2644 cca inside insight b...perth symposium cca held its ﬁ rst state symposium in perth, wa, in...

Winter 2009

INS

IDE

Magazine for Crohn’s & Colitis Australia™

NEW RESEARCH

RIDING LIFESUPS & DOWNSPAGES 12 - 13

TOUR DE FORCE

Can stem cells help healing?See page 7

Crusader ready to rideSee page 11

Contents4 - 5 CCA NEWS

6 FELLOWSHIP ANNOUNCED

8 - 9 INFLAMMATION EXPLAINED

11 CROHN’S CRUSADER

12 - 13 PERSONAL STORY

14 WORKING WITH IBD

16 - 17 CONTRIBUTIONS

18 - 19 STRESS AND THE GUT

20 YOUR RIGHTS

21 ASK OUR EXPERTS

22 STUDY LISTINGS

23 GENERAL INFORMATION

INSIDE INSIGHT

EDITOR Alison McClelland

CONTRIBUTORS Dr Paul Pavli Eric Harrison

Shalene Werth Linda Cuneo

Rosa Issa Jo Cook

Tracy Margieson

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 2009.

Welcome CEO’s

FINDING a cure for IBD is the number one wish for anyone living with a diagnosis of Crohn’s disease or ulcerative colitis.

But fi nding that elusive cure takes years of committed research and serious funding in order to maintain the standard of work required. Crohn’s & Colitis Australia™ is well aware of this need and for this reason has ambitiously embarked on its $1 million research fund appeal. By now, our members would have received their second call for donations specifi cally for this appeal and you would have read that we have started to put the money towards a major new research grant. I am very proud to announce that thanks to your donations, CCA has established a major two-year fellowship in honour of Angela McAvoy, the founder and long-term Managing Director of CCA (formerly ACCA).

The Angela McAvoy AM Fellowship is aimed at attracting clinical researchers across a number of fi elds that will lead to a greater

understanding of the disease, and potentially a cure. CCA has committed $150,000 over two years to this major grant but will need your help to keep the research fellowship going. If you haven’t already donated to this important appeal, please consider making a donation today and help us come closer to fi nding a cure.

While we wait for a cure to be found, CCA continues its important work of providing support and increasing awareness to make life more liveable for the many thousands who live with IBD. As everyone feels the affects of the global recession, questions of job security and stability are cause for concern for most people. For those who live with a chronic illness such as IBD, it’s an issue that never goes away. For this reason, our 2009 Awareness Week campaign is themed “Working with IBD”. During the week, CCA will be launching two new guides focusing on employment issues for people living with IBD, and like everyone else, trying to make living to support themselves and their family.

The guides are for employees and for their employers so that everyone understands the issues and myths are dispelled, allowing for better working environments and happier, more productive employees. Each member will receive a copy of the employer and employee guides during awareness week. There will also be a major competition launched during the week, which we trust will give hope to the many who thought that their career options were limited because of their illness. You will be hearing more of the competition in the coming weeks.

On a fi nal note, enclosed with this magazine is your annual invitation to renew your membership. I hope that you have seen the benefi ts of being a member and will again show your support for the vital work that we do at CCA by renewing your membership for 09/010. Remember, the larger our member base, the louder our voice! It is only through a united effort that together we make a difference.

Warm regards,

Francesca Manglaviti

page 2 | Inside Insight Inside Insight I page 3www.crohnsandcolitis.com.auwww.crohnsandcolitis.com.au

AWARENESS NEWSCCA would like to thank all of our members who completed our online survey focusing on the impact of IBD in the workplace. The responses are being collated and the results will be used to promote our National Crohn’s & Colitis Awareness Week, June 21-28, the theme of which is Working with IBD.

Taking the time to complete our survey provides CCA with statistical information with which to lobby governments and employers on your behalf.

It also enables us to raise awareness about IBD in the wider community by highlighting work-related issues in various media outlets.

CCA will also be launching a guide for employees living with IBD, and another for employers, outlining the legal rights and obligations of each party. The booklets address issues such as managing sick leave, discrimination and duty of disclosure.

CCA chief executive Francesca Manglaviti said the booklets were an important step in providing more certainty to both employers and employees with regards to dealing with chronic illnesses in the workplace.

Awareness week will also see the launch of an exciting national competition called Live The Dream. Competition details and entry requirements will be revealed during awareness week.

Of course awareness week is always a good opportunity for our members to arrange their own events or activities to increase awareness in their workplace and community, and even raise funds. Some ideas include arranging for a story about IBD to appear in your workplace magazine/intranet, hosting a morning/afternoon tea with information leafl ets on hand to promote awareness, or asking your local Rotary, Lions or Probus club to invite an IBD specialist to speak at their next meeting.

CCA can provide advice and supporting materials to help you organise your event. Phone 1800 138 029.

PERTH SYMPOSIUMCCA held its fi rst state symposium in Perth, WA, in March. The symposium was held at Sir Charles Gairdner Hospital, with 11 speakers appearing throughout the day. About 200 people heard from researcher and gastroenterologist, Professor Ian Lawrance, dieticians Sarah Leighton and Linda Cuneo, who offered excellent, practical advice regarding nutrition and diet, and psychotherapist Christine Cohen, who provided an overview of relationships and IBD.

The afternoon was divided into two sessions. During the fi rst stream, Perth Meditation Centre director Eric Harrison proved extremely popular, examining the relationship

between stress and physical health (see page 18). Colorectal surgeon Nigel Barwood offered an insightful explanation of bowel resections, specialist nurse Jil Philpott answered frequently asked questions, and Jane Filmer shared her personal story about living with Crohn’s disease (page 10).

The second stream consisted of topics previously not canvassed in our IBD forums. Centrelink offi cer Nicole Della discussed superannuation, while Rose Issa, from Employment Directions Network, offered advice regarding career transition and job searching. In light of our awareness week theme, Working with IBD, Rose’s presentation was an excellent addition to the programme, and is explored further on page 14.

Finally, Rebecca Tedder, from Sussex Street Community Law Service, discussed disability discrimination in the workplace.

CCA would like to thank all the speakers who volunteered their time to appear at the symposium. We received a great deal of positive feedback from the day, and look forward to holding similar programs in NSW and Victoria. Details page 5.

SCIENTIFIC SYMPOSIUMTHE sixth National Infl ammatory Bowel Disease Symposium was held in March at St Vincent’s Hospital, Melbourne. The biennial symposium started in 1996 and remains the only clinical meeting purely devoted to IBD in Australia.

The invited faculty of speakers included notable overseas, interstate and local IBD experts, who discussed state-of-the-art management issues in Crohn’s disease and ulcerative colitis. The 180 attendees from Victoria and interstate included gastroenterologists, colorectal surgeons, paediatricians, IBD trainees, IBD nurses and dieticians.

The principal international guest lecturer was Professor Pia Munkholm, a renowned gastroenterological epidemiologist from Copenghagen, Denmark, who spoke about biological treatment in IBD, cancer surveillance in colitis, and fertility and sexual consequences after ileoanal pouch surgery for ulcerative colitis.

New Zealand’s Dr Richard Gearry discussed management of diffi cult Crohn’s disease, while Prof Michael Kamm, from St Vincent’s Hospital, updated the audience on measures to reduce recurrence of Crohn’s disease after intestinal surgery, and outlined current medical strategies for dealing with severe ulcerative colitis.

The fi rst session of the day dealt with treatment options for severe Crohn’s disease starting in childhood. The talks included an overview of adolescent Crohn’s disease, surgical issues, and medical options for severe perianal Crohn’s disease.

