t I get off the toilet? But all they could tell me was that I had gastro and that it would pass in about a week. Well, weeks went past and I didn’t get any better. Eventually, after many hospital admissions and all that lovely poking and prodding by doctors, I was fi nally diagnosed on May 18, 2006, with indeterminate colitis – I had ulcerative colitis with features of Crohn’s disease. What? Where did that come from?

By this time I weighed about 48kg, but after many admissions for IV treatment of steroids – yep, the dreaded roids - I have now gained all my lost weight and more! I have had mood swings and I could honestly eat 24/7 if I was given the chance!

I have had a few other things go wrong with me that have all been associated with my IBD. I have liver disease and a distressing skin disease that has baffl ed quite a few people.

I have missed out on a lot of school and that distresses me as I really like school. I have great friends and a great social life at school. When I am at home I feel really lonely, but I am just too sick to go to school. Imagine running to the toilet constantly and then when you get into the toilet, the sounds that come out of the toilet! And I go to an all girl’s school! When I go back to school after being away sick, I get lots of questions. Why

are you always sick? How come your face is so round? What’s wrong with you? And honestly, do you think that I am going to tell them that I have a bowel disease? No WAY! Being a teenager and having a bowel disease don’t really go hand in hand do they?

I have had many treatments for my IBD such as imuran, infl iximab (I was really worried that I was going to grow whiskers and a tail) and Humira. None of them worked. So after scope after scope, poke after poke, we fi nally made the decision to have a laprascopic total colectomy in September 2009. I now have a temporary ileostomy, which means I have a bag and I love it. I can fi nally sit down without my bum hurting! I have named my ileostomy Poppy, as it pops off every once in a while, but only in quiet places!

I feel that I am now doing great and I love life. I have also met some amazing people on my journey and I have made some great life long friends that I would never have met if I hadn’t got sick. My journey has been an amazing one, but also one that I would not wish upon anyone.

“I feel that I am now doing great and I love life. I have also met some amazing people on my journey and I have made some great life long friends that I would never have met if I hadn’t got sick.”


My Story

ART FROM THE HEARTORGANISERS of the Art from the Heart exhibition are pleased with the number of CCA members who have elected to capture their journey with IBD on canvas.

Members were invited to express their feelings as part of a fundraising art exhibition to be held in Melbourne later this month.

Professional artists have agreed to donate works for sale on the opening night, including Beth Croce and Kevin Foley.

All the works will be showcased at Cambridge Studio Gallery, 52 Cambridge St, Collingwood, from Friday, March 26 to Sunday, March 28.

Art from the Heart will be launched at a cocktail party on the Friday evening. The party is from 6.30pm and tickets are $50 and include, drinks, nibbles and entertainment. Entry to the exhibition on the Saturday and Sunday (11am-5pm)is $5. All funds raised by the event will go to research and CCA’s youth camp program.

To purchase tickets go to www.crohnsandcolitis.com.au, or phone or email the CCA offi ce.

Members unable to attend the exhibition can still purchase tickets for the exhibition raffl e via the website or through the CCA offi ce. Among the many prizes on offer are a $500 RedBalloon voucher and a Nicola Cerini handbag.

FUNDRAISING GOES TO NEW HEIGHTSCCA member Samanthi Selva is never one to shy away from adventure, be it travelling through India for a year in her teens or hiking in Costa Rica. But the 33-year-old says her next project is her biggest challenge yet. Samanthi, who was

diagnosed with Crohn’s 20 years ago, plans to complete an 18-day trek to the base of Mt Everest in April.

Samanthi decided to undertake the trek at the suggestion of husband Richard, a keen adventure traveller. She researched the possibilities, but was unable to fi nd anyone else with Crohn’s who had undertaken the strenuous climb to 5200m.

“I thought, I can’t not do it, and it’s a good way to raise awareness - just making people aware you don’t need to sit around home. You can live a normal life,” Samanthi said.

Samanthi has enjoyed reasonably good health since her last surgery, 14 years ago. However, a fl are-up that put her in hospital for two days last year highlighted the potential problems of travelling in such a remote location.

“I have done day walks in Costa Rica, but there were always toilets and accommodation.”

She will attempt the trek with about eight friends and family members, and has been running and swimming to build fi tness and combat altitude sickness.

Samanthi is encouraging family, friends and her colleagues at the Australian Stock Exchange in

Sydney to sponsor her for the walk. CCA members can also support the fundraising initiative by going to http://www.mycause.com.au/mycause/raise_money/fundraise.php?id=4164. All money raised will be donated to CCA.

