Magazine for Crohn’s & Colitis Australia Eating out

Spring 2010

On the runSisters slog it outSee pages 10-11

IBD nurSeSResearch resultsSee page 14

Magazine for Crohn’s & Colitis Australia™

with iBDPage 22

Eating out

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

ContEnts4-5 CCa newS

6-11 My StoRy

12-13 FundRaISIng

14-20 ReSeaRCh

21 aSk ouR exPeRtS

22 eatIng out

InSIDe InSIGht

eDItOr alison McClelland

COntrIButOrS associate Professor Jane andrews

dr Lani Prideaux

Christine gass

gabrielle oliphant

Belinda headon

MISSIOn StAteMent

CCa’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 services.

InSIDe InSIGht SPOnSOr

Crohn’s & Colitis australia™ acknowledges the generous contribution of orphan towards the development and printing of the CCa national Magazine. Inside Insight is published by Crohn’s & Colitis australia™ (CCa), Copyright 2010.

Members who are unwell we send our thoughts and best wishes to members who are ill at present, or who are recovering from surgery. we wish you a very speedy recovery.

www.crohnsandcolitis.com.au Inside Insight | Page 3

the CCa community is extensive. 21,000 people have at one time or another registered as members of CCa, over 34,000 have at-tended a forum, approximately 91,000 people have either called our office or emailed looking for someone to talk to that under-stands and won’t judge, 41,400 people have attended a support group, and in the last three years, 220 people have attended a youth camp. over our 25 year history hundreds of volunteers have given thousands of hours – too many to count – to help run forums, give talks, run support groups and camps, run our offic-es, mail our magazines and letters and help us raise funds so that we can continue to offer services and fund research. and of course, the CCa community could not exist without the generous donors and the corporate sponsors that have supported our cause throughout the years.

By now, all our members and supporters will have received an invitation for the Silver Lining Ball in celebration of our 25 year anni-versary. the event is in recognition

of the many that have made IBd education and support programs possible, and the many who have received the benefits of these services. But as we recognise the past, we also look towards the fu-ture for greater awareness of IBd through young advocates and ambassadors, and for a cure that will make IBd history.

the September 11 ball aims to raise $100,000 to go towards research and youth programs. It is in these two areas that we believe the most impact can be made. It goes without saying that by supporting research, we get closer to better understanding and eventually curing IBd. By sup-porting young people living with Crohn’s and colitis, we are able to give them the confidence and self esteem needed to speak out against misconceptions surround-ing bowel diseases and potential-ly change social attitudes forever.

If you would like to participate in what promises to be a fun night you can still purchase tickets online. If you are unable to at-tend but would like to support the

event, you can make a dona-tion through our website. Before signing off I would like to thank orphan australia who have part-nered with CCa to make the Silver Lining Ball reality. we are grateful for their continued support.

warm regards,

Francesca Manglaviti

CEo’swElComEIN the last issue of the Inside Insight magazine, I wrote about communities coming together to make a difference. In this issue I want to talk about our own community – the members, friends and supporters of Crohn’s & Colitis Australia who over the last 25 years have made a difference to the lives of so many people.


news

SIlver lInInG BAlltICketS are still available for CCa’s Silver Lining Ball fundraiser, to be held at Peninsula, Central Pier, docklands, from 7pm.

the black-tie event promises to be an evening of glamour and fun, with comedian John Blackman emceeing the night, and cover band deja Vu providing musical entertainment. a special guest appearance by The Apprentice winner andrew Morello will also have everyone digging deep into their pockets during the live auction of all our wonderful prizes, including restaurant packages, jewellery, sporting memorabilia, and a private dinner cooked by an eminent chef, as well as other exclusive items.

guests can also bid on a wide selection of silent auction goods, ranging from accommodation packages to one-off works of art.

tickets are available individually for $195, or as tables of 10. CCa has secured discount rates for ball guests at a number of leading Melbourne hotels. Please contact us for rates and further information.

to book a ticket, or for more information, go to www.crohnsandcolitis.com.au

and click on the Silver Lining Ball link.

we look forward to seeing you on the night.

PhOne COunSellInG ServICea new phone counselling service is available for people who have undergone, or are about to undergo, surgery to have an ileostomy.

Support oostomates needs group (Song) was started by gold Coast hospital stoma nurse Sheryl waye, who ran a similar group in Brisbane.

the service operates daily and is staffed by a group of trained volunteers, many of whom have IBd and are ostomates themselves. the counsellors offer practical advice and emotional support and understanding.

Professional counsellor and Song volunteer nichola hamilton said having been through the surgery she well understood the need for such a service.

“Song is touching lives in times of need,” she said. “this surgery is not a walk in the park and support is required.”

the service is available daily from 8am-8pm. Phone 0429 126 163.

tOIletS At yOur FInGertIP iPhone users who have IBd can now download a handy app that lists nearby toilet facilities wherever they are in australia.

the free national Public toilet Map app shows the location of more than 14,000 public and private public toilet facilities across australia.

useful information is provided about each toilet, including the location of the five nearest public toilets, opening hours, availability of baby change rooms, accessibility for people with disabilities and the details of other nearby toilets.

It is also convenient for people with young families and those holidaying or travelling to unfamiliar destinations.

the toilet locator app is available from your phone’s app Store or from www.apple.com/au/itunes. you will need to download itunes if you don’t already have it.

the national Public toilet Map is funded by the australian government department of health and ageing.

CCa nEws

MaJoR PaRtneR


news

nZ jOInS the IBD FOlD CRohn’S & Colitis new Zealand Charitable Trust (CCNZ) was officially launched by the associate Minister of health, tariana turia, at Parlia-ment in wellington in July.

More than 100 people attended the ceremony, including representatives of the health sector, politicians, IBd patients and their families.

new Zealand has one of the highest incidences of IBd in the world, with 15,000 patients diagnosed. Prior to the establishment of a national body, patients were served by individual support groups.

at the launch, Minister turia unveiled an art-a-loo decorated by Massey university art students. the design they chose reflected a conversation with an IBd patient. the art-a-loo was painted in black, with the words “shame” and “fear” and the letter “X” displayed on it, reflecting the pain the patient felt with having the disease. three other art-a-loos were displayed around the city for several days after the launch, and were later auctioned, with the proceeds going to CCnZ.

a national website, www.crohnsandcolitis.org.nz is currently being designed and will be operational later this year.

the Board of CCnZ has 10 members, including specialists and patients, and an executive office will be appointed in the new year.

CCnZ chairman Brian Poole said the organisation was grateful for the support of Crohn’s & Colitis australia, and in particular Ceo Francesca Manglaviti.

“we also thank the Board of CCa for the use of its branding, which reflects how unified we all are in addressing the impact of this insidious disease,” Mr Poole said.

new reSeArCh weBSItethe IBd Research group at the Queensland Institute of Medical Research (QIMR) has launched a new-look website to highlight a large study of Crohn’s and colitis being undertaken in Brisbane.

the study, established by associate Professor graham Radford-Smith at the Royal Brisbane and women’s hospital, is looking at genetic and environmental factors linked to IBd. It also aims to determine how common the conditions are in the south-east Queensland community. the website is directed at patients, friends and family, as well as health professionals interested in novel Queensland research into these conditions.

the researchers are examining a series of genetic and other risk factors, including aspects of medical history, diet, living environment and infection.

the Brisbane IBd Research group has been undertaking studies of IBd for several years. Previous participants are encouraged to make contact with the study co-ordinators to update their details. Visitors to the website will find information about current projects and published outcomes of the research to date.

to see the site, go to www.ibd.qimr.edu.au

CCA AGM CCa’s annual general Meeting will be held from 11am on Saturday november 13 at Box hill hospital. details of the location are yet to be confirmed, but will be posted on the CCa website as soon as confirmation is received. the meeting is open to all CCa members. a forum will begin immediately after the meeting (see below).