The second session involved various presentations about new drug options for severe Crohn’s disease, including international fi ndings.

Cancer surveillance in ulcerative colitis was also discussed, including new endoscopic techniques to predict and treat cancer in colitis, and the role of surgery in this

condition. Professor Kamm provided guidelines that may possibly be used to reduce the risk of cancer occurring in colitis.

The concluding session of the day dealt with management of severe ulcerative colitis, including surgical options, and the consequences of this operation on quality of life.

(Information provided by Dr William Connell).

FORUMS/SYMPOSIUMSAdelaide forumCCA, in conjunction with Royal Adelaide Hospital’s gastroenterology department, is holding an educational forum on Monday, June 15, focusing on understanding Crohn’s disease and ulcerative colitis and looking at new ways to manage living with a diagnosis.

Topics to be covered over the evening include daily dosing of medications, screening with immunosuppression, surgical issues, and endoscopy and its role in assessing and managing IBD.

Gastroenterologists speaking include Associate Professor Chris Rayner, Dr Matthew Lawrence, Dr Mark Schoeman and Dr David Hetzl. IBD nurse Rachel Grafton will also be speaking.

The forum is free and will be held from 6-8pm at Robson Lecture Theatre, Level 1, Eleanor Harrald Building, Royal Adelaide Hospital, North Terrace. Bookings are essential. Phone 1800 138 029. Coffee and tea will be available from 5:30pm.

Brisbane forumWORKING with IBD is theme of CCA’s Brisbane forum, to be held during awareness week, on Tuesday, June 23. Details are included in the QLD News liftout, or phone our QLD offi ce on 1800 071 072.

NSW SymposiumCCA would like to invite NSW members, their families and friends, to attend the CCA NSW State Symposium on Saturday, July 4.

Speakers and topics will be announced on our website when confi rmed.

People should arrive at 9.30am for a 10am start. The programming will conclude at 4pm.

The symposium will be held at Auditorium, Kerry Packer Education Centre, Level Four, Building 72, Royal Prince Alfred Hospital, Missenden Road, Camperdown.

A basic lunch will be provided by CCA, however, if you have any special dietary requirements, we recommend that you organise your own meals and snacks

Please phone 1800 138 029 to reserve your place before Friday, June 26. Bookings are essential for catering purposes, and seating is strictly limited.

VICTORIAN SYMPOSIUMCCA is holding a Victorian symposium for members, their families and friends, on Saturday, July 25.

Speakers and topics are yet to be fi nalized. Details will be included on our website when confi rmed.

People attending should arrive at 9.30am for a 10am start. The programming will conclude at 4pm.

The symposium will be held at Charles La Trobe Lecture Theatre, Royal Melbourne Hospital, City Campus, Grattan Street, Parkville.

A basic lunch will be provided by CCA, however, if you have any special dietary requirements, we recommend that you organise your own meals and snacks

Phone 1800 138 029 to reserve your place before Friday, July 17. Bookings are essential for catering purposes, and seating is strictly limited.

NSW and VIC symposiums, and the Adelaide

Forum are sponsored by Schering Plough.

News News

Working with IBD

A guide for employees living with

Crohn’s disease or ulcerative colitising wwwiwitthth IIBD

or emplployoyeyeeeess liviving with

ease oorr uululccererativive colitis

Working with IBDA Guide for Employers

Supporting employees living withCrohn’s disease or ulcerative colitis


Inside Insight I page 7

IF YOU are reading this story, it is thanks to Angela McAvoy AM.

For those CCA members who don’t know, Angela was the driving force behind the formation of the Australian Crohn’s and Colitis Association (now known as Crohn’s & Colitis Australia™).

After being diagnosed with Crohn’s disease in 1979, Angela discovered there was no where to turn for more information about the disease, and no support network for people living with IBD.

“It was my surgeon who dropped the fact that there were other organisations overseas. My ears pricked up and I wrote to the American organisation… and I got them to send me one of their pamphlets,” she said.

In 1985 Angela placed an advertisement for an IBD information evening in her local Melbourne newspaper and was overwhelmed by the response.

“We had to change the venue twice to accommodate everyone who wanted to come,” she said.

“And I was inundated with calls from people who couldn’t make it but wanted information or to attend another time. And that was just the eastern suburbs.”

Angela then gathered together like-minded people to form a committee, which developed a constitution for a not-for-profi t

charity aimed at supporting people living with IBD and their families, as well as encouraging research into developing new treatments, and fi nding a cause and cure.

During her 21 years as the managing director, Angela was instrumental in expanding the association interstate, establishing support groups and an information advice line, and networking with the medical community to produce education materials and promote research.

In recognition of her pioneering work, CCA has established the Angela McAvoy AM Fellowship, to foster clinical research into IBD in Australia.

The $150,000 two-year research fellowship is available to Australian citizens with a higher research degree (eg. PhD, MD) who have shown ability to successful carry out clinical research, and outline a research proposal that applies to clinical aspects of patients with IBD.

Preference will be given to proposals that comply with CCA’s priority areas, including early diagnosis, prevention, day-to-day interaction and well being, complementary therapies, epidemiology, and capacity building. (An application form is available by contacting CCA on 1800 138 029).

CCA chairman Bruce Tobin said: “Our members are extremely grateful for Angela’s devoted service to raising awareness about

Crohn’s and colitis and her tireless efforts over many years in raising funds to help fi nd a cure for these two debilitating conditions.

“Naming of this award in honour of Angela goes some way towards recognising her passion and tireless support in helping people living with Crohn’s and colitis.”

CCA chief executive Francesca Manglaviti said the “signifi cant” $75,000-a-year research grant would attract in a high level of applicants.

“Attracting leading researchers in this specialist fi eld is essential to developing better treatments for IBD, and hopefully one day, a cure. CCA hopes this fellowship will help achieve these aims,” she said.

Angela said she was “humbled” when told of the fellowship.

“It would be wonderful if we could just turn the key and the lock opened, but (cures) don’t happen like that. Hopefully this will bring about really good projects that lead someone somewhere that will lead somewhere else… And wouldn’t it be great to see an Australian fi nd the cure?”

Fellowship honours help healing?CCA FOUNDER

Research

Can stem cells

SCIENTISTS at The University of Nottingham are investigating whether stem cell markers could have a role to play in speeding up wound healing in patients suffering from infl ammatory bowel disease (IBD).

The study could eventually lead to the development of new drugs that use natural molecules to spark the recovery of patients with ulcerative colitis and Crohn’s disease, reducing their risk of associated complications such as scarring, bowel obstructions and tumour growth.

Funded with a £118,500 ($236,220) grant from the National Association for Colitis and Crohn’s Disease (NACC), the two-year project is being led by Professor Mohammad Ilyas in the University’s Division of Pathology.

Professor Ilyas said the study would focus on the molecule CD24, a stem cell marker that “plays a key role in cell proliferation and the migration of healthy cells to a damaged area to restore normal tissue.”

“CD24 is a small molecule attached to the cell membrane which has been recently reported as a marker of stem cells in the colon. It occurred to us that CD24 might have a role to play in IBD and during further studies we found that it was indeed present in sections of diseased bowel,” he said.

“The power of the gut to heal the damage caused by acute episodes of infl ammation is remarkable and frequently the gut lining reverts to normal. Anti-infl ammatory drugs help this process along and allow the wound healing to begin earlier than it would naturally.”

“In the future, it may be possible to use a variety of therapies (possibly including gene therapy) to manipulate the expression of the CD24 molecules on cells to promote even more rapid healing. This may mean less scarring, bowel obstruction and fi stulation and less chance of developing tumours resulting from persistent

infl ammation. As a result of this, it may also reduce the chance of needing surgery further down the line.”

