AUTUMN 2007 · ACCA National Magazine Sponsor 2007 ACCA acknowledges the generous contribution of Altana, a Nycomed company, towards the printing of the ACCA National

AUTUMN 2007

ACCA National Magazine Sponsor 2007

ACCA acknowledges the generous contribution of Altana, a Nycomed company, towards the printing of the ACCA National Magazine.

The ACCA National Magazine is published by the Australian Crohn’s and Colitis Association (ACCA), Copyright 2007.

Editor: Sally TobinSub Editor: Francesca ManglavitiContributors: Alex Herschell Belinda Headon Jane Daley Dr Anas Natfaji & Dr Rupert Leong Marnie Nitschke

Cover Design: Henry Birman Designs 125 Thomas Street East Brighton Vic 3187 www.hbdesigns.com.au Ph: (03) 9576 7888

Office Address: Level 1, 462 Burwood Rd Hawthorn, Vic 3122Tel: 61 +3 + 9815 1266Fax: 61 +3 + 9815 1299Email: [email protected]: www.acca.net.au

Postal Address: ACCA(all correspondence) PO Box 2160 Hawthorn VIC 3122

Office hours and enquiries:The phones are attended between 9.00 and 5.00 pm Monday to Friday. (EST) If calling 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 ACCA office 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.

Contents

Page 2 • ACCA Autumn 2007

Page 2 Magazine Sponsor Mission Statement

Page 3 A Word from the CEO ACCA News

Page 4 ACCA’s Infliximab Campaign

Page 6 ACCA News Australian Research Project - Seeking Volunteers

Page 7 Help put IBD on the Map Donations

Page 8 ACCA’s Vision 2007-2012

Page 9 A Summary of Reports

Page 10 Personal Time with Maria Pantelis

Page 12 Teens & Tweens

Page 14 Ask Our Experts

Page 15 Letters to the Editor

Page 16 Zaun Bhana tells of his experience with Infliximab & UC

Page 17 TGA Approves Infliximab for Treatment of Ulcerative Colitis

Page 18 Medical Feature

Page 20 ACCA Education & Support Line

Page 21 Nutrition News

Page 22 Complementary Therapies

Page 23 Tribute to Lee Min Yap

Page 24 Members’ Benefit Program

Page 24 Websites

Page 25 Researchers identify key Gene linked to IBD

Page 26 Shop at Richies Queensland Population Study Trial Summary

Page 27 General Information Global Network of IBD Organisations Mission Statement

ACCA’s mission is to support the Crohn’s and Colitis community with a focus on confidential support programs including education, advocacy, counselling, increasing awareness and generating and utilising funds for research and support.

Sitting at my desk, just two months into 2007, and it’s already shaping up to be an exciting year. Our support group program is underway, 16 IBD forums across the country have been scheduled, (two have already taken place, attracting over 200 people) we are planning Awareness Week 2007, engaging in profile raising activities via government and media agencies and funding new research programs.

Since the 2nd January, we have been completely focused on influencing the decision makers to include Infliximab on the list of PBS funded drugs. Having this drug publicly funded is the most important issue facing the IBD community at the moment. We have been actively raising the profile of IBD and more specifically Crohn’s disease amongst the public, politicians and media commentators to help put Infliximab on the public benefits scheme.

The response to our call for personal stories and to participate in our media taskforce has been overwhelming – testament to the genuine need to have this treatment made financially accessible. We have been able to use these stories to develop a patient impact statement which we have submitted to the Pharmaceutical Benefits Advisory Committee, federal and state politicians and media commentators in each state.

The progress is slow and frustrating but we are encouraged by the positive media coverage we have been able to generate. We are also encouraged by the active lobbying by people such as Craig Oosterhof who started the online petition www.infliximab.org and several other long term “Crohnies” who have been tirelessly banging on the doors of politicians and media commentators so that our need is fully understood.

While the PBS listing of Infliximab has taken up much of our time, we have also been busy finalising our strategy for the next 5 years and implementing our 2007 operations plan. Our goals and objectives over the next 5 years are now clearly documented. This follows an extensive and thorough development process, which took into account the achievements of the past and the changes needed to put ACCA on the national health map. You can find the vision, mission and goals detailed in this issue of the national magazine.

To help guide us into the future, we welcome the new Chairman of the ACCA Board Bruce Ricketts who took over the position in January. As mentioned in the annual report and AGM, Bruce is a highly experienced and qualified leader – well placed to guide us through our next phase. We are confident that under his leadership, ACCA will continue to grow in strength and deliver on its mission. Sadly we also say goodbye to Debbie Zauder who not only resigned from her position as Chair in December, but recently decided that due to family commitments, she would also resign from the Board.

As many of you would know, Debbie was one of the original people on the Board of ACCA and saw the organisation undergo several major developments. She was instrumental in creating the ACCA we have today. We wish her every happiness and success in the future and I’m pleased to report that we will continue, in a less formal way, to benefit from her experience.

Kind regards

Francesca

JOIN ACCA’S CAMPAIGN TO HAVE INFLIXIMAB ON PBSThis month the Pharmaceutical Benefits Advisory Committee (PBAC) is expected to make a recommendation regarding the listing of Infliximab on the PBS for Crohn’s disease. ACCA has campaigned strongly to have the drug made available – in a submission to the PBAC and through a national media campaign. An update on both appears in the following pages.

WHAT YOU CAN DO• Sign the petition at www.infliximab.org• Write to your local Member of Parliament (MP) and request a meeting.• Include a one page ‘story’ detailing your experience with Crohn’s disease, explain why you think Infliximab should be available on the PBS and include a photo.• Contact your local media outlet – write a letter to the editor, contact talkback radio and raise the issues.

ACCA IBD FORUMSACCA’s 2007 IBD Forums have taken place in Melbourne and Tasmania already with great attendance. Some further dates for your diary include;

• Bankstown NSW - Tuesday 13th March• Canberra - Thursday 15th March• Fremantle - Saturday 28th April• John Hunter Children’s Hospital - Monday 14th May

We are awaiting confirmation for a further series of IBD Forums. The location and dates will be published on the ACCA website and the National Magazine.

NATIONAL CROHN’S & COLITIS AWARENESS WEEK 18 - 22 JUNE 07This year we are planning a bigger and better National Crohn’s & Colitis Awareness week. We’re hoping to schedule a number of activities and fundraising opportunities in each state during the month of June. Please see our article following for ideas about how you can support ACCA in your community.

ACCA OFFICE CLOSED OVER EASTER HOLIDAY BREAKThe ACCA office will be closed during the Easter holiday period from Good Friday 6th April to Tuesday 7th April 2007. ACCA wishes all a happy and healthy Easter.

ACCA NewsA Word from the CEO

ACCA Autumn 2007 • Page 3


ACCA’s Infliximab Campaign

Minister to discuss the disease and the need for Infliximab to be available on the PBS.

The nation’s biggest selling daily newspaper, the Herald Sun, and The Age have both carried powerful news and feature stories on the issue and highlighted Crohn’s patients, including Craig and Nicole O’Malley.

The Sunday Herald Sun’s columnist Robyn Riley raised the issue in her column and conducted an online discussion on her blog on the paper’s website, attracting many comments. The paper has a readership of 1.5 million people.

The public and media have embraced the Australian Crohn’s and Colitis Association’s campaign to have Infliximab listed on the Pharmaceutical Benefits Scheme (PBS).

In February, ACCA launched a publicity campaign to raise awareness of the need to have Infliximab listed on the PBS, to give all Australians living with moderate to severe Crohn’s disease access to this life-changing drug.

ACCA Chief Executive Officer Francesca Manglaviti said: “Thousands of Australians living with Crohn’s disease are suffering needlessly because they are unable to access Infliximab. These people deserve a better deal.”

“Many Crohn’s patients have experienced limited Infliximab infusions and enjoyed life-changing results. There is no doubt that in suitable patients, Infliximab can bring immediate improvements to quality of life,” Ms Manglaviti said.

The Pharmaceutical Benefits Advisory Committee (PBAC) is expected to make a recommendation in March as to whether Infliximab will be listed on the PBS. ACCA made a submission to the PBAC on behalf of patients, and the Gastroenterological Society of Australia (GESA) made a submission on behalf of clinicians.

Since the campaign started in February, hundreds of extra people have signed Melbourne man and Crohn’s patient Craig Oosterhof’s online petition at www.infliximab.org to have the drug listed on the PBS. The campaign has also triggered a record number of visits to the website.

The publicity campaign has raised awareness of Crohn’s disease in Australia, with many media organisations expressing interest and strong support to help. The campaign has gained considerable media coverage in newspapers, on radio, TV, and online. Craig’s Infliximab petition – both online and faxed letters, now boasts more than 5000 names and continues to grow. The petition will be delivered to Federal Health Minister Tony Abbott. ACCA with Craig are seeking a meeting with the

Craig Oosterhof

Campaign gets media support as thousands sign online petition www.infliximab.org


“The Australian Crohn’s and Colitis Association has been fighting the good fight, virtually on its own, but in a six-year campaign to have the drug Infliximab listed on the Pharmaceutical Benefits Scheme, it has met with no success. So now a more public campaign is the only chance,” said Robyn Riley in her column.