CELTIC CONCERT WHEN Gladys McKenzie decides to make a bit of noise about IBD, she does so in full voice.

For the second year running, Gladys and her husband Tom organised a Celtic fundraising concert on behalf of CCA.

Gladys said she learnt a lot from organising the fi rst concert in 2008, held at a community hall in Huskisson, NSW, which raised $1000.

“This time I thought we would go a bit bigger so we hired the new entertainment centre in Nowra. Then I worried about how I would fi ll it,” she said.

Gladys, whose granddaughter Karly has Crohn’s disease, wrote to local organisations and clubs, including Rotary and Lions clubs, inviting them to buy tickets to the concert.

“Once we got over 200 people I started to relax,” she said.

In the end more than 700 people attended the concert, featuring Irish and Scottish dancers, singers and musicians, including Gladys’s husband and son, who played the bagpipes. A doctor also spoke about IBD to raise awareness of the disease.

The event raised $9600 and Gladys is already thinking of ways to make the event bigger and better next time.

FUNDRAISING TOOLSAS you know, CCA does not receive any government funding and relies entirely on support from members and the general community. Here are some ways you can help CCA continue its work and raise awareness of IBD.

FUNDRAISING

Fundraising


DONATIONSRESEARCH DONATIONS Major donors$25,000 T & M Yenken$500-999 M Ensabella $200-499 N Edd, A Junor

GENERAL DONATIONSMajor donors$25,000 T & M Yenken$1000-$2999 I Galloway, The Jackson Foundation, M Ismay, A Saraceni. $500-$999 M McPherson, R Haneman, S Gluskie, A Burt, J Foster, A Lord, R Donkersley, N Barrow, M Ensabella. $200-499 M Harding, B Boyd, D Papas, N Telford, R Singleton, H Baranoff, L Kilmister, H Bombardiere, S Uhlenbruch, L Archer, P Goldsmith, G Cunningham, M Hockless, K Pilcher.

COMMUNITY FUNDRAISINGRotary Club of Liverpool Greenway $5032K Ryan & N Mead, fundraising party $1075Lilydale High School $395Rotary Club of Corryong $250Lions Club of Queenscliff/Pt Londsdale $400 City of Melbourne $530Bentleigh RSl Women’s Auxilliary $300Normanby Park Golf Club $200Rotary Club of Northbridge Western Australia $716 Leonie Eckle, kebab day $315

IN CELEBRATIONAnne Parish $2000

IN MEMORIUMMarj PyattMarianna SchievinkOscar J. ThomasOur condolences go to their families.

Community Fundraising Events: Organising your own fundraising event is a very rewarding way of raising money and awareness of IBD. Enthusiasm and organisation are key to a successful event so contact [email protected] for a comprehensive fundraising kit to help you on your way.

Changing Lives Challenge: Raise money and awareness and get fi t doing it! Take part in one of the challenge events taking part in your capital city: Run Melbourne – July 18City to Surf, Sydney – August 8Bridge to Brisbane – August 29Tasmania Point to Pinnacle – Date TBCAdelaide’s City-Bay Fun Run – September 19City to Surf, Perth – August 29

CCA will be posting updates with these events closer to the dates so be sure to check out the Changing Lives Challenge page on our website.

Donation boxes: CCA donation boxes are a simple yet effective way to raise money. They are perfect for your offi ce desk or counter at work, or to have at a fundraising event. Contact [email protected] to order yours.

Workplace Giving: Does your workplace take part in workplace giving? If so, is CCA a nominated charity? Asking your employer to match your monthly donations is a great way to double your contributions to CCA.

In Celebration: Are you planning to celebrate a birthday, anniversary, bar mitzvah, Christening, house warming or Christmas? You can make it more special by asking your friends and family to help celebrate the occasion with a donation to CCA. CCA can provide you with a donation envelope to accompany your invitations so guests can send their donations directly to CCA and we will then issue receipts where requested. You will receive a special thank you letter with the overall amount you have raised. Make sure you remember to tell your guests that all donations over $2 are tax deductable.

Bequests: When writing your will, consider leaving a bequest to help CCA continue its programs and fund research. If you would like further information - in the strictest confi dence - about making or updating your will, please contact CCA.

Merchandise: CCA is in the process of developing a band new line of merchandise. These items will be available to purchase individually via the online shop or in a pack for you to sell at your next fundraising event. Please see the merchandise page on the website for more details or contact [email protected] to order your merchandise now. All merchandise will be available by April 15.