In the early stages of the project, the pathologists will be using cell lines in the lab to study CD24 at a cellular and molecular level to discover the mechanisms by which it operates and encourages cell migration and other associated molecules that are co-expressed.

They will then examine diseased IBD tissue to establish whether what they have observed in the lab is occurring in reality.

It is hoped the fi ndings will lead to further clinical work to look at the possible benefi ts of CD24 in allowing IBD patients to more effectively manage their disease.

This article has been adapted from material provided by the University of Nottingham.

Research


INFLAMMATIONInfl ammation is the way the human body responds to an infection. If a germ breaks through the body’s physical defences, say for example a cut in the skin, it generally stimulates “an infl ammatory response”. Sentry cells detect the germ and produce signals that go through the tissues into blood vessels and to the bone marrow. The bone marrow responds by sending infl ammatory (white) cells that pass through the circulation until they pick up signals in the blood vessels near the infection. These white cells migrate out of the blood vessels into the infected tissues. What we see is redness, swelling and warmth (from the increased blood fl ow and the release of lots of different factors); what we feel is pain and stiffness (or loss of function).

When the white cells arrive in the infected tissues, they are primed and ready for action: in fact they have a “shoot on sight” approach. Any contact with a germ results in the cells releasing a whole host of proteins, including antibodies and other substances selected to kill bacteria. Other substances are produced to assist the call for “reinforcements” from the bone marrow and to “prime” them to

produce more, and more effective antibacterial compounds. In the process these cells themselves are damaged, just like a bee after stinging: the result is dead germs and white cells, or “pus”. If the bacteria have developed a resistance to antibodies and other antibacterial substances released into the tissues, white cells called macrophages engulf the germs in an envelope and they are taken up into the cell. This packet merges with another packet in the cell that contains even stronger antibacterial substances, which effectively destroy the germs and eradicate the infection.

HOW DOES THE GUT WORK?Different parts of the gastrointestinal tract have different functions. The oesophagus carries food from the mouth to the stomach. It doesn’t actually change the food in any way, but acts as a passive conduit. The stomach acts as a grinding chamber and storage bag. When the food is ground up it is released into the duodenum where it mixes with the digestive juices from the liver, pancreas and small bowel. These dissolve the food, releasing the sugars, fats, proteins, minerals and vitamins that we need to

survive. (Most people think it is the acid in the stomach that digests the food, but it is really the enzymes from the pancreas and the small bowel, and the bile from the liver).

The small bowel or small intestine is where the nutrition is absorbed into the blood. From there it goes to the liver, which “cleans it up” and processes the nutrients. The blood then passes into the general circulation and provides us with the energy to do what we do.

By the time the food reaches the end of the small bowel, almost all the nutrition has been extracted and all that is left is the indigestible waste (mainly fi bre) in liquid form. The function of the large bowel (or colon) is to salvage whatever salts and water remain behind and to store the solid waste until it can be passed (at a convenient time).

A simple way of looking at the various functions is to compare it to a car: the oesophagus is the petrol pipe; the stomach, the petrol tank; the duodenum is the carburettor; the small bowel, the engine (because that’s what does all the work); and the large bowel is the exhaust pipe (and muffl er).

GERMS AND THE GUTMost of the gastrointestinal tract is relatively free of germs. In fact, very few germs survive the various defence mechanisms that are present from the oesophagus to

the last part of the small bowel. It is only there and in the large bowel that germs are able to survive (and possibly even help maintain normal gut function).

One of the most surprising things about the germs in the gut is that they don’t cause more harm. The same germs in the bladder or the blood cause severe infections, but somehow the immune system of the gut has evolved not to react to those bacteria in the colon and last part of the small bowel, a process called “immune tolerance”. If it hadn’t, the absorption of nutrients would be much less effi cient.

THE GUT AND INFLAMMATIONAn infl amed gut behaves in exactly same way as the infl amed skin: it becomes red, hot, swollen, tender and doesn’t work properly. As infl ammation becomes more severe, ulceration and bleeding develop. The small bowel doesn’t absorb all the nutrition from the food and the large bowel doesn’t absorb salts and water. This results in the symptoms that we associate with infl ammatory bowel disease: feeling lousy, pain, diarrhoea, bleeding, a loss of appetite and a loss of weight.

WHAT CAUSES INFLAMMATORY BOWEL DISEASE?In spite of the research community’s valiant attempts to answer this question, we still don’t know. It is likely that it is either an abnormal response to normal gut bugs (in other words a loss of immune tolerance), or the

presence of an abnormal germ that people with IBD have diffi culty eradicating. The intestinal damage is the result of ongoing infl ammation caused by the germ, which wouldn’t normally cause infl ammation when present in other people.

SO WHAT?Although research has not (yet) answered the big question, it has provided a much greater understanding of how the immune system in the bowel works. Understanding the process of infl ammation has led to the development of drugs that neutralize key factors and allow infl ammation to be controlled. For example, tumour necrosis factor (TNF) is one of the substances that causes recruitment of more white cells and primes them to eradicate germs; but it also causes damage to the intestinal tissues. Drugs that neutralize TNF allow the infl ammatory response to peter out and allow the tissues to heal and get back to normal. Another example of a critical process in infl ammation is the migration of white cells out of blood vessels. This depends on molecules called integrins that function like Velcro: when the blood cells and the blood vessel walls have the right combination of integrins, white cells stick to the blood vessel wall and fi nd their way to the infl amed tissues. If anti-integrins are given, the cells stay in the general circulation, don’t migrate out into the tissues and again the infl ammation peters out. Various anti-integrin molecules are being developed for the treatment of IBD and other infl ammatory conditions such as multiple sclerosis.

These approaches focus on infl ammation in general, to provide therapy that controls the infl ammatory response. Another

approach is to fi nd out what goes wrong in IBD and correct it. The most powerful tool to fi nd out what goes wrong involves genetic studies, which have given us very important clues. For example, we know that the fi rst gene associated with Crohn’s disease, NOD2, is involved in the detection of bacterial products by the body’s white cells. This abnormality was discovered in 2001, and we still don’t know exactly what is going wrong, but we do know that it has something to do with how bacteria turn on (or off) infl ammatory responses.

There are other genes involved in a particular pathway that switches on white cells when they arrive in the intestinal tissues. More genes do other things. In fact, over 30 different genetic changes have been found to be associated with IBD. These fi ndings have resulted from very large studies involving many thousands of IBD patients in large international collaborative studies. The process is incredibly complex but there has been progress is in our understanding of what goes wrong. Even more importantly, there have been advances in developing therapies based on our understanding of what is specifi cally wrong in IBD (as distinct from treating infl ammation in general) and a number of products are being developed to target these specifi c pathways.

THE BOTTOM LINE?Research understanding infl ammation in the gut has allowed us to develop treatment to control infl ammation (whatever the cause) and to help alleviate the symptoms of IBD. Understanding the specifi c causes of IBD will result in even better drugs that will, one day, lead to a cure for IBD.

What exactly is infl ammation? Here Dr Paul Pavli describes the body’s response to an “infl ammatory attack”, and explores developments in drug therapy to treat it.

Research

INFLAMMATIONIN

Research


JANE Filmer is used to talking about Crohn’s disease, just not from the stage of an auditorium fi lled with strangers.

The Perth resident admitted to a few nerves before standing up to speak at the WA symposium about her experiences with the disease, but felt confi dent her story would strike a chord with audience members.