774 ABC radio Melbourne’s Jon Faine has been particularly interested in the issue, and gave airtime to discuss the disease and the plight of Craig – and even interviewed Craig during a recent visit to hospital to give a first-hand account of the trauma that is associated with Crohn’s disease. Leading TV news station Channel 7 also ran a story on the 6pm news service.

In Sydney, Matt Tulk spoke on 2UE-talkback radio and articulated the suffering that is experienced by Crohn’s patients. In Wollongong, Sharron Marks was front-page news with her story appearing in the Illawarra Mercury. She told how her Crohn’s disease led to her wedding being postponed.

Craig said: “The media publicity campaign has boosted visits to the website www.infliximab.org immensely, which hopefully has helped people understand what this medication means for people living with Crohn’s.

“I was amazed by the reaction from the public and also the comments, so many families and people are affected by this

disease and so many people are desperate to receive this medication.

“I’d like to thank everyone that has signed our petition and ACCA for organising the campaign to raise awareness in the community about the plight of people living with Crohn’s and that there is a drug that can help. We must get Infliximab listed on the PBS so we can bring relief to thousands of people living with Crohn’s disease.”

“Their symptoms are debilitating, so imagine their frustration to know a drug is available to help, but its cost is too prohibitive for most. That is unacceptable. Actually, it is un-Australian. That’s not how we do things.” - Robyn Riley, Sunday Herald Sun.

ACCA is busy organising meetings with politicians at state and federal level to raise awareness of Crohn’s disease and the importance of having Infliximab listed on the PBS.

“The cost of this disease for sufferers, their carers and the broader community cannot be over stated. Listing Infliximab on the PBS will bring relief to many people living in agony and bring multiple economic benefits to our community,” Ms Manglaviti said.

Even if the PBAC makes a positive recommendation to the Federal Government, the listing of Infliximab will still require cabinet approval, which may take some months.

WHAT YOU CAN DO

• Sign the petition at www.infliximab.org• Write to your local Member of Parliament (MP) and request a meeting. Send a one page ‘story’ detailing your experience with Crohn’s disease, explain why you think Infliximab should be available on the PBS and include a photo.• Contact your local media outlet – write a letter to the editor, contact talkback radio and raise the issues.

“Their symptoms are debilitating, so imagine their frustration to know a

drug is available to help, but its cost is too prohibitive for most.

That is unacceptable.”-Robyn Riley, Sunday Herald Sun

ACCA SUPPORT GROUPSFive people have been selected to be leaders of ACCA’s volunteer support group network.

The purpose of the Crohn’s and Colitis Support Groups is for people to come together and discuss their experiences, support each other and share resources in a mutually supportive environment.

The support groups will be convened by trained volunteer facilitators and resourced by ACCA. The volunteer group leaders will receive training in March to understand group dynamics and develop the skills to manage situations that can sometimes be quite emotional.

The support groups will be piloted in Victoria, followed by NSW and the remaining states hopefully by mid 2007. ACCA will provide further information as soon as possible.

CALLING ALL VOLUNTEERS - ACCA NEEDS YOU! Volunteers are critical to helping us deliver our mission to our members and the IBD community. Our new National Office is located at Level 1, 462 Burwood Road, Hawthorn, Victoria.

If you have a car, or can travel by train to our new office and can spare an hour or more to assist with specific office tasks such as mail-outs, data entry, preparing joining kits etc, we need your help! Please contact the ACCA office on [email protected] or call 03 9815 1266.

MEMBERS WHO ARE UNWELLWe send our thoughts and best wishes to members who are ill at present, or who may be experiencing another flare-up, or recouping from surgery. We wish you a very speedy recovery. Take care.

ACCA News


The following IBD national research projects seek the voluntary participation of individuals and/or family members with IBD.

NATIONAL AUSTRALIAN PAEDIATRIC AND ADOLESCENT DATABASE PROJECT:Parents of children or adolescents with IBD and /or young adults up to the age of 18 years of age living anywhere within Australia are invited to register and participate in the national database project.

You can either discuss with your treating doctor or contact ACCA for a brochure and application form.

Phone ACCA Office 03 9815 1266 or email to [email protected] or download at ACCA website www.acca.net.au

NATIONAL AUSTRALIAN AND NEW ZEALAND IBD FAMILY RESEARCH PROJECT:Any families with more than one person diagnosed with IBD, living in any state or territory in Australia or New Zealand, are being sought to participate in the family research project. This research is to help identify the gene(s) in Crohn’s and colitis.

Phone ACCA Office 03 9815 1266 or email to [email protected]; for a brochure and application form.

Australian Research Project - Seeking Volunteers

Donations

A sincere thank you to the many members and non-members alike, who continue to support ACCA’s services and research efforts through donations and in-kind support.

2006 CHRISTMAS AND NEW YEAR DONATION APPEALA big heartfelt thank you to the individuals, families and companies that donated to the Christmas and New Year Appeal. Your generous donations, whether it was $2 or $2,000 helped us raise an impressive total of $19,428. Give yourself a pat on the back!

We would like to acknowledge and thank the following individuals and organisations for their very generous donations:

• Probuild Constructions $2500

• Geoffrey Vince $700• Mansel Ismay $500• Anthony Burt $500• Bruno & Erica Camarri $500• Shane Gluskie $300• Tony Brien $250• Annette Lord $200• Ben Boyd $200• Gregory Watts $200• Helen Bainger $200• Industrial Control Engineering P/L $200• Tony Hassard $200• Judy Becher $200• Lesli Berger $200• Milla Leah $200• Nora Barrow $200• Prue Maguire $200• Samuel Hassard $200• SPF Asia Pacific $200• John Lyle $100

In Memory of Barry W. Baker $250Thank you to the family & friends of Barry Baker, who kindly donated money in his memory to the Australian Crohn’s and Colitis Association. Please accept our deepest condolences; our thoughts are with you at this very difficult time.

MONTHLY DONATIONSThank you to E.H. who generously donates $50 towards research every month by direct debit.

Thank you to H.F. who generously donates $20 to ACCA every month by direct debit.


Help put IBD on the Map - While having Fun and Raising Funds!If you would like to help raise awareness and fight IBD – now you can, by holding a community fundraising activity for ACCA.

Help us raise $40,000 in 2007 through community events and activities that are fun, low cost and help raise the profile of IBD. All funds raised go directly to fulfilling our mission of finding a cure for IBD, raising public awareness of the diseases and helping people face the daily challenges of living with IBD. 2007 is an important growth year for ACCA and we need everyone to support the efforts to put Crohn’s and colitis on the map!

There are many ways you can help. You can:

• Hold an auction or garage sale with proceeds going to ACCA• Organise a trivia night or hold a BBQ, luncheon or dinner party and ask for donations• Have a car washing weekend• Hold a raffle or a morning tea at work• Ask your employer or local business to match the donations you raise “ dollar for dollar”• Get sponsored to give something up e.g., TV or your mobile phone for the month of June• Hold a party, supply drinks, food, music and put a cover charge to cover expenses as well as an extra $10.00 per person as a donation• Hire out your services - cleaning windows, mowing lawns, handy man jobs etc• You can celebrate your special occasion with ACCA, you can ask friends and family to help you celebrate your wedding, birthday, anniversary, Christening, Bar Mitzvah or any other special occasion by making a donation to ACCA instead of buying a gift.• Hold a fun run or bike ride and raise funds for ACCA

Remember all donations over $2.00 are fully tax deductible. ACCA will issue receipts.

No matter how small or large your fundraising efforts - the important thing is to raise money for ACCA in the most efficient and enjoyable way possible.

To help your community fundraising, ACCA has a fundraising kit (including guidelines, agreement, donor registration forms and FAQ’s) available by contacting [email protected] or by calling 03 9815 1266


Support for Today – A Cure for Tomorrow

ACCA’s strategic priorities for 2007-2012

Having arrived at a new chapter in the development of ACCA, the question we faced late last year was how to take ACCA from a solid voluntary organisation with well respected programs, to a strong national body with a high profile, sound financial growth and a place on the national health care agenda – without losing the goodwill and relationships that have been built over the years.

To help us answer this question, we called on the expertise of strategy consultant Sharon Butler who took the Board and senior management through a strategic planning process. The process took into account the ACCA customer satisfaction survey that was conducted in 2005, an internal and external environmental analysis using various strategic tools and feedback received from health professionals and sponsors. The result is a set of clear goals underpinning a vision for the organisation and mission to lead us into the future.

MISSIONTo support the Crohn’s and Colitis community with a focus on confidential support programs including education,

advocacy, counselling, increasing awareness and generating and utilising funds for research and support.