FOruM DAteSan information forum will be held at Flinders Medical Centre, adelaide, on november 8. the time is yet to be confirmed. Check our website for details closer to the date. dr Peter Bampton will be one of the key speakers.

an information forum will be held at Box hill hospital on november 13, immediately following the agM. the forum will be held in the same room as the agM. Check the website for details closer to the date.

the dates of forums at Concord hospital in Sydney and John hunter Children’s hospital in new Lambton, Newcastle, are yet to be confirmed. details will be posted on our website when confirmed.

associate Minister for health tariana turia with CCnZ chairman Brian Poole.


My Story

the surgeon came in and sat on the end of the bed in the recovery ward. he had a smile on his face – that was a good sign. “I know what it is – it’s Crohn’s disease. I’ve seen it in your ileum.” I think that he also said that mine was a mild form – but I was still drugged out from the anaesthetic, and so I think I missed the “mild” bit.

Surprisingly, I was quite pleased with this diagnosis – the alternative was life threatening.

this was the end of a long journey over a few years, but it was also the beginning of a new journey, which, at this time, I was not sure where it would lead.

I am John Flaherty, and I am a Minister in the uniting Church in australia (uCa). I am a Patrol Minister with Frontier Services, an agency of the uCa.

I live with my wife, elizabeth warschauer, (also a uCa Minister) in the centre of australia, in tennant Creek. tennant Creek has no airline service and so the “big smoke” is alice Springs (500km to the south) or darwin (about 1000km to the north). the town has a population of about 3500, 60 per cent of whom are indigenous.

elizabeth is the uC minister (part time) in the town, and I am the Patrol Minister in the tennant Barkly area. My patch covers about 300,000 sq km. I travel about 40,000 km a year.

We first lived and worked in the Northern Territory as teachers from 1972 to 1984. we returned to the north-ern territory as ministers in 2006.

Back to my Crohn’s.

I had been having trouble with my bowel over the past few years, but nothing serious until about two years ago when I had to be flown to Alice Springs from Ten-nant Creek (courtesy of RFdS) with a blocked bowel. this appeared to right itself, but I had a colonoscopy and endoscopy to check things out. I was clean at the top end and clean at the bottom end, but there was still something not quite right. this was followed up with a few specialist appointments.

on december 30, 2009, after driving from adelaide to alice Springs, I once again ended up in the alice Springs hospital with what appeared to be another blocked bowel. a couple of nights in hospital – when we should have been celebrating our 40th wedding anniversary!

there was talk of tumours and so another round of colonoscopies and endoscopies to again check things out. (Isn’t the preparation for these yuck?) once again, I was clean at the top end and clean at the bottom end.

So it was home again to tennant Creek for a few weeks to think about the next step - a laparoscopy. all this time I was feeling unwell and being VeRy careful about what I ate – only soft stuff – mush! I did consume quite a few ginger tablets during this time as well.

each trip to see the specialist or have a procedure is a 1000km-round trip from tennant Creek to alice Springs and one or two night’s accommodation.

So, I was eventually diagnosed with Crohn’s, which is not cancer and so is not life threatening, but I soon came to learn that there are certain foods you don’t dare put in your mouth when you are in a flare-up.

I also learnt that there are certain medications you can take to manage the Crohn’s.

The first week after the diagnosis was a bit un-nerving. the medication had not yet kicked in, I was on a diet of mush, I was getting advice from several sources (some helpful, some unhelpful). I joined CCa and was very pleased with the helpline – someone at the other end of the phone knew what I was talking about.

I am some months down the track now and the meds have kicked in. I am eating an almost normal diet, I have seen a dietitian, and I am feeling much better in myself. I am still awaiting to see a gastroenterologist to talk about long-term management.

the support of my wife elizabeth and my family has been crucial in me getting back on track.

Given John Flaherty’s “office” is the size of a small European country, his recent IBD diagnosis has presented some logistical issues.

thE top EnD to thE Bottom EnD

John Flaherty with wife elizabeth.


My Story

I WAS diagnosed with Crohn’s disease in my first year of university. It came as a shock to suddenly get so sick. Sure, I’d grown up thin, with bouts of vomiting for no reason, but overall I was a healthy, athletic country girl. I’d never heard of anything called an inflammatory bowel disease before. It had a terrifyingly permanent sound to it – “disease”.

over a period of time I was feeling “off” in the stomach. I would get strange pains when I’d eat and when I didn’t. then came the internal bleeding and the dramatic weight loss. I lost 13kg in about three or four weeks.

I was bleeding internally, unable to eat and if I did manage food, I would lie in bed for hours afterwards feeling nauseous and frightened.

I quit my university course and went home and the investigations began. as did the trials of different medications and the periods of steroids to calm the inflammation when all else failed. It sounds so reasonable and clinical here, but it was not like that at the time. there were all the stages of grief as I tried to come to terms with the frightening idea that my body harboured a disease. Sometimes I thought I’d never get past the anger phase of grief!

throughout the 15 years I have had Crohn’s, it’s been a rollercoaster. I fought every inch of the way not to give up exactly how I wanted to run my life, only to find that my body had other ideas and I needed to concede in many ways to my reduced energy and vitality. this came as a painful shock and I kept my Crohn’s a secret from most people, as I was ashamed of my body. It had let me down. It had given in and was now “malfunctioning” and I wanted to disown it. the only way I could do that was not to talk about it at all.

this silence was something I hung on to for many years. then one day, I started to get better. I researched all kinds of complementary therapies and meditated and attended things like tai chi and yoga classes. I went to chiropractors who believe in the power of the body to heal itself. alongside the most amazing gastroenterologist, who planned every step of my medication with me, I have been able to toss away the steroids – hopefully for good! and I started to talk about my condition with others, to gain their perspective and to add my voice to their ideas.

this was an amazing thing for me. to come out of the “bathroom closet” and let it be known that I had a disease, that I wasn’t just malingering, and in actual fact, I was doing well.

I still find my lack of energy a hard thing to take but I no longer hide the “why” from people I meet. It is a part of me and I only wish I had known the things I do now back when I was diagnosed. I feel it is so important for me to add my story to those already out there; to help take the message of IBd to those who have no idea what it means to suddenly find your body acting like a foreign entity, and to explain to those in my life how this destroyed my self-image, my confidence and my faith in my ability to do anything. I remember I didn’t want to try anything new because I was so afraid I wouldn’t be able to follow through, complete the project and see a final result.

while I have enjoyed a return to some levels of health, I still struggle to balance work with life and have taken leave from my office job in Canberra to pursue training in more flexible work. To do this, I had to end my lease and move to country nSw to afford to live. I enjoy a quieter life here, but I do find the four-hour commute to my specialist, chiropractor, health food store and friends somewhat difficult! However, I can either work full time or live. Currently, I appear not to be able to combine the two. I am hoping that part time or flexible working hours will alleviate this problem.

where I now live, there are no support groups and no voice for those with IBd or IBS. Specialists are usually more than two hours away. any medical treatment in Sydney is an eight-hour drive. It is a quiet and closed environment for those who have daily symptoms and struggle to maintain a healthy work-life balance.

I don’t like the idea of any one suffering in the silence of poor body image and pain and misery, which is why I hope to train as a CCa support team facilitator. Initiating conversation around the issues of Crohn’s and colitis is something I see of immeasurable value. I can’t imagine a better way to also make my own journey feel worthwhile.

every voice counts, everyone’s story.

Mel Ifield refused to give in to her illness, until her body told her otherwise. Here she writes about her relief after her decision to come out of “the bathroom”.

BalanCing aCt


My Story

Patricia Poole felt as if her life were grinding to a halt, until she decided to get her life back on track, literally.

attituDE is EvErything

I waS diagnosed with Crohn’s disease in 1988, aged 22. I underwent surgery to remove the diseased portion of my bowel and in 2002 I had another surgery for the same reason.