“Because I have undergone the whole gamut of experiences - having surgery, infections, allergic reactions - I just felt I could get up and tell people that you can still get out there and scuba dive with sharks in Tahiti or sky dive over the Blue Mountains or do whatever,’’ she said.

“Because it (IBD) is such an embarrassing thing, people don’t talk about it. But I have had it so long it doesn’t faze me.

“I am so used to talking about it… I thought if I don’t get up there you are not going to get the patient perspective. It is important to hear from the people who have Crohn’s or colitis, who have been through the different experiences, and show that you can go on to live a great life.”

The 33-year-old environmental scientist was diagnosed in 1996, shortly after her brother was diagnosed with the disease.

“It was actually a relief, but also a case of, ‘I’ve got what disease?’

“I’d never heard of it and neither had anyone in my family. Having two of us in the family with the disease and having symptoms occur in the same year was quite a coincidence and a blessing, (because) I wasn’t alone dealing with the disease and learning what it was.”

Four months after her diagnosis, Jane was admitted to hospital to have a section of her small bowel and ileum removed. She remained in good health for fi ve years, until a bout of gastroenteritis caused a fl are up. Several years of experimenting with various steroids and medications followed, with varying degrees of success.

It wasn’t until Jane started using Infl iximab in November 2006 that she felt she was back to near-optimum health.

“Now when I go out I don’t have to go looking for where the public toilet is in case I need it. Now it is more of an afterthought,” she said.

Jane said she hoped her story inspired others to remain positive in the face adversity.

“I tried to focus on remaining positive… I reckon that’s what got me through all my ups and downs. Of course you have you bad days where you stay in bed and say ‘why me?’ But it’s better if you are positive,” she said.

“And I tried to emphasise not hiding it (your condition) and to talk to colleagues about it because if they don’t know they will think you are slack if you come in late because you have been home sick… Talking about it (IBD) helps to normalise it.”

Jane said she also wanted to help fellow sufferers on a more personal level, by training to become a CCA peer support facilitator, organising regular get-togethers for “people who don’t have that support network or just want to talk to people with the same issues”.

Jane’s support group meets from 6.30pm on the fi rst Wednesday of every month at the Playfi eld Learning Centre, Playfi eld St & Fred Bell Pde, East Victoria Park. Contact CCA on 1800 138 029 to book. Please provide details in case of cancellation.

of positive thought

AS YOU read this, Victorian Damian Watson is preparing for the biggest physical challenge of his life - covering 3500km of mountainous terrain on a bike … a push bike!

The 31-year-old South Melbourne man is cycling the 2009 Tour de France route to help fi nd a cure for Crohn’s disease.

Damian, who was diagnosed with Crohn’s disease in 2002, sets off from Monaco on June 4, one month before the start of the Tour de France.

Damian’s Crohn’s Crusader team will follow the Tour’s gruelling 3500km route through Monaco, France, Spain, Andorra, Italy and Switzerland. Damian expects to complete the challenge in time to watch the offi cial race start on July 4.

One of Australia’s top cyclists, Simon Gerrans, a stage winner in last year’s Tour de France, has agreed to be a Crohn’s Crusader patron, and will ride with Damian on his fi rst day.

Damian hopes his “tour” will raise awareness of Crohn’s disease and much-needed funds for research. All funds raised will benefi t Crohn’s & Colitis Australia™ in fi nding a cure for Crohn’s disease.

“You mention Crohn’s to people and no one really knows what it is. But it is a major disease and I think it is worth knowing about and I am in a position to actively do something about raising awareness,” he said.

Damian, a CCA member, became a regular fi xture on Victoria’s Alpine roads in the lead up to the event. However, he admitted the climbs around Falls Creek and Mt Hotham were “minnows” compared with the mountain peaks awaiting him on the other side of the world.

He hopes to complete the 21-stage ride in 25 days, allowing for four rest days. The professionals complete the route in 23 days.

Damian had planned to do the ride last year, but was forced to postpone when he suffered a fl are up.

Managing his health while working full-time, training and co-ordinating the event logistics have almost been as great a challenge as undertaking the ride itself.

“I have found it a bit of a juggling act,” he said. “I am concerned about my health and how it will work out, but I factored in things to make sure I am in the best condition I can possibly be.

“I have never been in control of my Crohn’s – it comes and goes – but it is relatively mild. I have never had surgery and I have only had two fl are ups.”

“I just have this inner confi dence I am in a really good stretch at the moment and a fl are up is a long time away.”

To ensure he is in the best shape possible, Damian has been consulting two dieticians, a chiropractor, and a neurokinesiologist, who helped him to prepare for the psychological aspect of the ride.

He will also be supported by four friends, including his girlfriend, who will ride alongside him. The support crew is a family affair, with Damian’s sister and parents on hand to help out.

“The way I look at it, it’s going to be possibly the toughest thing I have ever done, but probably the most rewarding thing I have ever done,” he said.

“Hopefully, we will get the results along the way by raising awareness and funds, and it will all be worthwhile.”

To support Damian go to the Crohn’s Crusader website www.thecrusaders.com.au, where you can donate directly to CCA and register to receive email updates of his progress during the ride.

Tour de forceCrusader ready to ride

My StoryMy Story

“Hopefully, we will get the results along the way

by raising awareness and funds, and it will all be worthwhile.”

THE POWER


Andrew Crockett has a good life. He lives near beautiful Byron Bay, and when he is not surfi ng, he writes about it for a living. But Andrew has experienced his share of ups and downs since being diagnosed with Crohn’s disease. He hopes his journey to acceptance of his disease will help others living with IBD.

THE sad bit about Crohn’s disease and any of the other severe gastrointestinal diseases, is that the people who really need the help are probably not reading this because they are in denial. They are not looking for help or doing research. They are probably hiding in a dark room somewhere wishing their problem would just go away.

I am 33 years old and have had Crohn’s since I was 18. I have endured more hospital visits, medications, therapists, surgeries and severe complications than I care to talk about. What I hope to outline here are the things I have learned along the way – and the learning curve is very steep.

So, what do they tell you when you get diagnosed? Not much really. Maybe things have changed, but one thing I found missing from the whole process was someone telling me how living with a disease followed similar stages as coping with grief: denial, fear, anger, depression and acceptance.

Once you are diagnosed with Crohn’s disease, you are more than likely put on cortisone and told to

watch your diet. The rest of it is really up to you. No doubt your natural reaction will be to experiment with anything you think might help, including diet, lifestyle changes and alternative medicine. But what happens when they don’t work, and you continue to feel terrible? I know with me, denial set in. I pretended that I didn’t have the disease and just got on with my life as if nothing had happened. None of my friends knew I had the problems I was having. I doubt I am alone in adopting the sort of behaviour where you literally start denying your body, and even abusing it.

When you are in denial the symptoms get worse and this makes you angry. This whole process can last for years and result in you losing your will to get better, and even your will to live. In this state, I was starting to think I would never get better and that I was just going down in fl ames, destined for a short life, and I was OK with that… but it wasn’t true.

The symptoms got so bad that it was life and death, in as much as I had lost my will to live. Without me knowing it, my blood pressure was slowly dropping, and that could

have been the end. Fortunately, I realised that it was up to me to get better and to change the way I viewed the disease, so I could change my thinking and get back to a naturally positive mindset that I maintain to this day.

The fi rst step was realising I was in denial. The second step was having gratitude and giving thanks for what I had in my life that was excellent: my family, my lifestyle, my friends, a brain that worked OK, and a passion to do creative things.

Gratitude is a big part of the healing process. It is all about saying thank you. But when your life is crap and Crohn’s has taken over, what have you got to be thankful about? This is the challenge: to see it, acknowledge it and bring more blessings into your life.