Support Group Events: Crohn’s and Colitis National Awareness Week and World IBD Day are just a few short months away (see page 4). Events are being held across the country to raise awareness of IBD and funds for CCA to continue its work. Check the website to fi nd the nearest event to you and go along to show your support. If there is no event in your local community, why not hold your own event? Please contact us for more information.

Fundraising


EFFECT ON THE CHILDDepending on the illness, the child may experience symptoms of discomfort and pain. Sometimes the treatment for the condition can also be uncomfortable, frightening, and painful. For the child’s family, and in particular the parents, it can be very distressing to see your child sick and in pain. In addition to the emotional strain, it will also demand a lot of time, energy, and resources, both personal and often fi nancial as well.

The effect that chronic illness will have on your child will depend on a number of things, including the type of illness, what support you have, your child’s age, their level of maturity and their individual temperament. How you as a family cope with the situation, as well as your attitude toward the illness, can also make a big difference in helping your child to manage the emotional impact.

Hospital stays and medical appointmentsHospitals can be a frightening and lonely experience for a child. How a child copes with these separations will depend a lot on their age. Younger children who don’t understand the concept of time can fi nd it distressing to be separated from parents. Studies have shown that this stress can even effect recovery times.

Most hospitals understand the stress that separations place on children, particularly for children under the age of fi ve, and make provisions for a parent to stay with their child.

Your child may also need to attend a lot of medical appointments or spend a lot of time in bed resting. This can result in missing school, which affects opportunities for learning, playing and making friends with other children.

Your child may also be less able to participate in activities that are enjoyed by most other children, e.g. playing sports and attending excursions and parties. This may lead them to feel different from other children, which may cause them to feel frustrated and angry.

How other children reactDepending on how noticeable the illness is, your child may need to cope with reactions from other children e.g. being teased at school. He or she may feel rejected if they are

the last to be chosen in team games. On the other hand, if the illness is not so “noticeable”, he or she may fi nd it diffi cult if they can’t do things that the other children think they should be able to do.

WHAT PARENTS CAN DOTalk openly and honestly with your childIt is important to talk openly and honestly with your child about their illness in a way they can understand. This helps build trust in you. Talk with them about treatment before it happens to help them prepare. Be honest about any possible pain or discomfort he or she may experieance, but reassure them by explaining that it won’t last long and you will be there to support them during the treatment. If children are not prepared they can sometimes expect the worst and worry a great deal.

Medical staff can also help with talking with your child about their illness and treatment. Give plenty of time to listen to your child’s questions and concerns, even if they ask the same thing over and over.

Talk openly about the illness with other people in your child’s lifeTalk with teachers and other school staff, the parents of your child’s friends, and anyone else who may have responsibility for the care of your child.

Sometimes others may be unsure about including your child in an activity such as a birthday party or sleepover because they don’t know enough about the illness. Simply talking with them about it and organising a plan about what to do in the event of an emergency is usually enough to ease any fears or concerns.

Encourage other children to know more about the condition also by talking openly about it and answering any questions they may have.

By helping others to understand, you can help to make sure that people don’t have unnecessary fears or misunderstandings about your child’s illness that could have a negative impact on your child.

A CHRONIC childhood illness can be defi ned as a medical condition that is long term or permanent, and is rarely able to be completely cured. Chronic illness usually requires regular medical treatment, and sometimes long hospital stays. Once the illness is routinely managed, most children can function well and live relatively normal lives.

CHRONIC CHILDHOOD ILLNESSMANAGING THE EMOTIONAL IMPACT


Encourage your child to continue everyday activitiesIt is really important to try and make as much as possible in your child’s life as normal as you can. This can take some time, and is not always easy, but eventually your family can again fi nd a new kind of normal.

Ways you can do this include keeping in touch with family and friends, and letting your child take part in the same activities as her friends (with advice from your doctor). It can be easy to let worries make you overprotect your child. This may result in the child missing out on activities that are essential for their healthy development, such as playing games with other children.

Like all children, your child needs opportunities to learn through trying all the things that are a part of everyday family life, including:

• Limits and consequences for unacceptable behaviour

• Helping around the house

• Playing with friends

• School and learning

• Fun times with family, friends, and pets.

All this is essential for helping your child to develop social and other skills, as well as increase their self-esteem and confi dence.