I have suffered depression from an early age for various reasons and for me this was exacerbated by having a chronic illness. unlike many Crohn’s patients, I had major weight gain following my last surgery, reaching 103kg. I was a divorced, sole parent living alone in the country and I felt stuck in a rut and was struggling financially.

the turning point for me came when I read a book by paraplegic olympian John Maclean, called Suck-ing the Marrow Out of Life. I was totally inspired by his never-give-up attitude and his philosophy of “only possibilities”. It was an awakening for me that although there were some circumstances in my life beyond my control, I was choosing (unconsciously) to focus on the wrong things.

through further connecting with John, he taught me the importance of goal setting in order to achieve our goals, visions and dreams. I set myself the huge challenge of walking the kokoda track in Papua new guinea as part of a group of 12 women called the kokoda Chicks. Collectively we raised almost $90,000 in our fundraising campaign for the national Breast Cancer Foundation. It was a huge physical challenge for me, but also an awesome experience I will treasure forever.

Following on from that, I set myself a goal of running a half marathon (21.1km), even though I was unable to run for five minutes at a time without stopping. I was fortunate enough to stumble upon Pat Carroll, an online running coach, while surfing the internet.

Pat, being an elite marathoner with more than two decades experience, was able to sensibly and realisti-cally guide me to reach that goal within a four-month period. Being a sedentary person for most of my young life, I surprised myself that a 42-year-old women with a history of chronic illness could achieve such things.

Then, on July 4 this year, I ran my first Gold Coast Airport marathon, 42.2km, which took me a little over five hours. I am not a fast runner and was unsure I could achieve this goal until I crossed the finish line.

this was good training for completing my third consec-utive City2Surf in august, raising funds for CCa for the second year running.

I’ll never be an elite athlete but I do enjoy the feeling of being a relatively fit 44-year-old woman. I have done four half marathons and a few 10km fun runs, and lost 28kg along the way through exercise and healthy eating.

I don’t know what the future holds for me in relation to my Crohn’s disease. Since my last surgery I have been very blessed to have been mostly pain and symptom free. I’m still on medication and I do suffer fatigue but I think the biggest difference for me has been my change in attitude. I now choose to focus on the can-do side of life, and gratitude mixed in with some self belief.

Living with a chronic illness and being uncertain what the future holds can be very daunting. Pain and other symptoms can make social situations and the like seem very daunting. It’s easy to feel isolated and alone. I encourage others to try facing their fears, whatever they may be, and also to set themselves a challenge, knowing that all we need to do to get the ball rolling is take one step at a time.

“I now choose to focus on the can-do side of life, and gratitude mixed in with some self belief.”


My Story

My name is Amy Ruddick and this is a brief personal story about my journey with Crohn’s disease over the last seven years. I hope this inspires further funding of IBD nurses.

nursing amBition to hElp othErs

I waS 14 years old when I was diagnosed with Crohn’s disease. as a young teenager, my life took a turn as I very quickly deteriorated with all the classic symptoms of weight loss, diarrhoea, abdominal pain, cramps and bleeding. My gP assumed I had some form of gastro and sent me home with gastrolyte and told me to take the next day off school. My mum took me to the emergency department after she saw how much blood I was losing. after a week in hospital on IV pred-nisolone, a colonoscopy, two blood transfusions and various other medications, it was the paediatric nurses at my bedside that helped me and my family through the turmoil.

the diagnosis was shocking, relieving and confusing and raised many questions for the whole family. the nurses provided us with the support, education, the listening ear and understanding that we needed at such a fragile time. I now remember my first relapse as a turning point to come to terms with the illness we had never heard of. It was time to get to know how the disease works, how to treat it, and how to accom-modate Crohn’s into our lives, rather than emphasising the pain, suffering and the things that I missed while being unwell.

after various other relapses, when I turned 17, I was too old for the paediatric ward. I was transferred to a general medical ward and no longer had the rapport my mother and I had built with the paediatric nurses. this was hard on mum and me during that time. the nurses were just as lovely and caring, though I know I would have greatly appreciated the option of having a specialist IBd nurse through my whole experience, helping me through my diagnosis, the teenage and adolescence years, and helping mum with home-cooked meals, information on medications, activity tolerance and treatment options. to have an IBd spe-cialist nurse that my mother or I could have contacted, with a greater knowledge base and the expertise we desired, such as ties in the community, would have assisted us through tough times. having the chance to build a rapport with my mother, three sisters, my brother and I, as a family, with a dedicated IBd nurse who knew our personal values would have helped us with ways to accommodate Crohn’s into our lives.

I had already decided I was going to be a nurse before my diagnosis and my battles living with Crohn’s disease further strengthened my passion. I have just turned 21. I am in remission, and have been for the last two and a half years. I am currently completing my last year of university at deakin, and am very excited about start-ing my career as a nurse. with my experience suffering a chronic illness through my teenage years, and the inspiring dedicated, compassionate nurses I have met, I am able to relate to my patients on a different level of understanding, and I strive to provide the same care that I received during my treatment.

I know CCa is supporting a push for government-fund-ed IBd nurses, a cause I fully support. having a nurse to support me through my future employment, travels, decisions about starting a family of my own, and what-ever life brings me, would be much appreciated. I in-tend to complete further research into Crohn’s disease after my degree, aiming to contribute to providing a better quality of life for people living with IBd. with my experience, passion and interest in the field, I may wish to become an IBd nurse specialist one day myself.


A large and loving family has helped Susan Maye endure the lows of IBD. Here, Susan and sister Fionnuala share their experiences of living with IBD.

Family tiEs

By Susan Maye

I gRew up in country nSw, one of seven active children running amok in the countryside and dreaming of trav-eling the world. once I outgrew my hometown I moved to Brisbane to study journalism.

I was 21 when I started getting ongoing bouts of diar-rhea and stomach pains. It took more than 12 months, repeated doctor’s visits, and the loss of 12kg before I was referred to a specialist. His first words after the examination were: “you have severe ulcerative colitis. I have seen people your age die from this.” already extremely sick and scared about the amount of blood I was losing, this was not what I needed to hear. he as-sumed I hadn’t taken my health seriously.

I had planned on travelling the world as a foreign correspondent – getting sick in my final year was not part of this plan and it impacted every area of my life. Although I managed to finish my degree, I wasn’t able to pursue full-time work or postgraduate study. The fi-nancial and emotional stress that came with an unpre-dictable illness and the side effects of the medication took their toll on me. My friends also found it difficult to understand as I often looked well but wasn’t able to maintain my social life.

with my family scattered across the globe and my parents home raising my younger siblings, I relied on my aunt and uncle in Brisbane to “rescue” me from my share house repeatedly over the years, taking me to hospital and nursing me back to health. My parents visited and supported me when they could, but mov-ing home wasn’t an option as I needed to be close to specialist attention.

amidst all the uncertainty, I managed to get on with a semblance of life and got to know where all the toilets in Brisbane were. this didn’t prevent accidents over the years, but I learnt to take them in my stride.

despite treatment, my IBd never went into remission and at age 24, after months of deterioration, I was hos-pitalised again. I don’t recall much from that time. My first clear memory is of waking up in intensive care with an ileostomy and a new diagnosis of indeterminate Crohn’s-colitis. I was surprised to see my brother, who was living in the uS at the time, and my sister from Syd-

ney, not realising they had been told I might only have 24 hours to live – I was too weak to process anything at that point. while it took me no time at all to manage my ileostomy, it took a lot longer to accept it – particu-larly with ongoing complications.

I slowly regained my health and a few years later was medication free and well enough to travel to Singapore, Malaysia and Cambodia. after working in Brisbane for another few years, I moved to London to work. I had a great time over there and backpacked through europe, north africa and the Middle east, managing any complications or “accidents” with a grace and efficiency I couldn’t muster in the early days. I now call Melbourne home.