Once you have done these things mentally and changed the way you view the disease, then it is a matter of doing what you can with your body. Learn to love your tummy, ironically the very thing that is causing you the pain. By “love your tummy” I mean giving it attention, spending time with it, massaging it, breathing into it and generally learning to love your body again. I know I hated mine for years, but what good is that going to do? I would do whatever I could not to look at myself in a mirror and not put any effort into helping my body, and that had to change.

Breathing really helped with that, and I mean yogic breathing. If you look at your tummy, when you breathe in your belly should move out, but many people breathe in and their shoulders move up. Once you have mastered the art of the inward breath, you can direct it into your abdomen with precision and it is like an internal massage for you organs. It feels great. If you do work on this, it might be quite painful to start with, especially if you haven’t been focusing on your breath at all.

Diet won’t cure Crohn’s, but it sure can help, both in times of extreme fl are ups, and also in times of apparent good health. It is pretty simple to do the right thing and prepare your own meals if you are listening to your body and intuition. If you are in denial you are more likely to not care what you are eating and probably put no time at all into preparing your own food. If you are tuning into your body, I am sure you will lean towards lots of fresh fruit and vegetables. If you are a meat eater, then eat it, but remember it is much more diffi cult to digest, and you might get just as much nutrition from a bowl of steamed vegetables, or a smoothie.

Changing my main meal of the day from 7pm to lunch time helped me a lot. I am lucky I can do this as I work from home. Most days I have a smoothie for breakfast, or some fresh fruit, then steamed vegetables and some meat for lunch, and something light for dinner, such

as beans on toast or a sandwich. I drink oat milk, rice milk, and eat lots of pumpkin, broccoli and potatoes. I also eat lots of nuts, dates and dried fruit, and while I am not gluten intolerant, I avoid it where I can. I fi nd high fi bre excellent, and if I cannot get enough fi bre I drink a glass of water with psyllium husks in it. For some reason coffee with milk in it messes me up, but long black coffee doesn’t.

If you are in a fl are up, then hopefully you have worked out the benefi ts of smoothies and protein powders. Nuts and seeds are great in smoothies too. And water is essential for people with Crohn’s. I have found fasting is also a wonderful tool. Try it for a day or two and just drink water. It will make you feel a bit rough while your body breaks down the toxins, but then you will feel a high and realise why pretty much everyone used to fast in the old days, sometimes for 30 days in a row!

Learn where the toilets are in your local area. Accept you have the problem, but be highly prepared so that it doesn’t cause you more stress if you get caught out. Have a loo roll in your car/handbag, just in case and try and avoid situations where you can’t go whenever you need to.

Look at other things in your life, especially things that annoy you. Whatever it is, get rid of it and replace it with something else.

For me it was the need for isolation and solitude, peace and quiet. It was only when I found that environment that I was able to feel more comfortable and start the healing process.

Other things that helped me were true love, sunshine, the ocean, job security, my own place to live, infl iximab, laughter, yoga, relaxation music and quiet.

I hope this helped one person and I send my heartfelt gratitude to anyone helping people who live with an illness.

If you have a story to share, or you know a member who does, write to us or email [email protected].

TO GOOD HEALTH

“Gratitude is a big partof the healing process.

It is all about sayingthank you.”

My Story My Story


MY JOURNEY

DOES ANYONE ELSE FEEL THIS WAY, OR IS IT JUST ME? MANY people with chronic illness have asked this question at some time since their diagnosis. Why do people at work treat me differently once they know I have an illness? Something strange is going on at work. I just got passed over for a promotion I was sure was mine. The experience of changing attitudes of colleagues or supervisors to an employee when they reveal that they have been diagnosed with a chronic illness is not limited to rare situations. Research is showing increasingly that this experience is more common than you would imagine.

Employees who choose to work once they have been diagnosed with chronic illness, consider this a straight forward decision. Why indeed, should they be expected to do otherwise? The literature on this topic talks about passing, covering and disclosure. Passing is where a person deliberately chooses not to reveal a diagnosis, while covering involves hiding symptoms, which can be much harder to do. Disclosure is where, by choice or circumstance, an individual reveals their illness. There are risks associated with disclosure and these almost entirely revolve around how colleagues, friends and family react to the news.

Other people’s beliefs about how those with an illness should behave, what work they are capable of, when they should be at work and when they should stay home, become a part of coping with illness while working. Yet these perceptions rarely appear to be based in reality – certainly not the broader reality in which individuals with chronic illness fi nd themselves.

Flexibility at work is often all that is required, as well as an understanding boss, for an individual to continue working effectively. Arrangements which allow time for medical appointments do not just benefi t the employee, employers also stand to benefi t. Their ability to retain a valued employee promotes effi ciency, saves the cost of replacing a staff member and builds a culture of value in the workplace, which will encourage the type of citizenship that some employers can only dream about. The value of individuals at work isn’t in their ability to conform, it is more likely to be found in their creativity, knowledge and belief in what they do – curiously none of these are infl uenced by chronic illness.

Further research is needed to get a better picture of the various infl uences on individuals with chronic illness at work. Women with chronic illness have their own

specifi c circumstances to deal with, particularly because they are often juggling caring and working roles. I am currently developing a list of women who may be willing to be interviewed later for a research project investigating the workplace experiences of women who have a chronic illness or responsibility for children with a chronic illness. If you are interested in being added to this list, please contact me on [email protected] or 07 4631 2401.

Shalene Werth is a PhD student at Griffi th University. She has Crohn’s disease.

LOOKING for a new job, being made redundant, or simply considering a new direction – most of us will go through one or all of these stages at different times in our lives. For many though, underlying concerns such as health related issues can affect our ability to maintain positive attitude in the face of these work-related challenges. Regardless of what stage you are in, help is at hand.

For someone with a health related issue, part of the discovery process is that you become aware of what you can and can’t do. Your ability to negotiate with managers regarding work-life balance will in turn create a more balanced working relationship.

Taking one step at a time toward a career-development plan can be both invigorating and clarifying, in that during the process you learn a lot about yourself from the inside out. This process also encourages you to become your own career manager, enabling you to develop the skills necessary to take control of and responsibility for your vocational/career and work-life plans.

Taking stock of where you have been in your career or studies, and where you want to go in the future, is the impetus that gives you the strength to change and move toward your true calling or next job.

A career development practitioner can help you navigate these changes and processes.

One model used to assist in the career plan is to become aware of your present career environment and turn it into a potential of new opportunities and possibilities. Exploring is the next step. Where to from here? What am I seeking? How do I prepare for a new direction? This step takes time and sensitive planning, as your present and future are being unfolded. Planning is the next stage – putting in place an effective action plan that forces you to take action. There is no point in having a vision or goal if there is no plan of action on how to achieve it.

And perhaps it’s been a while since you reviewed your personality, abilities and attitudes toward life and career. As we mature, our career, desires and interests can change along the way. Doing the career assessment with the career practitioner or coach can open up new ideas about a different vocation that you hadn’t even thought possible!

One other important factor in developing a career plan is networking. Don’t underestimate the power this has to assist in career transitions. Proactively contacting people will assist you with fi nding

vacancies, or generating leads that you may not have been aware of. Word of mouth is one of the strongest selling points for a product, and in this case, the product is YOU.

Action planning, researching, goal setting, information gathering, informational interviewing, work experience, upskilling, setting short and long-term goals, career journaling, updating your resume, refl ecting, studying and volunteering are all steps that will assist you in planning your next move in this journey called life. Enjoy the ride and good luck.

Rose Issa is a career development practitioner with Employment Directions Network, Anglicare WA.