STRATEGIC GOALS

To support people with Crohn’s and Colitis and their families through advocacy, education and counselling.

To raise awareness and common understanding of Crohn’s and Colitis across government, business, media, general community and the medical and health sector to assist with early diagnosis.

To generate and allocate funds for research and support programs.

To develop structures to collaborate with volunteers, research organisations, medical and health professionals.

To develop and maintain the highest levels of integrity in corporate governance and effective and efficient business practices.

VISIONSupport for Today – A Cure for Tomorrow

“An organisation committed to finding a cure while providing support for the care and wellbeing of people living with Crohn’s disease and Colitis in our society.”

Operations Plan 2007Each year we will develop an operations plan to support the achievement of the goals and objectives outlined above. Our 2007 operations plan is currently being implemented and our performance will be evaluated against a set of performance measures detailed in our operations plan.

ACCA’s strategic plan 2007 - 2012 was developed mid 2006. The Board of Directors will regularly review the 2007 - 2012 plan and make any changes as required.

To help us achieve our fundraising goals, we welcome Jo Burrows to the growing team at ACCA as our inaugural Fundraising Manager. Jo comes to us with a wealth of experience having made great progress at the MS Society, Stroke Foundation and the National Asthma Council. Jo has a challenging and important task ahead of her and we have every confidence that our members, friends and supporters will get behind our current and future fundraising initiatives.

A Summary of Reports: Aust Gastroenterology Week 06

There continues to be a strong culture of inflammatory bowel disease research in Australia and New Zealand as seen by papers presented at Australian Gastroenterology Week in Adelaide in October, 2006. Following are short summaries of some of the IBD papers presented at this meeting.

Safety of Breast-feeding while taking Azathioprine or 6-MPA/Prof Barclay presented a study of four mother-infant pairs in which the mother was taking azathioprine or 6-MP. Blood levels of azathioprine breakdown products were measured in both mother and infants (who had been exclusively breastfed for at least three months). While the levels were normal in the mothers taking the drug, no sign of the drug could be found in their infants. This study suggests that these drugs may be safe in breastfeeding, although this should be assessed on a case by case basis and further supporting data is required.

Why does an appendicectomy protect against later developing ulcerative colitis?Dr Ng from the St George Clinical School, Sydney presented research explaining why people who have previously undergone appendicectomy are less likely to go on to develop ulcerative colitis than those who have not. Using a mouse model of colitis, the researchers were able to demonstrate that inducing appendicitis and performing an appendicectomy at a young age prevented colitis, but not at an older age. The reason for this observation appeared to be due to a change in the make up of specific types of white cells in the bowel.

What effect do probiotics have on the small bowel?CL Smith from the University of Adelaide presented a study of probiotics in a novel mouse model of small bowel inflammation. They then compared the effect of four probiotic organisms on the degree of inflammation and showed that one of the four chosen probiotics reduced inflammation.

The environment and Crohn’s diseaseDr Richard Gearry from Box Hill Hospital, Melbourne presented a study performed in Christchurch, New Zealand. This study compared childhood and pre-IBD environmental factors in 672 people with Crohn’s disease and 599 controls. They found that family history of IBD, smoking, tonsillectomy,


contraceptive pill use, higher social class in childhood and urban living were associated with IBD. Novel associations included the protective effect of being breastfed (for more than three months) and having a vegetable garden at ones home in childhood.

MRI of the small bowel in Crohn’s diseaseDr Kalade from St Vincent’s Hospital, Melbourne presented a study comparing small bowel MRI with CT scanning of the small bowel. The researchers showed that MRI was an effective alternative that often provided additional information. Furthermore, MRI exposed the patients to no radiation, making the investigation safer.

Disease-related knowledge in children with IBD and their parentsDr Andrew Day from the University of New South Wales, Sydney presented a study of children and their parent’s knowledge of IBD. In collaboration with ACCA, the researchers received data from 173 families of children with IBD aged 10-18 years. Overall parents had better knowledge than their children did. However, gaps in knowledge existed in some important areas such as side effects of drugs, effects of disease on growth and cancer risk, and complementary therapies. This study shows the importance of education of children and parents, which may lead to improved compliance with children.

Presentation of paediatric IBD in AustraliaOn behalf of the Australian Paediatric and Adolescent IBD Study Group, Dr David Moore from the Children, Youth and Women’s Health Service, Adelaide presented a study of 1484 children with IBD from around Australia. It found children with Crohn’s disease usually present at an older age than those with ulcerative colitis. Unlike adult presentation, paediatric Crohn’s disease is more common in males than females. This study provides excellent information concerning IBD in Australian children.

My name is Maria Pantelis, and this story is about my

daughter Katerina, who was diagnosed with ulcerative

colitis one year ago, at the tender age of six. She has

had a very difficult and stressful year. It all began when

she complained of abdominal cramps and the need to

run to the toilet for diarrhoea. We were putting it down to

something she ate. This was going on intermittently. But

her incontinence became worse to the stage where she

would not feel it coming and when she did, it was too late.

You can only imagine her embarrassment at school.

Throughout this time she would constantly suffer diarrhoea.

We asked ourselves could it be something she’s eating?

Could a virus last this long? There were all these ‘could

be’s’. Then one night as soon as I got to work my husband

telephoned in panic. Katerina did not make it to the toilet

in time again, but the reality hit that there was something

seriously wrong – there was now blood in her bowel

movements.

Our GP sent us immediately to the Women’s and Children’s

Hospital where she was seen by the Gastroenterology

team. She underwent an endoscopy and colonoscopy.

That is when the diagnosis was confirmed. What a shock

Personal Time with Maria Pantelis

to be told that it was a lifetime problem and there was no

cure, only maintenance.

She was put on Sulphasalazine and steroids. Within two

weeks a small rash started developing on her leg and within

20 minutes it had spread rapidly. She became limp and

lifeless and was burning up. We were rushed to hospital

where doctors suspected Katerina had meningococcal

infection. We were shocked, scared. What’s happening?

Before we knew it, Katerina was in isolation and on two

drips with antibiotics to counter that horrid disease. She

was getting worse. Her face and neck were swelling and her

temperature rising. All we could do was think the worst. I

will never forget, with a tear running down her face Katerina

saying “don’t cry mummy I will be ok”.

The doctor told us if the drugs didn’t work straight away,

then it was not meningococcal. Katerina was getting worse

and the tests came back showing a severe allergic reaction

to Sulphasalazine. She spent five days in hospital being

treated.

She was put on Mesalazine then Olsalazine, which made

her symptoms more severe. Our doctor suggested that we

stop all medication and watch Katerina’s progress. We saw

a dietitian in the hospital who told us there was no special

diet for people with IBD. We were advised to remove fatty

foods and junk. I looked up ACCA and they suggested

avoiding legumes that are difficult to digest, acidic foods

and drinks. Other tips included feeding Katerina cooked

vegetables, not raw, and peeling the skin from fruit. Using

that information Katerina was symptom free.


“Katerina avoided friends’ birthdays, as she knew she could not eat what

others did. She started understanding why we had to restrict her diet, as she

did not want the pain.”

Katerina avoided friends’ birthdays, as she knew she could

not eat what others did. She started understanding why we

had to restrict her diet, as she did not want the pain. In the

meantime her doctor was happy with her progress. Another

test revealed she was lactose intolerant. We requested a

yearly colonoscopy to keep an eye on things, as a cousin

has Crohn’s disease and an uncle and auntie on both sides

have just been diagnosed with bowel cancer.

The test was done last month and it showed her bowel was

completely normal. The great news was Katerina had no

inflammation at all. The doctor said perhaps she never had

UC and we could put her illness down to a virus. Part of us

was elated, but the other half was doubtful. Could she be


in remission? I had read that people have a clear bowel and

need to watch for a flare-up. Could this be the case?

Then bang our doubts were confirmed when Katerina had a

recent attack. We still feel like we are searching for answers.

We suspect we are not alone in this. Has this happened to

anyone else? Where do we go from here? If anyone has

information that can help us, please write to ACCA as your

input can help a lot of others dealing with this disease.

Thanks for this opportunity,

Maria Pantelis.

“All we could do was think the worst. I will never forget, with a tear running down her face Katerina saying “don’t cry mummy I will be ok”

It feels like just yesterday that school finished for the holidays and now it is time to start all over again. I am very excited as today is orientation day and I had my first introduction to the diploma of Arts (Visual Arts) course I am studying this year.

I was very nervous, as I don’t know anyone doing the course and I had no idea what to expect. I had no need to worry, as once I settled in, it felt strangely natural (even though I was freaking out that I might need to run out of the lecture theatre to find a bathroom and miss a vital piece of information).

I hope everyone had a great holiday. I was lucky enough to go on a family holiday to Thailand for ten days. While there I went snorkelling, shopping, on tours and had many massages as they were very cheap and very enjoyable.