Allow your child to have a say in their treatment Children who have ongoing health problems often have lots of things they can’t do, and lots of things done to them, without their choice or control, so they need to have support to do the things they can. Give your child some choices around how much they would like to be involved in their treatment. This will help your child to develop independence and personal responsibility. Their input will likely change over time and even on a day-to-day basis depending on how your child is feeling.

Recognise and respond to the emotional impactAs well as the physical impact of the illness, you need to think about the emotional impact it can have on your child. Your child may be clingy and reluctant to separate from you if they are feeling worried or stressed. As a child approaches adolescence, they may become more self-conscious about how the illness is seen by others, particularly friends. You can help by encouraging them to talk about how they are feeling, and by reassuring him or her that their feelings are completely normal. Try to listen and not give too much advice. Children can also express their feelings in other ways, such as through drawing, painting, playing music or keeping a journal. Reassure your child that you will always be there for them.

If your child’s feelings are preventing them enjoying life, you can seek professional help. A social worker or psychologist is often available through your local hospital or community health centre.

Signs that additional help may be needed include:

• Problems at school or with friends

• Not wanting to do things

• Seeming depressed

• Big changes in behaviour.

Talk openly with siblings about the illnessMake sure that you talk openly with your other children about their brother or sister’s illness. Help them to understand what is going on so that they feel included and can help if they want to, while at the same time not taking the responsibility for caring for their sibling. Try to include siblings in hospital visits whenever possible.

Allow opportunities for your other children to talk about how the illness is affecting them. Sometimes children think that it is somehow their fault that their brother or sister is sick. It is really important to allow children to talk about their fears and concerns and reassure them that it is not their fault in any way.

IDEAS FOR SUPPORTING THE FAMILYGet enough rest, healthy food, and exercise. Find people that you can talk to about how you are feeling. Join a support group so you can meet and talk with other parents who care for a child with similar health needs.

• Ask for help and support from others. If someone offers their help and support, let them know what you would fi nd useful.

• Take regular time out to do something that makes you feel good. It is important for your child, as well as for you, that you get some breaks.

• Plan regular times for the whole family to take part in a fun activity that isn’t focused on the illness. The amount of time spent together and the type of activity is less important than the fact that it happens regularly and everyone spends time together and enjoys each others’ company.

• Regularly set aside time to spend with your partner so you can connect as a couple.

• Keep up regular family routines as this provides a sense of safety and predictability, and helps you to see life goes on in everyday ways.

• Find out about your child’s illness and treatment options from your doctor and associations established to support your child’s illness.

• Get support from health professionals if you are feeling overwhelmed. Talk to a hospital social worker or your local community health service. If you need practical support such as fi nancial support, transport assistance or respite care, ask your health professional for a referral to the appropriate service.

This is an edited version of an article that appears on the South Australian Government’s Parenting and Child Health website. Go to www.cyh.com and follow the links to read the full article.

Wellbeing


IT can be diffi cult to explain the impact of a chronic illness on an individual. There is the obvious physical suffering of being unwell. It can often take a long time to be diagnosed, adding confusion and stress to the ongoing state of being unwell. When a diagnosis is fi nally received it can be both a relief, and a cause for despair and confusion. Treatment can further confuse with trials of various medications, presenting more symptoms due to side effects, and surgery, etc. It can take a long time to adjust to being diagnosed with an illness that is often lifelong and incurable. The reality is that it alters a person’s identity in a way none of us plan for. It can also be a bewildering experience when trying to gain information about the illness, its causes and its treatments. It can be hard to describe the impact of chronic illness on a person’s relationships with their self, their body, friends and family, social life, and work life. Arts psychotherapy offers the opportunity to process some of these issues through less restrictive methods of communication than words alone.

Arts psychotherapy utilises creative forms of expression - painting, drawing, collage, sculpture, movement, sound, music, etc. - as well as providing the opportunity to talk about problems. The addition of creative expressions and refl ections supports the individual to enter into a dialogue with their conscious and unconscious self. There is no need to have any skill or talent in the arts when using them as a therapeutic tool. The arts psychotherapist provides a safe space in which to support and guide clients, in a non-judgemental way, to express creatively anything that arises in the session. Some of the issues a client presents will be able to be processed entirely unconsciously through creative expression, while other issues will present themselves as symbols, which the client will notice when refl ecting on the creative product they have made. The arts psychotherapist will then support the client to further process these arising issues through discussion or more creativity. Arts psychotherapy adds objective expression through an external medium; it helps to be able to “get it out” and then to be able to view it from a distance. The aim is to bring forth unconscious aspects of the self to nurture a more whole and integrated individual, including the integration of the chronic illness.