Phone 13 6464 for this free service.

www.anglicarewa.org.auwww.employmentdirections.net.au

Working with IBD Working with IBD

ONE STEPat a time

WORKINGwith an illness


Donations

FundraisingNewsBUSINESS GROWS WINGSTHE butterfl y is an apt symbol for Amber Yates’ new business.

The Melbourne woman’s hobby of making butterfl y cut-outs has morphed into a fully-fl edged business that creates “windswept and interesting artworks” to adorn walls and stationery.

Amber’s career change from events management to self-employed businesswoman has helped her to manage her “active” Crohn’s disease by tailoring her work hours around her health.

“(My) stress levels are low and even when I’m house/couch-bound I can still cut out butterfl ies or sketch out new ideas,” she said.

The Crohn’s & Colitis Australia™ member said her passion for her work and its creative aspect also helped her to temporarily forget about her condition.

The new business has also enabled her to combat the disease on a fi nancial level, with Amber directing 5 per cent of her sales to CCA to maintain our support programs and help raise awareness.

Amber

“Part of my dream for this business is to pass on awareness to people who know someone with this kind of disease, to show them that we need empathy and understanding, not pity or misconceptions,” she said.

“For those who deal with this every single day of their lives with no reprieve, I want them to know that they don’t have to be embarrassed

or feel like they are the only ones – focus on what you can do and not on what you can’t.”

Since the business started six months ago, Amber has been kept busy with personalised orders and restocking the shops she supplies. She also sells her wares at local arts and crafts markets.

Her colourful butterfl y shapes will also be on show next month in a special window display in the SIDS and kids’ Melbourne offi ce.

Amber, who was diagnosed with Crohn’s when she was 12 years old, said she felt a special affi nity with butterfl ies, collecting specimen trays of the insects in her childhood.

Her work has since expanded to include cocktail umbrellas, sea urchins, miniature kimonos and dragonfl ies.

To support Amber and CCA, go to www.loveaj.com.au where you can view the full range, stockists and contact details.

RUN FOR YOUR LIFE PULL on your runners or click on your mouse to change the lives of people living with Crohn’s disease and ulcerative colitis.

Run Melbourne is open to everyone, and we are encouraging members, and their friends and families to register for the fun run, and accept donations through Everyday Hero (www.everydayhero.com.au). All money raised goes to CCA’s support programs and research fund. Anyone can enter, and by asking your family, friends and colleagues for support, you can raise money and earn great rewards.

Run Melbourne is on Sunday, June 28. Participants can select a 5km, 10km or half marathon challenge. CCA has partnered with Glow Fitness Online (www.glowwomensfi tnessonline.com.au), which has created two programs

for CCA’s Run Melbourne Changing Lives Challenge, usually valued at $250 each. Every participant will receive one of these programs FREE, as well as ongoing fi tness and fundraising tips leading up to the race. As soon as you register, CCA will send you an introductory pack, asking you to select your level of fi tness to receive either the 5km Beginner Training Program, or the 5km Improver Training Program.

Our registered members and supporters have already raised $2825, and would love to have some more support.

To enter, go to:www.runmelbourne.com.au and set up your fundraising page through partner site Everyday Hero, choosing Crohn’s & Colitis Australia as your benefi ciary charity (by searching “colitis”).

As our way of saying thank you for all your hard work, CCA is offering rewards when you raise from as little as $250. Prizes include Adidas Essentials gym bags, Gold Class Village Cinema vouchers, new-release DVD packs, Apple Ipod Nanos (8GB), TomTom One 3.5” GPS, Wii Console and Games, and 32” LCD TVs. For further

information, download the fl yer on the homepage at:www.crohnsandcolitis.com.au or phone 1800 138 029.

If you are unable to participate on the day but would like to support our runners, you can make an online donation by going to the Everyday Hero website and searching for the following names: Susan Considine, Mende Cvetkovski, Stephanie O’Collins, Robert Lombardi, Team Slow Coach, Rhiannon Heim, Carolyn Vasilas, Kristy Lam, Nicola Wachter, Mark Patterson, Kristy Morre, Nicola Wachter, Katrina Smith, Rebecca Clarke and Jennifer Assetta.

CCA is developing similar programs for the City 2 Surf and Bridge to Brisbane. Members will receive alerts when it is time to register for the fun run in their state.

RAISE SOME DOUGH WITH KRISPY KREME DONUTSKRISPY Kreme donuts offers a fundraising program that works much like a lamington drive. This program has recently been utilised by CCA community fundraisers with great success. To fi nd out more, go to www.krispykreme.com.au/fundraising/how/ and contact CCA for a letter to support your fundraising activity.

CCA member Jenny O’Regan used the donut fundraising program to help raise $1011.35, which she generously donated to CCA. Jenny, who has Crohn’s disease, also held a sausage sizzle at her workplace and at her church, and asked guests at her 50th birthday party to donate to her chosen charity rather than bring gifts.

“I just thought it was a good thing to do,” she said. “And I was really excited when I saw how much I raised.”

General Donations $1000 - $3000Martin Casella $1000

General Donations $200 - $499Jillian Stewart $200Anne Wheaton $400

Research Appeal Donations $1000 - $3000Stuart Mackie $1000

Research Appeal Donations $201 - $499Paul Pavli $200George Masri $200Catherine Margieson $200Isabella Pinizzotto $200Zara Kahn $200George Capaldo $200Janet Stead & Associates $200Edward Howard $200Christiane Jobst-Baumann $200Michael Humphrey $200Judy Fenton $200Nancy Lindsay $200Fran Lamerton $200Linda Gatfi eld $200Janice King $250Nathan Eddy $350

Community FundraisingValerie Higinbotham $200 - David Williams Tribute ConcertMargarat Lucas $200 - In Memory of Tim BellottiThe Dougherty Entertainer $250 - David Williams Tribute ConcertAdam Spencer Enterprises P/L $250 - David Williams Tribute Concert

Action Australia $1300 - David Williams Tribute ConcertSteadfast Group Ltd $3000 - David Williams Tribute Concert

In MemoryElizabeth Coote $348.00

In Lieu of GiftsGideon & Kerri Gunn $1159.00(see story below)

BIRTHDAY BONUSTURNING 40 is considered a milestone moment, but the event held even more signifi cance for husband and wife team Kerri and Gideon Gunn.

The Melbourne couple decided to celebrate their birthdays with a party at their Malvern East home in April. In leiu of presents, guests were asked to donate to one of three charities, including CCA.

Kerri said the couple was eager to support CCA, as Gideon has Crohn’s disease and underwent a major operation 18 months ago.

“Particularly since the surgery, we both felt the search for a cure was important,” Kerri said.

“We thought rather than getting stuff we don’t need, we would do this instead.”

The couple donated $1159 to CCA.

“We just wanted our friends to have a good time and this is a nice way to give something back,” she said. “It was a really fun night and we were very happy with how it all went.”

Kerri and Gideon Gunn

$1 MILLION RESEARCH APPEAL THANK you to all those people who have donated to our $1 million research appeal. Your generous contributions have so far pushed our total to $81,855. Already this has enabled CCA to establish the two-year $150,000 Angela McAvoy AM Fellowship (details page 6). CCA hopes to offer the fellowship on an annual basis. To do this, CCA requires ongoing fi nancial assistance from members. Remember, just $200 from every member (individual donation or combined from family and friends) would enable us achieve our $1 million target, and take us closer to fi nding better treatments, and hopefully, a cure. Of course, any amount is always greatly appreciated, and we again thank everyone for their valued contributions.