I was surprised when needing to use a bathroom that most of the time you pay to enter or pre-buy your toilet paper. It was never very expensive, no more then the equivalent of 50c Australian. You were also more likely to find cleaner facilities if you pre-paid to get in.

While in Thailand, I was lucky enough to visit the Sriracha Tiger Zoo. They have a very successful tiger breeding program that uses pigs as substitute mothers and babies. I was able to hold a baby tiger, crocodile and orang-utan. I also got to feed an elephant and be lifted up by one with its trunk, which was scary and a little painful, as the elephant was covered in rough hairs that scratched my arms and legs. But it was well worth it!


Ask Alex & HaileyIf you have any questions or suggestions for subjects to write about please email me at [email protected] with Ask Alex & Hailey in the subject line. I really would love to hear from you!

This section is all about you – so don’t forget to send in your artwork, poetry, or a funny photo. Anything about you that may interest other teens and tweens!

If you have anything you would like to send email us at [email protected] with “Your Turn” in the subject line.

Your Turn!

I love Thailand. It has some of the world’s most beautiful Buddhist temples and huge Buddha statues. One is so big I could not get a complete photo of it! The weather was beautiful and it is easy to get around. We also enjoyed riding around on so-called “mini-buses”, which travelled in a loop and cost less then one dollar. They were actually like a ute that had bench seats on the sides and a roof. The drivers would stop to pick you up and then drop you off wherever you asked. Beats walking in the heat!

We would love to hear about any of your great holidays or travelling tips, so send them in!

ALEX

A dog was the first in space and a sheep, a duck and a rooster the first to fly in a hot air balloon!

3


If you have any interesting facts let us know at [email protected] with “Did you know?” in the subject line.

Did you know??A diamond is the hardest natural

substance on earth, but if it is placed in

an oven and the temperature is raised to

about 763 degrees Celsius (1405

degrees Fahrenheit), it will simply vanish,

without even ash remaining. Only

a little carbon dioxide will have been

released.

3 There are more than one million animal

species. There are 6,000 species of reptiles,

73,000 kinds of spiders, and 3,000 types of

lice. For each person there are about 200

million insects. The 4,600 kinds of mammals

represent a mere 0.3% of animals and the

9000 kinds of birds only 0.7%. The most

numerous bird species is the red-billed

quelea of southern Africa. There are

an estimated 100 trillion of them.

3

The year before, French confectioner, Nicolas Appert, had introduced the method of canning food (as it became known) by sealing the food tightly inside a glass bottle or jar.

3

The can opener was invented 48

years after cans were introduced.

Cans were opened with a hammer

and chisel before the advent of can

openers. The tin canister, or can,

was invented in 1810 by a Londoner,

Peter Durand.

3

The first vending machine

was invented by Hero of

Alexandria around 215 BC.

When a coin was dropped

into a slot, its weight would

pull a cork out of a spigot

and the machine would

dispense a trickle of water.

These facts are compiled from the infinite

resource of the www.

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Ask Our Experts

Question:I am a member of ACCA and have a question for the experts please. I am 58 and was diagnosed with ulcerative colitis 35 years ago and have lived with this disease all my adult life. Recently I had some routine blood tests with the results showing abnormal liver function. Additional investigation including a liver biopsy has resulted in a diagnosis of autoimmune hepatitis. Can I have any advice and comment on the relationship between the two diseases please?

Answer:Autoimmune hepatitis is a separate condition that does not usually represent a complication of UC. However, there is an increased frequency of autoimmune disorders, including this one, occurring in people with UC. It usually requires treatment with steroids or immunosuppressives, because untreated can cause progressive liver damage. There is a different condition called primary sclerosing cholangitis (which mostly affects the bile ducts and later the liver tissue) that has a more classical association with UC, but it is not the same as autoimmune hepatitis (which usually affects the liver tissue and not the bile ducts).

Dr William Connell, Gastroenterologist Director IBD ClinicSt Vincent’s Hospital, Victoria.

Question:I suffer with Crohn’s disease and have 2 children who are 6 and 9 years old. Please can you let me know what the chances are of them also developing the disease and if there is anything I can do to reduce this risk?

Answer:We know that genes play an important role in the development of IBD. It is, therefore, unsurprising that people who have IBD sometimes worry about the risk of one of their children also getting the disease. However, research has shown that there is more than one gene involved with more being discovered every year.

It is also important to remember that many other factors are involved in the development of IBD. It is, therefore, difficult to give exact estimates of the risk of getting IBD if you have a first-degree relative (i.e. a parent, sibling or child) who has either Crohn’s disease or ulcerative colitis.

Currently, we think the risk of an offspring of someone with Crohn’s disease also developing Crohn’s is probably in the order of 5-10%, while that for UC is a little less. The risk is slightly higher than this for siblings of someone with IBD, but a little less for parents. We also know that having more than one first degree relative with IBD increases the risk further and that in the very rare situation of both parents having IBD, that there is a considerable increase in risk that any of their children will also develop IBD.

As with many conditions in which genes play a role, there are some racial groups who are at higher risk. For example, in some parts of the Jewish community the risk is a little higher than those quoted above.

As to preventing offspring getting Crohn’s, breast-feeding is probably protective and children of parents with Crohn’s should never smoke (when they are old enough!). Possibly passive smoking is a risk but there is very little data on this. If either parent is a smoker then they should probably stop.

Dr Peter Irving, GastroenterologistBox Hill Hospital, Victoria

Question:I am a 40-year-old man with Crohn’s disease. I have had two resections of my small bowel and take Imuran and Mesalazine. My doctor tells me my Crohn’s disease is in remission but I am constantly troubled with diarrhoea. Is there anything I can do to help reduce the amount of diarrhoea I suffer?

Answer:Diarrhoea is a common symptom associated with Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis.

Diarrhoea in IBD may be a result of active disease in the colon where there is swelling and ulceration (inflammation). The colon therefore does not absorb the excess water in stools, resulting in loose stools or diarrhoea. It is imperative to treat the underlying inflammation in order to relieve the symptoms and to prevent worsening of the condition.

Another common cause of diarrhoea is bile salt irritation. Bile is produced by the liver and is important for fat digestion. It is usually reabsorbed in the terminal ileum (the last part of the small bowel). If the terminal ileum is affected by active Crohn’s

Send your questions by email to [email protected] or post ACCA, PO Box 2160 Hawthorn 3122. Please note that our experts can only address your questions in general terms and their responses are not a substitute for a visit to your own treating doctor.


disease or if it has been removed by surgery, excessive bile is released into the large bowel and subsequently results in diarrhoea.

A lower fat diet or the use of Questran (Cholestyramine) may help this. Your specialist can advise on the dose, which needs to be titrated carefully to avoid constipation. Questran may interfere with the absorption of some drugs so it is important to check with your doctor or pharmacist.

A number of people may have diarrhoea due to food sensitivity (or intolerance). This is not the same as food allergy, which is very rare and involves the body immune system producing antibodies to a specific food substance.

In some cases sensitivity results in a reaction to some food substances although the immune system is not involved. Some of these culprits may be milk, wheat, excessive fibre and fructose (a common sugar found in fruit). They may cause abdominal discomfort, bloating, abdominal pain and diarrhoea. Identifying the problem foods and reducing their intake may provide relief. Advice from a qualified dietitian would be worthwhile.

Common drugs used to treat IBD can also cause diarrhoea in some people. These include the 5-Aminosalicylates such as Olsalazine (Dipentum), Mesalazine (Salofalk or Mesasal) and Balsalazide (Colazide). It may be possible to change to a different formulation if this is indeed the cause of the diarrhoea. Your specialist will be able to advise. Iron supplements can also cause diarrhoea (or constipation) in people with IBD.

The use of antidiarrhoeal medication can be helpful such as Lomotil and Loperamide (Gastrostop). However it is important to ensure that any inflammation caused by Crohn’s disease and ulcerative colitis is treated first.

Lai WanIBD Clinical Nurse Specialist

Your words can inspire, encourage and help others. We appreciate your feedback, so please send your letters by email to [email protected] post to: ACCA, PO Box 2160 Hawthorn 3122

IBD vs IBS

Hello, The new look magazine continues to improve – well done. Could you please consider doing an article to clearly define the difference between IBD and IBS. So many people get them confused and as we know, IBD is the one we should pay more attention to. IBS can usually be managed a different way and having IBS doesn’t mean you have or will get IBD.

Maxine WadeNeutral Bay NSW

Editor’s Note – Thank you Maxine for your comments. We have included an article on the topic in this edition of the National Magazine.

THANKS ACCA!

I am an elderly lady with Crohn’s disease who is very grateful for the information contained in your newsletters.

ACCA is doing a wonderful job in circulating the latest methods of treating this insidious disease and I do hope you are able to find a sponsor to help you with funds so that ACCA can continue with their good work.

Joan Scanlan COMO WA

MEMBERS’ NETWORK

A 29-year-old woman with Crohn’s is seeking a penpal. Interests include writing, literature and reading. Wishes to contact/email others with Crohn’s or colitis with similar interests in their late 20’s mid-30’s.