There can be a great deal of frustration and stress when living with a chronic illness, ironically at the same time there is a more extreme need for minimising stress levels. Stress can delay or prevent you stabilising the symptoms of your illness. This indicates the need for processing and releasing frustration, stress, and distress, which is vital to maintaining a functional life, and key to regaining and maintaining good health. Arts psychotherapy can help manage stress levels because being creative enables us to “do something” with the challenges and frustrations of living with a chronic illness.

Having a chronic illness does not remove the everyday responsibilities of sufferers, tough it can certainly seem to restrict or limit ones ability to manage these. This means that people living with chronic illness often have to think outside the box when it comes to managing their everyday responsibilities and commitments. Arts psychotherapy can also provide unique support in this area through the practice of creativity. Creative practice can help to develop creativity of thought, which allows us to explore options when problem solving, empowering us to fi nd our own solutions to life’s struggles.

As an arts psychotherapist, I work to provide a safe, comfortable and creative environment, with as broad a range of art-making materials as possible for my clients. It is not necessary for you to have creative skill or talent in the arts. The creative modalities are used as a form of expression and communication, in addition to verbal discussion. Anything created within therapy is confi dential. Clients are encouraged to take their presenting issues and creatively express themselves. There is no right or wrong way to be creative in this context. Whatever is inspired, no matter how grand or simple, is deemed appropriate and useful. We believe that creative activity and expression offers unique opportunities to process at an unconscious level. The client may then discuss any feelings or reactions that may arise during their creative expression, and/or their responses, upon refl ection, to any images made. Undirected creative expression can offer a way for the

TALKING PICTURESArt psychotherapist Johanna Hood believes art can unblock and unlock the deepest feelings of people living with a chronic illness. Here she explains how tapping into your creative side can help people cope with their disease.

Wellbeing


unconscious mind to communicate with the conscious mind, through which we may fi nd many useful messages for our lives and discover lost parts of ourselves, which can become our allies in healing and life.

The image pictured is an example of art psychotherapy in practice. The image was created by a woman living with Crohn’s disease and serious food allergies.

She identifi ed some images within this piece:

• “Hard to swallow” article on weight gain due to drugs - an issue she has been struggling with after two years on prednisolone.

• “Yoga girl” - she misses her old energy, form and physique.

• “Bread and milk” - she is tired of having to pay so much attention to food.

• “Man with trumpet” - she misses her social life, which used to include a lot of live music, and she misses male company, having previously had many male friends who have disappeared during her illness.

The creator of this work was aware of the collage symbols as she created this piece. They are issues that are with her most days. She then fi lled the space with intuitive drawing in oil pastels. There was a great deal of satisfaction for her when she found the central article acknowledging that

many people are overweight due to medication. This work of art was a powerful piece, yet when she refl ected on the image afterwards she found herself drawn to the wooden pier in black, to the right of the article. This image offered her hope of a new destiny, she felt that she wanted to walk to the end of the pier where she would experience the beauty of the water and be met by a boat which would take her on a beautiful journey. She said she came away from this session feeling grateful for the article and its acknowledgement of her struggle to stay healthy without weight gain, but was relieved to also discover she still had hopes and dreams for the future.

Arts psychotherapy can support the integration of one’s new identity, help manage stress levels, encourage creative thought and creative problem solving, and enable the processing of issues that can be diffi cult to put into words.

People interested in trying art therapy can fi nd a professionally trained and registered practitioner near them by going to the website of the Australian and New Zealand Art Therapy Association, www.anzata.org.

Johanna Hood, AThR. MA Arts Therapy (Clinical), Cert. of Sandplay Therapy, ANZATA member.


SHOP AT RITCHIES AND RAISE MONEY FOR CCA

HOW IT WORKS

1. Obtain a Community Benefi t Card from Ritchies.

2. Nominate Crohn’s & Colitis Australia for a donation.VIC Community Benefi t Number is 92400NSW Community Benefi t Number is 93238Qld Community Benefi t Number is 97516

3. Ritchies will donate 1 per cent of individual sales to CCA.

For details or store locations go to www.ritchies.com.au


KEYDATESInformation Forums and SymposiumsVICTORIAA full-day state symposium will be held at Royal Melbourne Hospital on Saturday, April 10. CCA has received extremely positive feedback about the holistic symposium format, which incorporates topics relating to life issues, as well as clinical aspects of IBD.