Contributions Contributions


I HAVE found that people readily assume that stress is unhealthy, yet hardly anyone can explain how. In this article, I’ll explain how stress affects the body with particular reference to digestion.

Stress research started with the American physiologist Walter Cannon a century ago. In that era, the germ theory of disease was dominant. This argues that one germ causes one illness, and if you kill the germ the body is healthy again. Cannon however, believed there was also another mechanism at work.

Cannon proposed the theory of “homeostasis”, which refers to the body’s remarkable ability to maintain inner balance regardless of changing circumstances. In fact, our bodies have many complex self-regulatory systems that maintain ideal set-point levels of blood sugar, acidity, oxygen, hormones, nutrients, heart rate, muscle tone, temperature and so on.

Cannon proposed that if any of these systems start to fail, we fall ill. Stress, by exacerbating these imbalances can bring on an illness, or actually cause one, or make the recovery from illness more diffi cult. We can therefore defi ne a stressor as anything that upsets homeostasis, and stress as the body’s adaptive response to restore balance.

Of prime importance is the Autonomic Nervous System (ANS), which determines our levels of arousal and relaxation.

The “fi ght or fl ight” response of the ANS winds us up and the “relaxation response” winds us down. In particular, the ANS governs the rate at which we burn energy - glucose - according to need.

Cannon’s successor, Hans Selye, worked with laboratory rats. He discovered that any number of different stressors could kill them, and in much the same way. They had enlarged adrenal glands, shrunken immune systems and bleeding gastric ulcers.

From this, Selye argued that the body responds to any stress in three stages. The fi rst is the alarm stage, governed by adrenaline. The second is when the body adjusts to chronic on-going stress by producing high levels of cortisol. The third is exhaustion, when homeostasis fails because of the long term side effects of high cortisol.

The stress response is designed to increase the rate at which we burn energy. If a zebra is attacked by a lion, its brain will initiate a fl ood of adrenaline throughout its body. This dilates blood vessels to the heart, lungs and leg muscles, supplying more glucose, so it can run faster.

Since the body can’t perform all bodily functions at once, the zebra shuts down digestion and immunity by constricting the arteries to those systems. This frees up an extra 20-25 per cent of blood for the purpose of fi ght or fl ight. The adrenaline rush comes and goes rapidly, which explains why zebras don’t get ulcers.

Stress only becomes a health risk when low-level, chronic, on-going stress sets in, and cortisol takes over. The purpose of cortisol is to make extra quantities of glucose available in the blood-stream for the troubles that you expect to come. It is anticipatory fear.

In a fi ght or fl ight response, the processes of digestion and immunity are effectively switched off. A zebra in full fl ight is not digesting any food in those moments. Adrenaline shuts down the factories.

In chronic stress, the factories start up again, but with reduced capacity. Cortisol will limit their supplies of the raw materials (glucose, proteins and fats) they need to work effi ciently. Because the body is still maintaining a low-level stress reaction, digestion and immunity won’t get the resources they need to function optimally. In the gut, this disturbs the rhythm of gut motility (peristalsis), contributing to both constipation and diarrhea.

Cortisol is a sugar junky, since this is the fuel that adrenaline wants. High glucose makes the blood sticky and raises blood pressure. This increases the likelihood of platelets forming, and therefore, one’s vulnerability to heart attacks and strokes. Cortisol also counteracts the effect of insulin, which leads down the path to diabetes.

All the cells in our bodies need to extract proteins, fats and glucose from the blood-stream for building, repair and self-regulation.

Unfortunately, cortisol commandeers exactly those proteins and fats that the body needs to maintain homeostasis, and breaks them down into glucose. This has drastic effects on the body’s ability to repair and regulate itself.

The cells that line the stomach and the small intestine survive only for three to fi ve days and need to be continually renewed from stem cells. Since cortisol starves the stem cells of resources, the production of new cells suffers. The body can’t maintain the health of the stomach and intestinal linings.

At the molecular level, the body maintains homeostasis largely through the action of enzymes. These powerful proteins massively accelerate chemical processes, and life couldn’t exist without them.

Cortisol however, steals the proteins necessary for their synthesis. This means that the pancreas and the bile can’t produce adequate amounts of the digestive enzymes that break down food.

Cortisol is equally damaging to immune function. B and T-cells are very short-lived and need to be regenerated in huge numbers daily. Since cortisol is antagonistic to protein synthesis, one of the most obvious effects of stress is a person’s susceptibility to common infections such as the fl u.

Let me summarise the effects of prolonged stress on the digestive system. The blood supply is diminished, providing less fuel for its operation. Gut motility is weaker, contributing to poor digestion and constipation. The regeneration

of epithelial cells in the lining is inhibited. The cells that buffer the stomach against acid are less effective, leading to ulcers. The supply and quality of digestive enzymes will suffer. The immune function will suffer. All this can make us feel rather miserable, which is yet another effect of chronic stress.

So what can you do about it? The body only repairs itself when we are asleep or feeling relaxed. Every time we relax, we tilt the balance back towards homeostasis. I suggest relax a little, many times a day, to gradually reset your habitual level of arousal.

There are many ways to trigger off the relaxation response:Sigh and yawn, noisily and often; breathe out and completely stop between one activity and another; walk down the corridor focusing on fl ow and ease of movement; and learn how to meditate in all circumstances.

Above all, give relaxation the importance it deserves. It is the essential mechanism for restoring inner balance and health.

Eric Harrison

Director of Perth Meditation Centre

www.perthmeditationcentre.com.au

A gut feelingMeditation

Wellbeing


Wellbeing

YOUR EMPLOYER? Generally you don’t have to tell your employer about your disability unless it’s an occupational health and safety risk. This is also the case if you are applying for a new job.

Your employer can’t force you to see their doctor or to sign authorities to get reports from your doctors. Although, there are some exceptions such as for Worker’s Compensation claims.

However, telling your employer might be a positive move. It may help explain any problems you have doing your job and might result in changes to your work which could mean you can continue to work productively.

It’s important to consider what your employer’s reaction will be and maybe get the help of your doctor, union or your relevant disability association.

If you have been discriminated against as a result of the disclosing of your disability to your employer, you have rights under the Equal Opportunity Act 1995 and the Federal Disability Discrimination Act 1992.

THE ROAD TRAFFIC AUTHORITY?You may have to notify the Road Traffi c Authority in your state of a disability in some circumstances. Most Road Traffi c Authorities require you to tell them about a disability if it is likely to affect your ability to drive, as soon as practical.

It is important to note that your driving licence could be affected if you disclose your disability.

Depending on the recommendation of your doctor, your licence could be suspended, cancelled or amended to include a condition requiring you to carry a medical certifi cate if you are driving. If your doctor thinks that your condition may affect your ability to drive, your doctor may be obliged by law to notify the Road Traffi c Authority in your state.

Also, if a member of the public, a friend or family is concerned with your ability to drive, they may also be able to notify the Road Traffi c Authority in your state. If this occurs, the relevant Authority may investigate your medical condition to check your ability to drive.

If you’re not sure of your position you should speak with your doctor.

INSURANCE COMPANIES?Some, but not all, insurance policies require you to tell the insurer if you have a disability before you take out the policy.

Life insurance, income protection insurance and disability insurance policies usually require you to fi ll in a health questionnaire and if you don’t tell them about your disability they might try to cancel your policy and not pay you if they fi nd out when you claim.

However, you don’t always have to tell them if your disability is under control and you can often challenge decisions of insurance companies.

It might also be possible to get disability and death insurance cover without any health questions

such as under “group insurance” schemes e.g. with your employment super, employer income protection insurance or credit union. If you start a job, join a superannuation fund or an organisation that offers insurance, check to see whether you get automatic insurance cover without any health questions.