I’ve had a number of surgeries over the years, including two in the past 18 months for fistulating Crohn’s. It’s likely I will need drug therapy again in a bid to avoid major reconstructive surgery. this disease stole many years and there were times I felt great despair. But it has taught me acceptance and a resilience I didn’t know I had.

none of it has stopped me trekking through Borneo last year, getting my SCuBa license or planning my next ad-venture. despite everything, I’m grateful I am now able to live an active life. I found the loss of my physicality during the illness really difficult.

after my recent surgeries I was looking for a way to take some control back, so I started training for Run Melbourne. on the day, I not only managed to make the distance, but also raised $2500 for CCa. In solidar-ity, my sisters, thomasine and Fionnuala, ran the Sydney City2Surf this year, also fundraising for CCa. My family members are my closest friends. we have been through a lot together.

hearing other’s stories and experiencing the lack of understanding that surrounds IBd – let’s face it, it isn’t standard dinner party conversation – makes raising awareness and educating the public and health professionals really important to me.

My Story

Susan, right, at the Run Melbourne finish line.


By Fionnuala Maye

IF you ask a little girl what she wants to be when she grows up she may tell you she wants to be a journalist, or an air hostess, or a scientist or doctor. when I was a little girl, I wanted to be my big sister Susan. She had beauti-ful, long blonde hair, she was athletic, intelligent, outspo-ken and always surrounded by friends doing fun things.

She moved to Brisbane to study journalism at university. Coming from a large family, there was no way our par-ents could help her financially so she worked full-time hours at kmart while also studying full time. She also managed to continue her outgoing social life. then she started getting sick. upset tummies mostly. tummy bug after tummy bug. or so we thought. after months of vomiting, diarrhoea, weight loss, tests and doctor’s ap-pointments, a specialist diagnosed ulcerative colitis.

while all this was going on in Brisbane, I was carrying on my selfish teenage life in the northern NSW town we all grew up in. I remember mum telling us what the diagnosis was and went and looked in the encyclo-pedia at school to find out what it meant. “An inflam-mation of the bowel” didn’t sound that serious. when Susan came home for Christmas that year looking like a concentration camp survivor, unable to eat anything but potato, rice and a dash of soy milk, the reality of the illness’ seriousness started to hit me.

while coming to terms with her illness and trying to manage it with diet, Susan was still studying journalism and managed to graduate with the university medal for being first in her course. Unfortunately, the medica-tion and managed diet was not successful in combat-ing the disease.

after years of illness, Susan was hospitalised with severe bleeding and dehydration. the doctors carried out an emergency colectomy. I’ll never forget the night our dad, a conservative university lecturer not known for great shows of emotion, arrived home from Brisbane. he put his hand on my shoulder while gazing vacantly off to my left and said: “I think you’d better come to Brisbane this weekend. It might be time to say good-bye to Susan.” Our brother flew back from Philadelphia where he was working, and our oldest sister flew up from Sydney. For the first time since the older kids had started moving away for university, we were all togeth-er again – and it wasn’t for Christmas.

I remember that time as so surreal. after the operation Susan contracted an infection and pneumonia and ended up in a coma in intensive care. She also had a new diagnosis of Crohn’s disease. I had never felt so scared or helpless in my life, but I knew that Susan was

a fighter and I hoped and prayed that she would fight it. And fight it she did, and still continues to do so today.

It’s such a cliché but I am so immensely proud of my big sister. not only has she dealt with her ileostomy and several subsequent surgeries with humour (it’s widely re-ferred to as her “poo bag” in our family) and pride, but she has also got up and got on with life when she has had constant complications thrown at her. She hasn’t let her ileostomy stop her from travelling to places such as Syria and Jordan, she hasn’t let a fistula that won’t heal stop her from completing her PadI diving course and travelling to Borneo to scuba dive and climb the highest mountain in South east asia. and she didn’t let it all stop her from training for and running the Run Melbourne event, raising $2500 for the Crohn’s & Colitis australia Changing Lives Challenge. and all while still being her usual beautiful, sociable, outgoing self.

when I grow up I still want to be just like my big sister Susan.

My Story

I had never felt so scared or helpless in my life, but I knew that Susan was a fighter and I hoped and prayed that she would fight it.

From left: thomasine, Fionnuala and Susan Maye.


Fundraising

FunDraisingChAnGInG lIveS ChAllenGeBy Kate Zantuck

So far this year, 47 individuals have proudly represented CCa as part of its Changing Lives Challenge team. From the amazing fundraising efforts of our team members, we have almost reached our goal of $25,000 for the year! go team!

on Sunday, July 18, 25 runners participated in Run Melbourne. although chilly, the weather was clear and there was a great vibe among the 18,000 people taking part in the event. From this event alone, $11460 was raised!

this year’s City2Surf Sydney took place on august 8. Fifteen runners took part in the 14km race, raising a fantastic $7872.

during the time this issue has gone to print, Bridge to Brisbane and City to Surf Perth will take place. at this stage, we have three runners signed up to take part and they are doing well with their fundraising.

the adelaide City Bay Fun Run will be held on September 19. Currently we have four runners taking part and they have already raised $1700.

Last but not least, the Point to Pinnacle is taking place on november 21 in hobart. Currently we have no team members taking part – come on tassie get involved!

to join the Changing Lives Challenge team for the City Bay Fun Run, Point to Pinnacle or for any other event please contact me at [email protected]

If you’re unable to join the team, you can still be involved and show your support by making a donation through the team page: www.everydayhero.com.au/ccas_changing_lives_challenge_2010

CCa would like to thank all the Changing Lives Challenge team members for all their hard work and also those who have so generously supported them.

FunDrAISer MAKeS A CleAn SweePwhen Melbourne’s Jodie Carroll received CCa’s research appeal letter, she knew she wanted to contribute to find a cure.

“I thought at the time that I couldn’t afford $200, so I thought I would do a fundraiser instead,” Jodie said.

Jodie, who was diagnosed with ulcerative colitis in 1988, decided to hold an enjo party at her Lysterfield home.

Instead of receiving a host gift, Jodie, an enjo representative, asked for 10 per cent of the party proceeds to be donated to CCa, raising almost $200.

“It was great to do, and a good way to raise awareness among people too,” she said. “One day they might find a cure and others might benefit from what I have done.”

OPen GArDen FunDrAISer WITH the warmer weather finally on the way, now is the time to enjoy all the spring blossoms and raise money for CCa at the same time.

abernethy garden in wahroonga will be open to the public for the first time as part of Sydney’s Open garden Scheme.

the north Shore garden belongs to friends of Marita Minns, who is helping to organise the event.

“as part of the scheme a portion of the proceeds are donated to the owners’ charity of choice,” she said. “My friends were looking for a charity to donate to, and as I have a family history with IBd, we decided on CCa’s research program.”

Marita said she was overwhelmed by the number of CCa members who responded to a call for help to staff the event.

“More than 30 members responded and said they would assist,” she said. “the support was tremendous and really blew me away. People were so generous with their time and were prepared to travel for hours. that is amazing.”

the garden is at 57 Braeside St, wahroonga, and will be open 10am-4.30pm on September 11 and 12. Light refreshments will be served.

SwInG IntO ACtIOnthe Rotary Club of dural and dural Round Corner Chamber of Commerce have joined forces to hold their first combined charity golf day.

Rotary president and event organiser Paul wolf said he hoped the event would raise $20,000 for the three benefiting charities, including CCa.

Catrina Camakaris at the Changing Lives ChallengeCatrina Camakaris at the Changing Lives Challenge.


Fundraising

Paul said support for the event had been strong, with 136 players already signing up to compete at Riversdale oaks golf Resort on wednesday, october 13.

Prizes will be awarded throughout the day, which will kick off with a sausage sizzle.