Please contact [email protected] with your replies, placing “Pen Pal” in the subject line.

Letters to the Editor


My name is Zaun Bhana. I am 30 years old, married to my lovely wife Michelle and we have an 18 month old baby boy named Makan. I own an IT business called LEAP Consulting with a business partner that employs four staff and I have just bought my first house.

I am also living with ulcerative colitis.

I was first diagnosed with UC back in June 2001 after going to a GP because of the symptoms. He referred me to a gastroenterologist who after a colonoscopy and some blood tests soon confirmed I had active colitis. At the time it was not a condition I had heard anything about and I didn’t know anyone who had it. To me it seemed like an inconvenience rather than a disease and with some Salazopyrin medication I was soon back to normal and on my way to relocate from Darwin to Perth in September 2001.

Within a month my wife and I had both started new jobs in Perth and we were saving for our wedding which was scheduled for November 2002. My UC was not flaring and other than the medication I had to take daily it was not of any real concern.

This all changed in April 2002. I started to exhibit the same symptoms as when I was first diagnosed, which was stomach cramping, excessive bowel motions, weight loss and then bloody diarrhoea. I was placed on a high dosage of Prednisolone, which failed to alleviate the symptoms and by the start of May 2002 I was in hospital.

After another colonoscopy and large amounts of Hydrocortisone via IV I was starting to stabilise. I had a bedside visit with a colorectal surgeon to discuss the potential of removing the portion of my infected bowel should I elect to go down that route. I finally made it out of hospital at the beginning of June 2002 with an expectation that the worst was behind me.

Zaun Bhana tells of his experience with Infliximab & UC


With our wedding still five months away we kept our bookings as the majority of our guests and family were flying in from the Northern Territory and interstate and they had already paid for their flights.

Within a couple of weeks however, I was back in hospital. For a month I tried various doses and medications to reduce my inflammation and get my condition under control. By late July with all options exhausted and me not willing to entertain surgery, I was submitted for a trial of Infliximab at Fremantle Public Hospital.

By this time I had exhausted all our savings, had used up what little sick leave and holiday leave I had and even with Michelle’s salary we were still having to rely on my parents for financial support to survive.

My last roll of the dice was thrown and I received the Infliximab dose. The fork in the road for my life was waiting for the results of this drug along with the prayers and hopes of my family. Almost like a bolt of lightning my system began responding and within days I was on the mend. Infliximab had returned my system to normal. Within two weeks I

Australia’s Therapeutic Goods Administration (TGA) has given doctors the go ahead to treat ulcerative colitis patients with Infliximab (REMICADE®).

The approval follows two ground-breaking clinical trials which found Infliximab to be effective in reducing the signs and symptoms of ulcerative colitis and inducing clinical remission. The study shows more than 60 percent of patients treated with Infliximab achieved mucosal healing at eight weeks of treatment with approximately 50 percent maintaining positive results at 30 weeks. Those treated also experienced 50 percent fewer hospitalisations compared to the control group.

The indication approval has been welcomed by bowel disease specialists and patient advocacy groups nationally as a “landmark” in the treatment of UC.

Professor Peter Gibson, Former President of the Gastroenterological Society of Australia (GESA) and Head of Gastroenterology, Box Hill Hospital, Victoria, said: “Infliximab fills a vital gap in the treatment spectrum providing long-term patient benefits which existing therapies for ulcerative colitis often fail to deliver.”

“When linked to the fact that almost a third of ulcerative colitis patients will undergo a colectomy, the surgical removal of the colon, the indication approval offers hope to people with ulcerative colitis who have had few effective treatment options to combat this debilitating disease,” he said.

According to ACCA’s CEO Francesca Manglaviti, the approval of Infliximab is a significant step in improving quality of life for patients living with ulcerative colitis.

“Many ulcerative colitis patients suffer severe emotional and social distress as a result of their symptoms. Even with existing therapy a recent survey found that over 75 percent of patients reported recurrent symptoms which continued to impact on their ability to enjoy a normal life. 86 percent of patients also reported they would rather try a new therapy than face surgery,” she said.

was back at home with my wife planning our wedding day (without all the extras) and on the 19th of August 2002 I returned to work.

On November 9th 2002 we were finally married.

Infliximab is not just about helping people with Crohn’s and colitis. It is about helping their family, their friends and the community. The ripple effects from these conditions are not isolated to a small group of people. Those people afflicted impact their family, their workplace, the health system and the community in general.

For me, the option to start a business, employ staff, have a child and even buy a house may not have occurred if I had undergone surgery instead of having access to Infliximab. The long term costs of surgeries, recovery, medication and patient support all far outweigh the short term costs of making Infliximab available through the PBS not to mention the lost revenue from not having a productive member of the community actively contributing.

Without the opportunity the Infliximab medication gave me I doubt I would be where I am today.

Regards,

Zaun BhanaPerth


TGA Approves Infliximab for Treatment of Ulcerative Colitis

“Almost like a bolt of lightning my system began responding and within

days I was on the mend. Infliximab had returned my system to normal.”

IntroductionWe seldom notice our digestive system working unless something goes wrong. Two conditions that merit attention for different reasons are Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS). IBD is important because its treatment is very specific. IBD can also be severe and life threatening. IBS, on the other hand, is benign although common and can be very troublesome.

One can get confused between the two conditions as they affect the bowel, occur in otherwise healthy young individuals, and their names sound similar. What makes this more difficult is that both conditions may coexist in the same person. The two conditions, however, are quite different in their cause, progression and the way they affect patient’s life and outcome. Here we briefly review both conditions and illustrate the pertinent differences and similarities.

Irritable Bowel Syndrome (IBS)IBS is common affecting about 20% of the population at any one time. IBS is also called ‘spastic colon’, ‘mucous colitis’, ‘spastic colitis’, or ‘nervous stomach’. The disorder is functional, meaning that blood tests, colonoscopy and bowel biopsies are normal. Typically patients have bloating, altered bowel habits (diarrhoea and/or constipation) and abdominal discomfort relieved with defecation.

There is no clear cause of IBS although hypersensitivity of the bowel, increased anxiety levels and food allergies have all been suggested. No gene has been identified in causing IBS. At least 10% of patients had infective gastroenteritis prior to developing IBS. Mental or emotional stress may trigger or worsen IBS and therefore stress management is an important part of treatment. Physical examination is normal. There is no specific diagnostic test for IBS and initial screening requires only history and physical examination. Routine blood tests should be done but over testing should be avoided.

The aim of treatment is to reassure and educate the patient of the condition, control symptoms, and to attain normal or near normal life style. The therapeutic approach of IBS starts with reassurance of the absence of life threatening disease. Dietary advice should be provided by the doctor or a dietitian. Concurrent conditions such as lactose or fructose malabsorption should be considered and managed. Fibre content of the diet should be adjusted according to the bowel habit and according to the presence or absence of bloating. Probiotics (living organisms) can be beneficial for bloating. Different classes of medication are used in treating IBS including anti-spasmodics for pain, peppermint oil, and some anti-depressants. Treatment should be individualised.

Inflammatory Bowel disease IBDIBD refers to two chronic diseases that cause inflammation of the bowel: ulcerative colitis (UC) and Crohn’s disease (CD). In IBD and unlike IBS, there is a cellular and structural damage in the bowel wall. The damage is driven by an immune response.

The cause of IBD remains unknown but genes and the environment both influence the disease. IBD is far less common than IBS. UC affects only the large intestine to different extents. CD on the other hand can affect any part of the gastrointestinal tract. Commonly, this is the end part of the small intestine, called the ileum. The inflammation in CD generally tends to be deep and involves the entire thickness of the bowel wall. This may lead to fistula (abnormal passage) formation between the bowel loops, the skin or other organs. In UC the inflammation affects only the internal lining of the bowel called the mucosa.

Diarrhoea in both conditions can be significant enough to cause dehydration, low blood pressure, fainting and serious illness. There may be fever, anaemia, weight loss, lethargy, and tenderness. Complications of IBD include severe bleeding, bowel blockage, and cancer that may require surgical treatment including bowel resection. Surgery may also be necessary to treat IBD complication like abscesses, fistulas and anal fissures.

IBD can be a progressive disease and the aim of treatment is to suppress its course. Immunosuppressants are drugs that suppress the immune process and reduce inflammation. Recent advances in our understanding of the immune system and the inflammatory process have introduced us to newer classes of biological agents that have high potentials in treating IBD. Some of these biological agents have already shown good results. The table below illustrates some of the similarities and differences between IBD and IBS.

SummaryIBS is a common and benign condition that requires reassurance and often simple measures for treatment. IBD can result in severe morbidity and often requires specialist review and ongoing treatment. They can be differentiated from each other through clinical grounds and tests.