YOUR SUPERANNUATION FUND?Most employment superannuation funds include disability and death insurance benefi ts without having to fi ll in any health questionnaires up to a certain monetary limit. If you want to get insurance cover over the limit, you will have to fi ll in a health questionnaire and you will most likely have to tell them about your disability.

You can usually get lump sum cover for death and total and permanent disability and maybe also monthly income protection payments under superannuation funds even if you have a disability. If you have to stop work because of your disability and you have the insurance cover attached to your superannuation, you may then be able to make a claim.

The terms and conditions vary from one superannuation fund to another so it is important to check what you are covered for and whether you have to tell the superannuation fund or their insurance company about your disability.

Information provided by Maurice Blackburn Lawyers. Contact 1800 810 812.

DisabilityAsk Our Experts

A. DURING fl are-ups of ulcerative colitis or Crohn’s disease it is not uncommon for people to feel weak and experience rapid weight loss. The feeling of weakness may be due to poor dietary intake, anaemia or dehydration. If you are not eating well, try small frequent snacks rather than large meals. Choose nourishing foods such as lean meat, chicken or fi sh (include oily fi sh such as salmon), eggs, nuts and seeds, avocado, oils such as olive or canola oils, and dairy products (or lactose-free varieties if required) such as milk, cheese, yoghurt, ice cream or custard. Instead of drinking water, tea, coffee, juice or other non-nutritious fl uids, try making milkshakes, smoothies or all-milk coffees or malted milk (using lactose-free milk if required), as this

way you will get fl uid and nutrition in one go. Commercial nutritional supplement drinks, such as Sustagen or Ensure Plus, are also available from chemists.

Anaemia may occur due to blood loss, poor nutrient intake in the diet and/or poor nutrient absorption by the body. Your GP can do a blood test to determine if you are anaemic, investigate likely causes and advise on the best approach to treatment. Dehydration may occur when you have diarrhoea, so it is imperative to drink plenty of fl uids (ie. more than eight cups a day). Small, regular sips are suggested, rather then large volumes of fl uid all at once. If the diarrhoea is severe and ongoing, gastrolyte is recommended to

replace the fl uids and electrolytes lost in the bowel motions. Gastrolyte is available from most pharmacies.

If you are experiencing prolonged fl are-ups with diarrhoea and/or extended periods of not eating a well-balanced diet, I recommend a multivitamin and mineral supplement. If you are anaemic and the cause is related to a vitamin or mineral defi ciency, your GP may also recommend iron, folate or vitamin B12 supplementation in addition to this.

For more advice, see a dietitian who can assess your diet and provide more specifi c recommendations relating to your situation.

Linda CuneoDietitianFremantle Hospital

Q. MY daughter suffers from ulcerative colitis. When she has an attack causing long periods of diarrhoea, she rapidly becomes week and looses weight. I was wondering if you could advise me whether there was a specifi c supplement I should give her to help her maintain her energy when feeling unwell?

Q. MY 40-year-old husband has colitis. He has been very sick lately and does not seem to be getting any better. He has his own business and he is under a lot of pressure to work long hours at the moment. As a result he is tired and irritable, which affects the whole family. Can you give me any suggestions on how meditation might help him?

A. MEDITATION can be very helpful for IBD. As you may well know, a stressful incident can easily cause an outbreak of symptoms. Of more importance however, is the kind of prolonged, low-level stress governed by cortisol that we often regard as normal. This reduces blood fl ow to the gut, reducing motility and so contributing to constipation and diarrhea. Cortisol also inhibits the processes of cell regeneration in the gut lining, inhibits the production of digestive enzymes, and upsets

blood sugar levels. Basically, the gut doesn’t work well for anyone in even moderate stress.

Meditation helps by reducing one’s “normal” level of arousal. If you recognise that you are stressing, it is quite easy to reduce that level by up to 30 per cent within a minute. This doesn’t relax you completely, but it reduces the peaks of tension and makes you more balanced in general during the day. Simple techniques, such as deliberately sighing three times, can be enormously powerful, if done frequently.

This and other techniques can easily be done while walking from one place to another, or any time you are alone. These have an immediate effect, but they work so much better if done 10 or 20 times a day. They reset the baseline level of arousal and cortisol, so you become more relaxed in general. Of course, it is also useful to learn to meditate more thoroughly than this.

Eric HarrisonDirector Perth Meditation Centre

Your rights Your rights

DisclosureA common question that arises when someone is diagnosed with a disability is “Who do I have to tell?”


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.

GOLIMUMABT17 - INDUCTION THERAPY A Phase 2/3 Multicentre, randomised, placebo-controlled, double-blind study to evaluate the safety and effi cacy of golimumab induction therapy, administered subcutaneously, in subjects with moderately to severely active ulcerative colitis.

PURPOSEThe purpose of this trial is to determine if treatment with an experimental drug (golimumab) that is subcutaneously (under the skin) administered can safely and effectively reduce the signs and symptoms of active ulcerative colitis (such as diarrhoea and rectal bleeding) better than treatment with placebo. A placebo is an inactive or

dummy treatment that looks the same as the study drug but does not contain any active medication. Golimumab is not licensed for use in ulcerative colitis.

CONTACTIf you are interested in participating in this study and would like more information about the study design, eligibility and criteria, please refer to the Crohn’s & Colitis Australia™ (CCA) website:www.crohnsandcolitis.com.au. For details about which investigating site is nearest to you contact CCA on 1800 138 029 or email [email protected]. New investigating sites will be added once approved and listed on the CCA website.

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

TEL: 61 3 9815 1266

FAX: 61 3 9815 1299

EMAIL: [email protected]

WEBSITE: www.crohnsandcolitis.com.au

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

GENERAL INFORMATION

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.

StudyListings

THE research team from the Department of Medicine, Monash University (Box Hill Hospital Campus) is studying a new dietary approach for treating people with Crohn’s disease.

We are seeking participants who have well controlled Crohn’s disease, are 18 years or older and not have taken antibiotics within the last two months.

The study, funded by the National Health and Medical Research Council of Australia, will involve consuming two different diets for three weeks each (all food will be provided), collecting breath, faecal and urine samples, and completing bowel symptom and food diaries.

To fi nd out more information about this dietary study email Dr Jane Muir at [email protected] or phone 9895 0369. All information is kept strictly confi dential.

NEW DIETARY APPROACH FORTREATING GASTROINTESTINAL SYMPTOMS ASSOCIATED WITH CROHN’S DISEASE

COULD YOU BE A SUPPORT GROUP FACILITATOR?Crohn’s & Colitis Australia™ is in the process of developing our SupportGroup Service throughout Australia. To provide this service we needvolunteers to make a difference in the lives of others.

We are looking for CCA members that are able to make an ongoing commitment of their time, who have the following qualities:

• A people person

• A good listener

• Organised

• Punctual

• Flexible

• Proactive

• Able to facilitate discussion and be assertive when required

• Able to empathise with others

• Provide ongoing feedback and communication to the Support Services Co-ordinator

• A willingness to support CCA and adhere to our policies and procedures

• Attend training when required

If you believe that you have these qualities and are able to make a regular, ongoing commitment, please contact CCA on 1800 138 029 or email [email protected] and our Support Services Co-ordinator will contact you to discuss further.

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 92400. NSW Community Benefi t Number is 93238. QLD 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

Shop at Ritchies Raise Money for CCA


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

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

2644 cca inside insight b...perth symposium cca held its ﬁ rst state symposium in perth, wa, in...

Documents