People interested in competing should email [email protected]. Sponsorship packages ($1000 and $250) are still available, as are individual golf and dinner packages ($140).

reSeArCh DOnAtIOnS$1000-2999 I galloway, n Schot, S Robinson, n Roubicek$500- 999 L archer, M McPherson, e Camarri, S Sutton, P Irving, B Boyd, F Macrae$200- 499 C Lehmann, I McBurnie, S dench, e Smith, L & R eckel, g wanes, S Mcgrath, e drakos, J neldner, S uhlenbruch, h humphries, M narielvala, M kasimatis, e Rice, t Vagel, k Mclean, M hunter, n Vavic, M egan, I whiting, J Becher, J Caramia, S Liston, P Virmani, M taylor, S Zelnik, J dalton, R Johnston, P Brame, t Fyffe, P Sheldon, J Ryan, C Romaine, J hastwell, n Morrow, a kingsford-Smith, M harding, R turnbull, P Ingram, M Messinbird, C nicolaou, a Lord, J Scuglia, J Iser, S Rozdarz, n Fitt, I Mcauley, M ellis, h kingston, S Stanta, a dean, M Michel, M watkins, B Billingsly, M Lawless, t Shanahan, F Payne, L Potok, k ahern, J hardeman, J & C alder, P humphreys, a Plint

GenerAl DOnAtIOnS$1000-$2999 R Johnston, M Ismay, C Matthews$500-$999 J Black, M winter, S gluskie, J Foster, e Camarri, Baden J green Services Pty Ltd Chartered accountants Cronulla Sydney, h Boxall, J Leslie, C Mitchell, Rotary Club of Mackay Incorporated, a Burt, J gunn

$200-499 R thompson, M & V klein, M Behling, M Mcguire, M Morcos, a Battilana, P agar, J andrews, R Singleton, t Sabesan, I Jaensch, d Baillie, d Shanahan, ahrens engineering Pty Ltd, S Fox, C hounsell, d Burrow, M hockless, L archer, B Boyd, g Cunningham, S hillebrand-Roellgen, P Maguire, g Moller, M Pittorino, L Szumowski, g taylor, d taylor, M wing

COMMunIty FunDrAISInGRotary Club of Corryong $250Barry Maddock (the Sebel heritage) morning tea $268Blackburn Primary School free-dress day $506.95 R & C Margieson garage sale $330 (for research) Sarah Reynolds sponsorship from local run $150 glenden State School $421Jenni Fairbairn (Cashflow Finance australia Pty Ltd) $500Lions Club of Jervis Bay $200Rebecca Briggs $2895Natasha Roubicek raffle and workplace morning tea $500 (for support groups)

Donations


Research

Do iBD nursEs makE a DiFFErEnCE?

PRIoR to 2007, the Royal adelaide hospital (Rah) did not have a formal IBd service, and yet we were car-ing for a substantial number of patients with Crohn’s and colitis – more than 300 seen annually. as IBd is a chronic condition, we thought that maintaining a high quality of care was a priority. Moreover, to sup-port our request for new funding for an extended roles IBd nurse, we needed to show that our proposed new model achieved a high efficacy and was at least cost-neutral for the hospital. to do this, a group of research-ers examined whether the introduction of a formal IBd Service with an IBd nurse improved outcomes for IBd patients or affected hospital costs.

Before introducing the IBd nurse and starting a formal IBd clinic, we performed a large clinical audit at the Rah (1). this audit was then repeated two years later (2). From these audits, we were able to look at a lot of information on patients with IBd coming to our hospital in two, six-month periods before and after changing the way we delivered IBd-related care. we particularly fo-cused on simple measures, such as hospital admissions, the number of days spent in hospital that could be de-termined from the hospital records, and asking patients to tell us about the drugs they were on and how they felt about their disease. we were then able to use the admission data and bed occupancy days to calculate costs from one period to another, and also to compare medication use between these two audit periods.

From the pre-IBd service period (in 2007), we had data on 162 patients. of this group, 81 responded to the sur-vey again in 2009. the 2009 responders were older than 2009 non-responders (54.4yrs vs 38.2 years), but other-wise the 2009 responders and non-responders were no different from each other (in gender, IBd subtype, disease duration, health-care utilisation or psychologi-cal comorbidity).

In the second survey (2009), many patients had im-proved knowledge, improved medication adherence, greater satisfaction with care, improved quality of life and lower scores for depression and anxiety. Important-ly, only 30 per cent of patients had a hospital admission in the year before the 2009 survey, whereas in the year

before we started the IBd service (2007), 48 per cent of patients had required admission. Consistent with this, patients reported fewer courses of both corticosteroids (prednisolone) and opiates (strong pain killers) in 2009 and fewer medications overall, (average of 5.63 medi-cations per patient in 2007 vs. 4.65 in 2009).

although we only have data on drug use and how patients felt in 2009, if they returned the second survey, we can say that the decrease in need for hospital admission was even greater in the 2009 non-responders (53 per cent admitted in 2007 vs. 21 per cent in 2009), suggesting that this benefit was seen in all patients, not only those who were happy to fill in a second survey.

the introduction of our IBd service with an extended roles IBd nurse has resulted in broad improvements in outcomes for our IBd patient. not only have we shown general trends of improvements in quality of life, medi-cation adherence, patient satisfaction and psychologi-cal status, we have also demonstrated tangible, sig-nificant reductions in proven markers for trouble in IBD, including hospital admissions, polypharmacy (use of multiple drugs), and steroid and opiate use. despite the increased cost of employing an IBd nurse, the marked reduction in occupied bed days makes this highly cost effective, with savings of at least $500,000 per year, estimated on local inpatient cost data (1).

we would like to acknowledge the help and support we have had from all our IBd patients in South aus-tralia who have been great with supporting clinical research in the last few years. we hope to continue to work together to improve your ongoing care and your outcomes, while the clever immunology and genetics doctors continue to work hard in the labs to find a cure!

References available upon request.

Associate Professor Jane Andrews is a gastroenterolo-gist at the Royal Adelaide Hospital.

The study was conducted by Jane Andrews, IBD nurse Rachel Grafton, Dr Daniel van Langenberg, Dr Vin An Pham, Dr David Hetzel and Dr Mark Schoeman.

Associate Professor Jane Andrews decided to find the answer to that exact question. Here she explains the findings of a study to measure the effect of the IBD nurse.


Research

gErm warFarE

dId you know that there is 1000 times the number of bacteria in one person’s gut as there are humans on earth? did you know that 90 per cent of the cells in the body are bacteria in our gut? did you know that bacteria contribute most of the mass of our stool?

our gut is a self-contained ecological environment packed with up to 100 trillion bacteria. only a small proportion of these bacteria have been identified. we are born germ free – the bacteria we have in our gut come from the outside world, that is, from the environment around us. these bacteria in our gut hold the key to understanding the inflammatory conditions of the lining of the gut, ulcerative colitis and Crohn’s disease.

Inflammatory bowel disease in Western countries such as australia is common, whereas in asia it is uncommon but rapidly increasing. the cause of IBd is unknown, but we know it relates to the way our immune system responds to the bacteria in our gut. our genetic makeup also plays a role.

Migration, and the effect it has on gut bacteria, may provide clues to why the children of immigrants from areas where IBd is rare have a higher chance than their parents of developing IBd in their new country. this suggests that exposure to factors in the environment during childhood is key in the development of IBd.

even in stable populations in the west, IBd may relate to altered bacteria in the gut. Little is known about these gut bacteria in asian people, and in particular whether it is changing to western patterns, especially after migration to the west.