By Dr Anas Natfaji, Advanced Trainee And Dr Rupert Leong, GastroenterologistDepartment of Gastroenterology and Hepatology, Bankstown-Lidcombe Hospital, Sydney.

Page 16 • ACCA Spring 2006 Newsletter

Medical Feature

Differentiating between Irritable Bowel Syndrome and Inflammatory Bowel Disease


Irritable Bowel Ulcerative colitis Crohn’s disease Syndrome

Incidence Common Uncommon Uncommon

Male/Female F=M (although M > F F > M more females present to doctors)

Age Young to middle Young Young aged

Pathogenesis Functional Inflammatory Inflammatory

Aetiology Hypersensitivity Immune response Immune response

Family history 10% 10-30% 10-30%

Organ affected Small and large Large bowel All gastrointestinal bowel system

Main symptoms Pain, bloating, Diarrhoea, rectal Abdominal pain, altered bowel habit, bleeding, abdominal diarrhoea, weight mucus discharge pain loss, anaemia, fever

Other organ Other functional May affect joints, eyes, skin, bile duct, liverinvolved complaints

Examination Normal Normal, tenderness Normal, mass, fistula, perianal abscess, fissure Investigation All normal Abnormal blood tests, colonoscopy, imaging studies

Hospitalisation Unusual Occasional to frequent

Treatment Symptomatic Immunosuppressants, antibiotics, surgery

Smoking No correlation Less common in More common in smokers smokers and smoking worsens disease

Disease progress Fluctuates in Chronic relapsing and remitting severity

Outcome Benign Potentially significant morbidity and mortality


IBD vs IBS

ACCA Education & Support Line


By Belinda Headon, Inflammatory Bowel Disease Nurse Specialist

One of ACCA’s most important functions is to provide education and support to those who are diagnosed with inflammatory bowel disease. This is done through a number of methods from hosting seminars around the country, publishing reliable and informative literature and offering support over the telephone.

Traditionally the telephone service was delivered by dedicated staff that had first hand experience in living with the disease. However last year, I was asked to join the team with one of my roles being to provide professional support and advice to our callers.

I only moved to Australia two years ago from England. In the UK I worked as a ward sister of a gastroenterology and surgical colorectal ward. One day while on duty I met an Australian girl who had been admitted to my ward due to a flare up of her Crohn’s disease. Like most young Australians you meet in London, she was taking a year out travelling.

However, her unplanned sight-seeing tour of my hospital turned out to be my first real introduction to what it was like living with Crohn’s disease. One evening she said to me, “Belinda, if I could have one wish it would be to be able to go to a pop concert at Wembley!” – I was totally shocked by this statement and the look of confusion on my face must have spoken words as she smiled and said; “Can you imagine queuing for the toilet with a crowd of 100,000 people!”This was the start of my future career specialising in IBD.

After completing further nursing qualifications in gastroenterolgy and nutrition I then went on to be a ‘Clinical Nurse Specialist’ in inflammatory bowel disease. In the UK many big hospitals provide this specialist service which is focused on supporting, educating and treating patients with IBD. Patients could ring a ‘helpline’ if they just needed general advice or support, or if they were running into difficulty between appointments and needed to be seen urgently in the clinic.

The ACCA education and support line provides a similar telephone service for patients in Australia. Callers who ring ACCA are first asked about the nature of their inquiry. Details are then forwarded to me and I endeavour to return calls in a matter of days. While my advice should never replace that of your own doctor, I am able to provide detailed education on particular aspects of the disease. My aim is to be able to educate those who wish to use the service to enable them to make informed decisions about their care.

Callers include those who have just been diagnosed and those who may have lived with IBD for many years. They may be the person the disease affects, the partner, the mother or even a friend. Some people may only ring once, while others may frequently use the service. The only thing that you can predict about living with IBD is that it is unpredictable! The disease and all the different treatment options, and the ways it impacts on peoples lives provides an endless supply of questions, fears and anxieties.

I think the more you understand about what is happening in your body and how your medications work, the more you can be in control of your disease. For this reason I feel the ACCA education and support line is an invaluable service. However, I would like to reiterate, this is not an emergency service and the advice I provide does not replace the need for seeing your doctor.

“Callers include those who have just been diagnosed and those who may

have lived with IBD for many years...the only thing that you can predict about

living with IBD is that it is unpredictable!”


Ask Our Experts – Nutrition

Question:I am a 20-year-old girl who has recently been diagnosed with Crohn’s disease. I am currently taking prednisolone and salafolk, which seems to be helping. Please can you tell me if there is a special diet I should be following to help manage my disease?Name Supplied.

Answer:Unfortunately there is no magic diet for the management of Crohn’s disease, but eliminating certain foods from your diet may assist in alleviating some of your symptoms. Different diets have been trialled in the past such as lowering insoluble fibre intake (nuts, seeds, fruit and vegetable seeds and skins) in an attempt to reduce the amount of fibre that enters the bowel and hopefully reduce the frequency and volume of diarrhoea.

Occasionally people do get relief from doing this, but it tends to be of minimal benefit. More recently, there has been discussion about the fact that diet may play a role in the functional gut symptoms of Crohn’s. Certain dietary carbohydrates may contribute to symptoms such as bloating, abdominal pain, wind and diarrhoea in Crohn’s disease as well as in other gastrointestinal disorders such as irritable bowel syndrome.

Fructose, lactose, fructans, sorbitol and raffinose (FODMAPs) are carbohydrates which when poorly absorbed, pass through the small intestine and are fermented in the large intestine. This fermentation process releases gas, and the carbohydrates bring fluid through to the large intestine. It is this outcome that leads to diarrhoea, abdominal cramping, wind and bloating.

Dietitians that specialise in gastrointestinal nutrition will be able to determine which are the problem carbohydrates for you and assist you in trialling dietary therapy to alleviate your symptoms. Malabsorption of fructose and lactose can also be diagnosed through hydrogen breath testing which your dietitian may also be able to help you organise.

Jaci BarrettDietitian

Nutrition News

Dietitians Association of Australia: Victorian Gastroenterology Interest Group

The Victorian DAA Gastroenterology Interest Group (GIG) is a group of dietitians who have expertise and/or a special interest in the area of gastrointestinal nutrition. Our members include dietitians working in the clinical setting, private practice, research and community positions throughout Victoria. The philosophy of our group is to foster continuing professional development, evidence-based care, and excellence of practice in the management of gastrointestinal disorders.

It is a very popular interest group, with around 200 dietitians registered. Most communication is via email and ‘The Vic GIG’ newsletter, which is put together by a smaller core group of members. These core members meet regularly throughout the year to discuss the running of the group, share information and plan GIG seminars and activities. We also enjoy a yearly dinner outing for the pure purpose of socialising and gossiping!

The newsletters cover a variety of topics, and help to keep our members up to date in gastrointestinal nutrition. Regular topics include research updates, reviews of current literature in the field, recent seminars, and updates from other groups such as the Coeliac Disease Working party. On the lighter side, we also provide new product reviews, regular dietitian ‘profiles’ and recipes of interest.

One of the main continuing education activities provided for members is the yearly ‘Gut Reaction’ seminar. This hugely popular event is held at St Vincent’s Hospital, and is a great chance for dietitians to socialise and network, as well as learn. In addition to presentations on important areas such as Coeliac Disease, IBD, IBS and liver disease, we have also covered such varied topics as hypnotherapy and gastric pacemakers! In the past, members have also found that smaller ‘workshops’ are fantastic for teaching practical tools for client education and care.

The GIG awards a gastroenterology student prize for excellence of practice in the area of gastroenterology. This is judged by a panel of GIG members according to selection criteria, and awarded annually at the Victorian Branch Annual General Meeting. We also keep in regular contact with associations such as ACCA, to share information and expertise in the form of regular articles and updates on nutrition. We would like to recognise our core members for their time and hard work!

Marnie Nitschke, APDVictorian GIG member

Does complementary medicine have a role to play in the treatment of ulcerative colitis? One of the main aims of complementary medicine is to keep patients in remission for as long as possible. For some people this is achievable using complementary medicines, whilst others need a more combined approach and benefit from using complementary medicines alongside standard medications. This often enables the patient to use lower doses of conventional medications less frequently, thus reducing unwanted side effects.

How can complementary medicines help? Ulcerative colitis is often considered to result from severe immune dysfunction. Many herbal medicines are effective in modulating immune function, such as Echinacea angustifolia (echinacea) and Astragalus membranous (astragalus). Antioxidants are also crucial as free radical production further damages the digestive and immune systems. Nutrients such as vitamins A, C and E, the minerals zinc and selenium and herbs such as Silybum marianum (St Mary’s thistle), Curcuma longa (turmeric), Vaccinium myrtillus (bilberry) and Camellia sinensis (green tea) are important considerations here.