The Royal Melbourne Hospital symposium will comprise half a day of educational presentations from health professionals, with the remaining half of the day focusing on more practical and personal issues arising from living with IBD.

To register your interest in attending please phone CCA or email fl [email protected]. You can also visit our website for more information, including the agenda.

Victoria will also host a paediatric forum in early 2010 at the Royal Children’s Hospital.

QUEENSLANDCCA plans to hold a full-day symposium in Brisbane in July. There will also be an information forum in the south east region mid year. More details will be announced next magazine, and on our website.

TASMANIAAn information forum will be held at Launceston General Hospital in early 2010. See website for details when fi nalised.

NSWAn information forum will be held in Canberra at The Canberra Hospital in April or May. Details will be posted on our website as soon as they are fi nalised.

CCA will also hold forums in south Sydney and Newcastle later in the year.

WEST AUSTRALIACCA will hold a full-day symposium later in the year. Details will be included in the next edition and on the website.

Pouch SupportCCA received many enquiries regarding the ileoanal pouch support group advertised in the last edition of Inside Insight. All contact details have been forwarded to the group facilitator.

Any members who have an ileoanal pouch* and are interested in making themselves available for phone and/or email support, please contact CCA on 1800 138 029.

*An ileoanal pouch (also known by various other names) involves removal of the colon and rectum and the fashioning of a reservoir or pouch using the end portion of the small intestine, which is then positioned in the pelvis and joined to the anus.

CCA was established in 1985 by people who have IBD or have a family member affected by the illness. It is a not-for-profi t organisation with an honorary board of Directors committed to fi nding a cure for IBD and providing and implementing services to assist members’ needs. CCA collaborates with the Gastroenterological Society of Australia, Digestive Diseases Foundation, IBD Australia Special Interest Group and other medical, surgical societies or accredited professional organisations to produce specifi c IBD publications. These publications are distributed nationally and internationally to patients and medical professionals, and to the Global Network of IBD Patient Organisations.

CCA NATIONAL MAGAZINE SPONSORSHIPWe also acknowledge and appreciate the support of Orphan towards sponsorship of the CCA magazine.

OFFICE ADDRESS:Level 1, 462 Burwood Rd Hawthorn, Vic 3122

TEL: 1800 138 029

61 3 9815 1266

FAX: 61 3 9815 1299

EMAIL: [email protected]

WEBSITE: www.crohnsandcolitis.com.au

QUEENSLAND OFFICE:

TEL: 1800 071 072

EMAIL: [email protected]

POSTAL ADDRESS (ALL CORRESPONDENCE):CCA PO Box 2160, Hawthorn VIC 3122

OFFICE HOURS:The phones are attended between 9.30 and 5.00 pm Monday to Friday (EST). If phoning outside these hours please leave a message on the answering machine and your call will be returned as soon as possible.

APPOINTMENTS: If you wish to attend the CCA offi ce please ensure that you have made an appointment in advance. This is to ensure that the person you want to speak with or the materials you have requested are available. To avoid inconvenience, an appointment can be made by contacting (03) 9815 1266.

THE GLOBAL NETWORK OF IBD ORGANISATIONS:

Crohn’s & Colitis Foundation of America (CCFA)www.ccfa.org

Crohn’s & Colitis Foundation of Canada (CCFC)www.ccfc.ca

European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA)www.efcca.org

National Association for Colitis & Crohn’s disease (NACC) UKwww.nacc.org.uk

DISCLAIMERCCA does not accept responsibility for the accuracy of statements, errors or omissions made by its’ contributors. The products,ideas, websites, books and clinical trials mentioned in the magazine are not a warranty, endorsement, approval of these products and ideas, or of their safety.

CCA disclaims responsibility for any injury to persons resulting from any of the ideas or products referred to within the magazine. Inside Insight cannot be reprinted, copied or distributed unless permission is obtained from CCA. No profi t can be made from the magazine. No information taken from the magazine can be placed on any website without prior permission from CCA.


GENERAL INFORMATION

OFFICE ADDRESS:Level 1, 462 Burwood Rd Hawthorn, Vic 3122

TEL 03 9815 1266 FAX 03 9815 1299EMAIL [email protected] www.crohnsandcolitis.com.au

MIND OVER MATTER CCA WINNER - Crohn’s & Colitis Australia€¦ · Be Active, Be Seen, Be Heard....

Documents

Transcript of MIND OVER MATTER CCA WINNER - Crohn’s & Colitis Australia€¦ · Be Active, Be Seen, Be Heard....