Lifestyle factors, such as diet, childhood antibiotic exposure, hygiene habits, smoking and improved medical services, may play a part in causing the rising occurrence of IBd in industrialised countries. these changes are likely to lead to changes in the bacteria that inhabit the gut.

with this in mind, a research study has been set up at St Vincent’s hospital in Melbourne by myself and Professor of gastroenterology Michael kamm. It is called the enIGMA Study (eastern IBd Gut Microbiota).

the enIgMa Study examines the gut bacteria in patients with IBd and healthy people in hong kong, central China and australia.

to assist in this study collaboration has been formed in hong kong with Professor Sung and dr Siew ng at Prince of wales hospital and the Chinese university of hong kong; and in China with Professor Bing xia at Zhongnan hospital in wuhan and Professor Liping Zhao in Shanghai. In australia we are working with the Mur-doch Children’s Research Institute in Melbourne and the Commonwealth Scientific and Industrial Research organisation (CSIRo) in Brisbane.

a total of 180 people are being studied in hong kong, wuhan and australia, including IBd patients and healthy controls. we will document patients and healthy peoples’ diet, and other factors that may af-fect our gut bacteria. we will then study the gut bacte-ria from patients and healthy people.

We expect to discover specific changes in the gut bac-teria that differ between different countries and different ethnic groups. We hope this will allow specific bacteria to be identified that are important in causing Crohn’s disease and ulcerative colitis. this will help to identify the cause of inflammatory bowel disease and unravel one of the largest mysteries in modern gastroenterology.

Dr Lani Prideaux is an IBD PhD Fellow, Department of Gastroenterology, St Vincent’s Hospital, Melbourne.

An international research study led by Melbourne’s Dr Lani Prideaux aims to discover whether population migration patterns could help to determine the cause of IBD.


International Research

what’s nEw in thE worlD oF iBD rEsEarCh?BreASt MIlK helPS AllevIAte DIGeStIve DISOrDerS CanadIan researchers have discovered how a probiotic found in breast milk reduces or eliminates painful cramping in the gut.

In a new research report published in the Federation of American Societies for Experimental Biology (FASEB) Journal, scientists used mice to show that a specific strain of Lactobacillus reuteri decreased the force of muscle contractions in the gut within minutes of exposure. this bacterium naturally occurs in the gut of many mammals and can be found in human breast milk. this discovery suggests that increasing the intake of this bacterium may help alleviate symptoms of a wide range of gut disorders, including inflammatory bowel disease.

Researchers introduced Lactobacillus reuteri into isolated pieces of small intestine taken from healthy and previously untreated mice. the bacterium was added to a warm salt solution flowing through the lumen (hollow part) of the intestine and the pressure caused by natural contractions was measured before, during and after adding the bacterium. Relaxation of smooth muscle tissue was compared with the action of the bacterium. Researchers also tested the electrical activity of single intestinal sensory nerve cells.

wolfgang kunze, a researcher from the McMaster Brain-Body Institute and department of Psychiatry at St. Joseph’s healthcare in ontario, Canada, said the findings showed scientific approach to nutrition

could help to “correct potential bacterial imbalance in the intes-tine and thereby promote better health, and possibly restore health in diseases associated with these imbalances”.

Article sourced from the Federation of American Societies for Experimental Biology

DISCOvery FlAGS POtentIAl new treAtMent FOr uC the chemical that may trigger remission in ulcerative colitis has been discovered by researchers at McMaster university in Canada.

the team from the university’s Farncombe Family digestive health Research Institute has found that people in long-term remission of ulcerative colitis have elevated levels of the same chemical, prostaglandin d2, which they previously found to be important in promoting healing and maintaining remission of the condition in laboratory rats.

“the levels of prostaglandin d2 were only elevated in those patients in long-term remission, and that suggests it is a key factor in preventing new episodes of ulcerative colitis,” said John wallace, director of the Institute and a professor of medicine for the Michael g. degroote School of Medicine.

Professor wallace said the discovery may lead to a new treatment for inflammatory bowel disease, which would promote production of prostaglandin d2, wallace said.

“It is entirely possible our findings could extend to Crohn’s disease as well,” he said.

Article sourced from McMaster University

IBD lInK tO AnIMAl PrOteInFOR the first time, in a large prospective study, researchers have identified an association between high-protein intake


and a significantly increased risk of IBd. while doctors have long suspected that diet contributes to IBd, little has been assessed, and the studies conducted have been retrospective, which are less informative because they rely on the study participants’ ability to recall what they have consumed in the past. this study examined the effects of different sources and amounts of protein.

using participants in France’s e3n cohort study, researchers led by Prevost Jantchou, from the Center for Research in epidemiology and Population, and colleagues identified 77 women aged 40-65 with validated cases of IBd. In each case, the onset of IBd occurred after the first dietary questionnaire was administered, thereby assuring that they could be studied prospectively.

dr Jantchou examined participants’ macronutrient (protein, fat and carbohydrate) intake, and determined that more than two-thirds of them had elevated levels of protein intake. Participants were divided into three groups based on their mean protein intake: the lowest intake group had a mean daily protein intake of 1.08g/kg of body weight; the middle group had

1.52g/kg; and the highest group had 2.07g/kg. the recommended daily intake is about 0.8g of protein per kg of body weight.

when examining the effects of specific types of protein, Jantchou found that animal protein represented a three-fold risk of developing IBd in the highest group compared with the lowest group. Specifically, animal protein from meat and fish, not dairy, created an increased risk, while vegetable protein created no increased risk of developing IBd.

Researchers found that the increased risk from animal protein intake was the same for Crohn’s disease and ulcerative colitis. they also found that smoking and hormonal therapy, two factors known to be related to the risk of IBd, did not change their results.

“Our findings represent a tremendous step forward in our understanding of inflammatory bowel disease,” dr Jantchou said. “For years we’ve known there was a connection between diet and IBD, and we now know specifically which aspect of diet is related to disease occurrence. the next step is to look at the effect of animal protein in patients already diagnosed with IBd to be able to give them better dietary advice.”

Article sourced from www.ddw.org

CAnCer DruG ShOwS PrOMISe FOr treAtInG IBDJaPaneSe scientists have found that a cancer drug could be used to treat people with autoimmune diseases.

In a research report published in July in the Journal of Leukocyte

Biology, scientists used mice to show that bortezomib, currently used to treat cancers that affect white blood cells, induced cell death only in harmful (active and proliferating) t-cells, leaving the rest unharmed. If the results prove true in humans, it offers hope that this drug, or others similar to it, might be used to treat inflammatory diseases without the side effects of current drugs that affect all t-cells equally.

to make this discovery, scientists used two groups of mice – the first treated with bortezomib and the second with saline. Researchers induced contact hypersensitivity reaction with oxazolone, a chemical allergen used for immunological experiments. they found that bortezomib significantly inhibited the contact hypersensitivity responses. Results strongly suggest that bortezomib treatment enhanced t-cell death by inhibiting nF-kappa B activation, which plays a key role in regulating the immune response to infection. this in turn led to the suppression of inflammatory responses in immune cells by reducing interferon-gamma production.

koichi yanaba, a research scientist from the department of dermatology at nagasaki university graduate School of Biomedical Sciences, said: “unfortunately, there are a lot of people who are suffering from autoimmune and inflammatory disease. We believe that this new-type remedy for autoimmune and inflammatory disease could successfully treat them in the near future.”

Article sourced from the Federation of American Societies for Experimental Biology




Colitis sEvErity linkED to agEADULTS diagnosed with ulcerative colitis after the age 50 are more likely to achieve remission from their symptoms than patients diagnosed at younger ages, even when those patients receive similar treatments, according to research at Washington University School of Medicine in St. Louis.

the study, published in the august issue of Clinical Gastroenterology and Hepatology, is the first to look at patients whose colitis was treated with modern medications, from the relatively mild, maintenance drugs known as 5-aminosalicylates (5-aSas) to immu-nosuppressive therapies such as steroids and the drug infliximab, which targets specific proteins in the body’s immune system to help control inflammation.