Two recent clinical trials have demonstrated the effectiveness of curcumin, a flavonoid isolated from turmeric, in ulcerative colitis. Curcumin is a natural antiinflammatory agent, capable of inhibiting inflammation in its initial stages. The most recent of these trials showed that curcumin in combination with standard medication was more successful in maintaining remission. Patients were given either curcumin and sulfasalazine or mesalamine, or placebo and sulfasalazine or mesalamine. At the end of the study period 4.65% of patients receiving curcumin had relapsed as compared to 20.51% for placebo. This is an exciting result that has great clinical significance. Additionally, turmeric and curcumin have both been shown to be very safe. Other supplements and herbs that have been found to be effective in ulcerative colitis are omega 3 fatty acids, especially from fish, Aloe vera gel, and nettle (in vivo).

Mucin is an important substance that helps to protect and repair the lining of the gastrointestinal tract. It is often found to be deficient in patients with ulcerative colitis and this is thought to be due in part to the immune system manufacturing antibodies and actively destroying it. Mucin levels appear to be particularly low during active disease and it is for this reason that demulcent herbs are given to sooth and protect the lining of the gut. Many of these herbs are also anti-inflammatory such as Ulmus fulva (slippery elm) and Glycharriza glabra (licorice).

Recent evidence has shown that probiotics are important in both the treatment and long term management of ulcerative

Complementary Therapies


colitis and pouchitis. They appear to work in several ways by competitively excluding microbial pathogens, modulating immune function and by enhancing gastric mucosal function. Strains of bacteria that have been found to be effective include Bifidobacterium longum, Lactobacillus GG and Escherichia coli Nissle 1917. Interestingly the probiotic E coli Nissle 1917 was recently shown to be as effective as mesalazine for maintaining remission in a 12-month double blind controlled trial.

A healthy diet is essential for optimal immune function. A diet full of good quality proteins and fats with plenty of fresh fruit and vegetables is ideal. Some foods may need to be omitted from the diet for a period of time, until symptoms are under control and general digestive function has improved.

As ulcerative colitis affects the colon and rectum, nutritional deficiencies are not usually present, however iron levels need to be closely monitored due to bleeding. Increasing iron rich foods such as lean meats is often helpful, however a supplement is often necessary. It is very important to select the correct form of iron that will be easily absorbed and not cause side effects. Iron should also be taken with certain other nutrients such as vitamin C, vitamin A, B1, B6, B12 and folate as these act as co-factors and facilitate not only intestinal absorption but also cellular uptake. It should also be noted that supplementary iron could bind with sulfasalazine, reducing the absorption of both so taking these two separately is always advised.

Complementary medicine has a lot to offer those suffering with ulcerative colitis. It is always advisable to consult a professional herbalist or naturopath and remember to always tell your doctor what complementary medicines you are taking.

References supplied.

Jane Daley is a highly experienced medical herbalist and naturopath who treats a wide variety of health conditions. Jane has a keen interest in gastrointestinal disorders such as Crohn’s, IBS, Ulcerative Colitis and Hepatitis. Jane primarily uses herbal medicine, in conjunction with nutritional and lifestyle guidance, to treat presenting conditions and to assist patients achieve long term well-being. Jane practices from Salus in Armadale and is a senior lecturer in herbal medicine in Melbourne. Jane can be contacted at:

Salus - Complementary Medicine Specialists1002 High StArmadale VictoriaPh: 9500 8870E: [email protected]

Natural Solutions for IBD – Ulcerative ColitisBy Jane Daley


It is with deep regret and sadness that we farewell our young and esteemed colleague, Dr Lee Min Yap, who passed away on January 1st after a short illness.

His untimely passing brought a premature close to the promising career of this talented and dedicated gastroenterologist who quickly established himself as a leader in Melbourne in the area of inflammatory bowel disease.

After graduating in Medicine from the University of Melbourne in 1995 Lee Min undertook basic physician training at St Vincent’s Hospital. He subsequently undertook advanced training in gastroenterology at Flinders Medical Centre in South Australia under the guidance of Dr Geoff Hebbard and Professor Graeme Young. In 2002 he took up a position at The John Radcliffe Infirmary Hospital in Oxford, England, under the supervision of Professor Derek Jewell a world authority in the area of inflammatory bowel disease.

During his two year period there as a Gastroenterology Research Fellow and clinical trial investigator, he was highly productive in both clinical and academic gastroenterology. His work investigating the molecular genetics of inflammatory bowel disease and coeliac disease culminated in his award of Doctorate of Medicine from the University of Melbourne in 2005.

Lee Min returned to Australia in 2004 and joined The Alfred as a Visiting Locum Gastroenterologist. Soon afterwards he established the first IBD Clinic at The Alfred utilising his clinical and endoscopic skills to foster a coordinated approach to managing patients with IBD. In addition, he undertook clinical research in the area of IBD which included managing a number of clinical trials of new biological therapies including the first phase one trial in IBD in Melbourne.

In other key initiatives, he was instrumental in setting up the IBD database that has become a focal point in networking with other IBD Units, both within Melbourne and around Australia. His aptitude, clinical acumen and professionalism saw him appointed to the Gastroenterology Senior Medical Staff in 2006 as a Visiting Consultant Gastroenterologist.

On a personal level, he was a very pleasant and engaging young man who was dedicated and committed to his work, family and friends. He was inclusive in his approach to others and developed excellent relationships with nursing, medical and support staff within the Unit and The Alfred. Outside of work, he was a dedicated husband and father of two. He is survived by his wife, Su-Peing, and two children, Elliott and Daniel.

Lee Min will be greatly missed by all of us.

Dr Stuart RobertsDirector, Gastroenterology

ACCA wishes to extend its condolences to the family, friends and colleagues of Lee Min Yap. His enthusiasm and dedication to the treatment and study of IBD will be sadly missed. This tribute was written by Dr Stuart Roberts, Director of Gastroenterology, Alfred Hospital, Melbourne.

Tribute to Lee Min Yap (1970-2007)

Members’ Benefit Program


The following services, programs and partnerships have been developed in order to provide assistance and or benefit to members. We continue to seek out new partnerships and programs to better serve our members.

Free Superannuation, Insurance and Legal ServiceThis service is provided free of charge by Maurice Blackburn Cashman Lawyers and was introduced by ACCA approximately 10 years ago. Many members have been assisted during this time and have, through the assistance of Maurice, Blackburn Cashman Lawyers, received their proper entitlements. If any member wishes to obtain further information or requires assistance please contact the national ACCA office 03 9815 2166.

Seeking Travel Insurance for a Pre-Existing Illness?Contact your ACCA office for details of various companies that you can contact to obtain travel insurance. We keep adding to our resource list as members notify us of their successful applications and experiences.

Medication PricesAre you taking Entocort? What are you paying for this drug? Can you obtain a better price? Compare your price by contacting ACCA, we can provide details of outlets, or let us know what you are paying so we can pass the details onto other members by adding “price & outlet” to our resource file.

BooksThe Gut Foundation Booklet: ‘Inflammatory Bowel Disease’ Cost $10.00 An order form can be obtained from ACCA or downloaded off the ACCA website at www.acca.net.auThis is a great publication, which gives a general overview of IBD. A very good resource for anyone newly diagnosed.

Sue Shepherd: ‘Irresistibles for the Irritable’ Cost $40.00 (including postage).A great cookbook for anyone interested in recipes appropriate for gluten free, wheat free, coeliac disease, lactose intolerance, fructose malabsorption and irritable bowel syndrome diets. This beautifully presented book offers 130 recipes that may also assist those living with IBD.

Obtain a copy by contacting ACCA Office or download order form from the ACCA website www.acca.net.au

Dr Fred Saibil: ‘Crohn’s Disease and Ulcerative Colitis’ Your personal Health Series 2003 Edition (Canada) Key Porter Books Toronto, Canada Order from www.amazon.com (search “books” and “Saibil”)

In this revised edition, Dr Saibil explains IBD in easy to understand terms. With detailed tables and diagrams, the author guides the reader through all aspects of diagnosis and treatment. He covers a range of topics including signs, symptoms and complications, diagnostic tests, surgical options and recent genetic discoveries. He also includes travel tips and practical advice for coping with IBD.

Websiteswww.infliximab.orgLobby to have Infliximab listed on the PBS.

www.betterhealth.vic.gov.auThe Better Health Channel is a Victorian Government health website. The site covers a large range of health topics, including complementary therapies.

www.nlm.nih.gov/medlineplusMedlinePlus is a service of the US National Library of Medicine and the US National Institutes of Health. This site provides a huge range of different articles on health issues.

www.ibdtransition.org.ukProvides valuable information for young patients and their parents.

http://nccam.nih.govThe National Center for Complementary and Alternative Medicines (US) is dedicated to exploring complementary and alternative healing practices in the context of rigorous science, training complementary and alternative medicine researchers, and disseminating authoritative information to the public and professionals.

www.the-cma.org.ukThe Complementary Medical Association (UK) aims to promote ethical, responsible and professional complementary medicine to the public and the medical profession.

www.chronicillness.org.au/workwelfarewillsInformation from the Chronic Illness Alliances ‘WorkWelfareWills’ plain English web guide to legal issues around health and life changes.