“at the start of the study, our early- and late-onset patient groups were about equal in terms of the sever-ity of their symptoms,” said lead investigator Matthew Ciorba, an assistant professor of medicine at wash-ington university. “however, after a year of treatment, those who had developed colitis later in life had better outcomes. More of them were in clinical remission at one year, compared to those diagnosed when they were younger.”

the study involved 295 people treated at IBd clinics at the university’s School of Medicine from 2001-08. after treatment, 64 per cent of patients diagnosed after the age of 50 were in remission, compared with 49 per cent of those who developed colitis at younger ages. Pa-tients in remission no longer have clinical symptoms of colitis, but many may still have inflammation and may need to continue treatment with 5-aSa drugs, but are able to discontinue steroids.

Ciorba said those diagnosed early in life were more likely to have family members with IBd and that ge-netic influences may play a larger role in their disease. More than one in five study patients under the age of 30 had a family history of IBd.

“the age at which patients are affected tends to split into two specific waves,” Ciorba said. “In the clinic, we see a number of patients who get the disease from their late teens to their mid 20s. then there’s a second peak of patients who aren’t affected until after the age of 50.”

the researchers suspect that later-onset disease is related to changes in the aging immune system and to environmental influences such as smoking. Nearly 52 per cent in the late-onset group were former smokers, compared with only 13.5 per cent of the younger pa-tients. Smoking is a well-known risk factor for colitis.

“we know from research by other investigators that as people age their immune systems tend to quiet down, and the results from our study may reflect that finding,” Ciorba said. “ulcerative colitis is driven by an over-ac-tive immune response in the gut, so it makes sense that people whose immune systems are less active might have better outcomes. Conversely, younger patients are more likely to have robust inflammatory responses, so their disease is harder to quiet down.”

Both younger and older patients received the same treatments, mainly 5-aSas and steroids. about 63 per cent of early onset patients and 68 per cent of late-on-set patients received either oral or intravenous steroids within the first year of treatment.

“Steroids have long been used as a therapy, but they are a ‘dual-edged sword’ in many cases,” Ciorba said. “they improve symptoms, but we are not sure that they actually promote healing in the colon. the good news is that for many patients, regardless of their age at disease onset, aggressive, early therapy is related to relatively high remission rates.”

he said more research was needed into the environ-mental and genetic factors that differentiate late- ver-sus early- onset disease. that work could help deter-mine whether older or younger patients may respond better to different therapeutic combinations or newer investigative therapies.

Article sourced from Washington University School of Medicine.



plant ExtraCt CoulD Fight iBDA SOUTH Dakota State University scientist’s research shows an extract made from a food plant in the Brassica family was effective in alleviating signs of ulcerative colitis in mice.

the ongoing study by associate Professor Moul dey in the university’s department of health and nutritional Sciences (funded by the national Institutes of health) moves on now to examine the potential use of the plant extract against colon cancer.

“there is an established link between ulcerative colitis and colon cancer. People who have ulcerative colitis are at significantly higher risk to have colon cancer,” dey said. “whether this plant extract might help with colon cancer symptoms directly or perhaps delay the onset of colon cancer in ulcerative colitis patients, we don’t know the answers to those questions, but it is something we would like to look into.”

dey developed a mammalian cell-based screening platform and screened nearly 3000 plant extracts for potential anti-inflammatory activity. A plant-derived compound called Phenethylisothiocyanate, (PeItC), was one that showed potential anti-inflammatory activities.

PeItC is found in the Brassica genus of plants, which in-cludes cabbage, cauliflower, watercress and broccoli. Barbarea verna, also known as upland cress or early wintercress, a herb that is used in salads, soups, and garnishes, is one of the richest sources of dietary PeItC in dey’s study.

Scientists had already studied the compound for its anti-carcinogenic properties prior to dey’s investigation on its anti-inflammatory activities.

“I tested this substance in a mouse model that is al-ready established and widely used,” dey said. “what we found is that it not only alleviates several clinical signs of ulcerative colitis – for example, it attenuates the damage that occurs in the colon tissues and colon epithelium – but also the clinical signs like diarrhoea and blood in stools. the weight loss is a major sign in colitis and that was alleviated, too.”

however, she noted that although mammalian animal models are routinely used for an initial test of biological effects of compounds targeted for potential human use, obtained results may not always repeat in humans.

when dey and her colleagues looked into the mecha-nism by which the compound might be working against IBd, they found that it “down-regulates” many of the genes that are known to be “up-regulated” in human patients with colitis. that means the compound acts on cells to decrease the quantity of cellular com-ponents such as specific proteins that are produced abundantly in colitis patients. one such protein is a novel transcription factor. transcription factors are one of the groups of proteins that read and interpret the genetic blueprint in the dna.

“We are excited about these findings and our next step would be to see how this plant and the compounds from this plant may be effective against colon cancer, alleviating colon cancer or preventing the onset of colon cancer,” dey said.

“I am not a cancer biologist per se. My interests are really in cellular mechanisms of inflammatory diseases. the only reason we are going to study colon cancer in this particular project is because ulcerative colitis is very closely linked to colon cancer.”

Colon carcinogenesis is highly preventable, yet colon cancer has one of the highest death rates among all cancers due to typical late diagnosis.

Since people already eat vegetables containing PeItC, there is a long history of human consumption with no adverse effects.

“Obviously the dose we are testing is significantly higher than what we eat in a vegetable, but we have done multiple safety tests and found that this dose is safe in animals,” dey said.

dey has no plans to test the extract in humans as part of the current project, but said additional tests would be required if the extract leads to new drugs or treat-ments in humans.

Article sourced from South Dakota State University.


Research

sExuality anD iBD The diagnosis of IBD is often made at a time when people are forming important social and intimate relationships. A new study by psychology student Christine Gass aims to measure the impact of IBD on sexuality.

SexuaL health, that is one’s en-joyment of sexual activity, is an important part of our well-being. Anecdotal and scientific research indicates that individuals who have a fulfilling sexual relationship are more likely to report being in a stronger relationship, feel less stressed and are more able to deal with stressors in their life. while several factors may influence one’s sexual health, such as personality, relationship problems, and environ-mental stressors (e.g., work, family), limited research has been undertak-en with individuals who suffer from gastrointestinal conditions such as inflammatory bowel disease.

of the research that has been undertaken with IBd populations, increased IBd activity was associ-ated with decreases in sexual per-formance and intimacy with one’s partner. however, while disease severity frequently predicted these associations, sometimes the rela-tionships between IBd and those factors it influenced were more unexpected and complex. For ex-ample, some research with women showed a tendency to be satis-fied with one’s partner, even when interest in sexual relations was low. Meanwhile, some research with men showed that sexual function-ing was relatively better with longer disease duration, contrasted to shorter disease duration.

Given these findings, further re-search is warranted. with the help of psychologist Simon knowles, I have developed an online-based study to further explore the impact of IBd on sexuality and psycho-logical wellbeing. a further focus of this study will be to explore other factors, such as coping style, which may influence these relationships.

as a busy mother, mature-age student, and someone dealing with my own health concerns (and recent surgery!), I am very aware of the impact of illness on my life and those around me. I hope that my research will help in some way to improve the lives of others.

In order to attain the broadest sample, an online survey was cho-sen (a paper version of the survey is available by contacting dr knowles, see below). An important benefit of the online survey is that it can be completed at a time and location convenient to those wishing to par-ticipate. It also ensures anonymity and privacy.

The findings from this research will be published in Inside Insight at a later

date and will also include recom-mendations (based on the findings) relating to better sexual health.

Invitation: If you have IBD (and are over 18 years of age), we invite you to participate in this research by completing our survey.

to complete the online question-naire, please go to the following uRL http://opinio.online.swin.edu.au/s?s=8081. the total time to com-plete the questionnaire will be 30-45 minutes. to receive a hard copy of the survey contact dr knowles on 03 9214 8206.

Christine Gass is a fourth-year honours psychology student at Swinburne University of Technology, Melbourne.