Falk Symposium 2006 Member DVDAn ACCA produced DVD of the 2006 International Falk Symposium held in Sydney is now available for purchase from the ACCA office. The event attracted hundreds of doctors, scientists and patients to discuss the topic “Emerging Issues in Inflammatory Bowel Disease”.

The topics included recent innovations in IBD management, self-management, and the management of children with IBD. The DVD costs $10 and can be purchased by contacting the national ACCA office 03 9815 2166.


Researchers identify key Gene linked to IBD

A team of American and Canadian researchers known as the IBD Genetics Consortium has found what is believed to be the first of several genes linked to IBD. The gene named IL-23R was identified during a Genome-wide association study and reported in the magazine Science, (Vol. 314, 1 Dec 2006).

The study found an unexpected gene mutation that appears to confer protection against Crohn’s disease in some patients. In particular, people with the uncommon gene variation were two to four times less likely to have Crohn’s disease. The finding potentially paves the way for new diagnostic tools and drugs to treat IBD.

Because IBD tends to run in families and is more frequent in certain ethnic populations, especially Ashkenazi Jews, scientists have long suspected a significant genetic component.

According to senior author Judy H. Cho, M.D., associate professor of Medicine and Genetics at Yale School of Medicine, the team found that mutations in a receptor gene associated with the interleukin-23 (IL-23) pathway are linked to Crohn’s disease. The IL-23 pathway is known to target organ-specific inflammatory responses.

“This finding is particularly intriguing because we appear to have identified a gene variant that protects against development of IBD,” said Cho. “It causes us to think about the genetics of health as well as about the genetics of the disease. One mutation appears to offer significant protection from IBD, and will be a crucial target for drugs that might better manage Crohn’s disease and ulcerative colitis.”

Previous genetic studies found a link between Crohn’s disease and mutations in a gene known as CARD 15, but those mutations alone did not account for all of the genetic components of the disease. Undoubtedly, there are other genes” involved in IBD, Cho says. “We think that there’s likely to be at least several others.”

To identify additional genes associated with IBD, the international research team scanned the genome, testing more than 300,000 single nucleotide polymorphisms, or SNPs, in people with Crohn’s disease. They compared results with the SNPs in a similar number of people without IBD. In addition to two differences in the CARD 15 gene, they found a third variant SNP, which was in a different gene on a different chromosome—the interleukin-23 receptor.

“We know that the IL-23 receptor plays an important role in activating inflammation, including in organs of the digestive tract, therefore it could be an extremely important target for improving the management of Crohn’s disease and ulcerative colitis,” said Cho. “However, the IL-23 pathway may serve a useful purpose in protecting us from other diseases, so when seeking to block or manipulate its activity with drugs or other means, we need to take this balancing act into consideration.”

“We have the inflammatory response to fight off infection.” A better approach might be to mimic the protective gene variant, Cho suggests. “You would damp down inflammation in a way that you’re not more prone to develop infections,” she says. The gene discovery provides researchers with a long term goal to develop such drugs.

“We know that the IL-23 receptor plays an important role in activating inflammation, including in organs of the digestive tract, therefore it could be an extremely important target for improving the management of Crohn’s disease and ulcerative colitis”

Trial SummaryCurrent IBD Clinical Drug Trials In Australia

Now Open For Volunteers

ULCERATIVE COLITIS:1. Supplementary Study - Functional Foods In The Treatment Of Ulcerative Colitis Volunteers living in Melbourne required with ‘inactive’ ulcerative colitis. (Box Hill Hospital only).

2. Transit Time and Colonic Fermentation in Ulcerative Colitis In Remission and Controls.Volunteers living in Melbourne required who have in remission Ulcerative colitis, (Box Hill Hospital only).

CROHN’S DISEASE:1. Probiotic Study and Crohn’s disease Volunteers living in Perth, who have Crohn’s disease, are invited to participate in this study. Please contact the Fremantle Hospital for more information. (located at Fremantle Hospital).

To discuss a suitable site for your attendance and convenience, or to obtain verbal or written information about any of the trials, you can contact ACCA Ph: 1800 138 029.

You can also register your interest to participate on the ACCA website address www.acca.net.au

Details of any new clinical trials for Crohn’s disease and ulcerative colitis will be announced in future editions of the national magazine and website.

PLEASE NOTE: The purpose of this Trial Summary is to provide information to the IBD community about current IBD clinical trials or studies currently underway in Australia. The Association does not endorse nor ensure the scientific merit or otherwise of trials listed in this summary or posted on the website. People with IBD who are interested in participating in any study should discuss the opportunity with their treating specialists.

Shop At Ritchies and Help ACCA Serve You Better

By obtaining a community benefit card and nominating ACCA for a donation, Ritchies will donate 1% of individual sales to your selected charity.

Ritchies stores are located in Victoria at Aspendale Gardens, Balnarring, Berwick, Cranbourne, Dandenong, Dromana, East Bentleigh, Emerald, Hastings, Langwarrin, Maffra, Mt Eliza, Narre Warren, Nepean Hwy Frankston, Pakenham, Prahran, Sale, Seaford, Somerville, Towerhill, Wantirna and Wonthaggi.

Thank you very much to members who have chosen ACCA through Ritchies stores community benefit scheme. ACCA is also listed on Ritchies website under the heading of Crohn’s & Colitis Association.

OTHER STATES: If you have a similar community benefits scheme at stores in other states, please contact ACCA and let us know, so we can advise members to join up. Contact ACCA office on toll free 1800 138 029 or email to: [email protected]

Queensland Population Study ‘How common is inflammatory bowel disease in Australia?’This important study aims to get an accurate picture of the number of people who have IBD in the population which will assist with future planning in the provision of health services and funding for research. The data collected and information it will provide on the prevalence and incidence of IBD will also help to identify the possible causes of IBD.

The study is being carried out by the Brisbane IBD Research Group based at the Royal Brisbane & Women’s Hospital. People with IBD (this includes new cases as well as those in remission or have since had ‘curative’ surgery for UC) who live in the study catchment area postcodes of 4000-4078, 4101-4814, 4205, 4207, 4208, 4280, 4300-4305, 4500-4516, 4520 and 4521 are urged to take part. Contact ACCAQ on 07 5437 7662 for further details or download the information and response form at www.accaq.org.au Further information can also be obtained by phoning the study group on 07 3636 2674.


ACCA Spring 2006 Newsletter • Page 23

ACCA was established in 1985 by people who have IBD or have a family member affected by the illness. It is a not-for-profit organisation with an honorary board of Directors committed to finding a cure for IBD and providing and implementing services to assist members’ needs. ACCA 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 specific IBD publications. These publications are distributed nationally and internationally to patients and medical professionals, and to the Global Network of IBD Patient Organisations.

ACCA National Magazine Cover Design and Sponsor.ACCA extends appreciation to Henry Birman Design, 125 Thomas Street, East Brighton, Melbourne for his commitment to designing the ACCA National Magazine covers during 2007. Mr Birman has offered his services to ACCA gratis since 2003.

We also acknowledge and appreciate the ongoing support of Altana Pharma – a Nycomed company, towards sponsorship of the ACCA National Magazine.

DONATIONSAll donations of $2 and upwards are tax deductible. Contact the national office to make a donation by credit card.

DISCLAIMERACCA 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 National Magazine are not a warranty, endorsement, approval of these products and ideas, or of their safety.

ACCA disclaims responsibility for any injury to persons resulting from any of the ideas or products referred to within the National Magazine. The ACCA National Magazine cannot be reprinted, copied or distributed unless permission is obtained from ACCA. No profit can be made from the National Magazine. No information taken from the National Magazine can be placed on any website without prior permission from ACCA.

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

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

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

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

NATIONAL OFFICELevel 1, 462 Burwood RoadHawthorn Vic 3122Tel: 61 3 9815 1266Fax: 61 3 9815 1299Email: [email protected]: www.acca.net.au

AUSTRALIAN CAPITAL TERRITORYTel: 1800 220 522

NEW SOUTH WALESTel: 1800 220 522

NSW HUNTER REGIONTel: 1800 220 522

NORTHERN TERRITORYTel: 1800 220 522

SOUTH AUSTRALIATel: 1800 220 522

TASMANIATel: 1800 220 522

VICTORIATel: 03 9815 1266

WESTERN AUSTRALIATel: 1800 220 522

Contact the national office for IBD information, support, advice, membership and IBD Forum details.

The Global Network of IBD Organisations

General Information


ACCA Contact DetailsLevel 1, 462 Burwood RoadHawthorn Vic 3122Tel: 61 3 9815 1266Fax: 61 3 9815 1299Email: [email protected]: www.acca.net.au

Documents

AUTUMN 2007 · ACCA National Magazine Sponsor 2007 ACCA acknowledges the generous contribution of Altana, a Nycomed company, towards the printing of the ACCA National