Research wellbeing

ask our ExpErtsBy IBd nuRSe BeLInda headon

Q: I haVe had Crohn’s disease for about seven years. I have been taking medicines for all this time but my doctor has suggested that I see a surgeon to discuss having surgery. Last Christmas I started getting se-vere pains that would pass an hour or so later. If I have an operation will I need to continue with my medications afterwards?

A: uP to 80 per cent of patients with Crohn’s disease are likely to need surgery at some stage. unfortunately, surgery is not a cure as the disease eventually recurs in most patients.

For patients who have had surgery affecting their small bowel, medica-tions that delay the disease recur-ring are generally recommended.

this is something you need to discuss with your gastroenterologist as the decision is based on many factors, including: your age at diag-nosis; how extensive your disease is; how aggressive your disease is; how well you have responded to your medications; what medication you are taking; and possibly most impor-tantly, whether you smoke.

Patients who continue to smoke are at high risk of early recurrence if they are not able to quit. after a small bowel resection, such high-risk patients are thought to benefit from taking imuran (azathioprine) or 6 Mercaptopurine.

Medication is best started around two weeks after surgery and the duration of treatment should be at least two years in this group of patients.

your doctor may recommend you take an antibiotic called Metro-nidazole (Flagyl) for up to three months after surgery. Studies have

shown that Metronidazole signifi-cantly reduces the incidence of recurrence for up to one year after surgery compared with patients on placebo (no medication).

as of yet, there is little data on post-op infliximab. One study has shown continuing treatment after surgery significantly reduces the chance of recurrence compared with patients taking nothing (placebo) at one year. there is currently no such data on post operative humira (adali-mumab) but this study is currently being conducted in australia.

Q: My daughter has been taking mesalazine to treat her colitis since she was diagnosed two years ago. After having a difficult few months with her disease, her doctor has recently recommended she com-mence a stronger medication. I am concerned about the increased risks associated with the new medi-cation. I know she needs another treatment but I am concerned about putting her at risk of other problems.

A: unFoRtunateLy, all medications come with “some” measurable risk.

your daughter’s gastroenterologist will be carefully weighing up the benefits of her treatment and im-proved health against the potential risk associated with the disease.

Concerns most commonly arise around the use of medications that suppress or “modulate” the immune system such as corticosteroids, imuran (azathioprine), 6 mercato-purine, methotrexate and anti-tnF medications, such as infliximab and humira. as these medications are now common practise in the management of IBd, physicians are focused on both managing the disease and reducing the risks of complications.

Frequently, patients are most concerned with a potential in-creased risk of cancer. But in fact, the greater risk is associated with infections. the important message is therefore to prevent these poten-tially harmful infections and ensure such infections are diagnosed and treated early. Patients on com-bined immunomodulator therapies (i.e. more than one) or who are malnourished are considered at higher risk of infection.

Many centres will ensure that pa-tients are screened for infections such as hepatitis, tuberculosis and varicella zoster virus (associated with chicken pox/shingles), and ensure that relevant vaccinations are all up to date. Regular gynae-cological screening for cervical cancer is strongly recommended for women with IBd. Routine hPV (human papilloma virus) vaccina-tion is recommended according to state guidelines, as is routine annual influenza vaccinations.

not all infections can be vaccinat-ed against. It is therefore important not to put oneself at unnecessary risk, such as travelling to tB-infected countries or socialising with people who are sick.

For patients educated in the im-portance of appropriate infection screening and adequate vaccina-tion programs, the risk of complica-tions from such medication should be minimised by the benefit of effective treatments and remission of the disease.


Eating out with iBDFood is always a consideration for people living with IBD. But what happens when you are invited out for dinner, or have to attend a school camp or a work conference? Here, dietitian Gabrielle Oliphant explains how you can have your cake and eat it too.

LIFe should not have to stop if you are suffering from an inflammatory bowel disease such as Crohn’s disease of ulcerative colitis. you need not lock yourself away and not socialise for fear of dietary upsets.

as you aware, your intolerances are very individual and could also be dose related. when eating out or hav-ing takeaways, it is of course important to be aware of what ingredients are in the food you are choosing.

Problem foods can be categorised into the following groups:

• Fatty foods – fried foods, butter, cream or nut sauces, nuts, creamy desserts or ice cream, fatty meats such as spare ribs, chops, duck. Because the diseased bowel may not allow the digestive enzymes for fat to work properly, the fat is not broken down to smaller components to be absorbed. the bigger fat mole-cules cannot pass through the intestinal wall and are excreted in the stools, causing fatty diarrhoea.

• Spicy foods – curries, dishes with chilli, paprika, cay-enne pepper, lots of pepper.

• Caffeinated foods – chocolate, coffee, cola and some energy drinks, e.g. Red Bull, V energy drink, Recharge. these can stimulate excessive gastric acid production, which can add to further inflammation.

• Gas-producing fruit and vegetables – beans, cab-bage, brussel sprouts, broccoli, asparagus, onions, artichokes, apples, pears, peaches, prunes. these contain certain carbohydrates that are poorly ab-sorbed and result in increased gas production and possibly diarrhoea.

• Lactose containing foods – milk, yoghurt and any foods containing them in large quantities. Lactose is a carbohydrate (sugar) that needs the enzyme lactase for digestion and absorption from the bowel. Lactase is sometimes deficient in the diseased bowel. as a result, the lactose is not broken down into smaller components to enable absorption through the intes-tinal wall. the lactose is then passed whole through the large bowel, attracting an increased water influx into the bowel resulting in diarrhoea. Pain and bloat-ing can also result.

• Carbonated drinks - increase gas volume in the bowel.

• Alcohol - can increase gastric acid secretion causing irritation to the bowel.

tips for enjoying your meal out:

• Be assertive – don’t be afraid to ask for ingredient listing and to omit any problem ingredients. after all, you are paying for it!

• Don’t starve yourself all day for your night out – your hunger will overrule your wise choices.

• Order smaller serves e.g. entrée or kid’s size – your gas-trointestinal tract will handle the smaller volume better.

• Slow down your alcohol intake – have a glass of wa-ter in between drinks or dilute drinks with soda water.

Style SuItABle OPtIOnS AvOID

ASIAn Stir-fry lean meat/fish/chicken with tolerated vegetables, mild curries, steamed rice/sushi

Fried/ battered foods, spicy curries, coconut or cream sauces

ItAlIAn/ PIZZA

tomato based sauces, vegetable, lean protein toppings

Cream/cheese sauces or toppings, salami, bacon

ChICKen BBQ chicken – no skin

Fried/battered chicken

FISh grilled/steamed/poached/baked

Fried/battered crumbed

ChIPS oven baked deep fried

SAlADS with oil-free dressing

Creamy dressings

BAKery Plain breads (if wheat is tolerated), English muffins/crumpets, turkish/Lebanese bread

Croissant/ garlic bread, cheese bread, pies, sausage rolls, doughnuts/slices

DeSSertS Fruit based, milk based (if tolerated), gelati

Cream based, pastries, ice cream

SuGGeSteD eAtInG Out AnD tAKeAwAy GuIDe

wellbeing


gEnEral inFormationOFFICe ADDreSS Level 1, 462 Burwood Rd hawthorn, Vic 3122 tel: 1800 138 029

61 3 9815 1266

FAX: 61 3 9815 1299

eMAIl: [email protected]

weBSIte: www.crohnsandcolitis.com.au

QueenSlAnD OFFICe:

tel: 1800 071 072

eMAIl: [email protected]

POStAl ADDreSS (All COrreSPOnDenCe): CCa Po Box 2160, hawthorn VIC 3122

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

APPOIntMentS If you wish to attend the CCA offi ce please ensure that you have made an appointment in advance. this is to ensure that the person you want to speak with or the materials you have requested are available.

to avoid inconvenience, an appointment can be made by contacting (03) 9815 1266.

the GlOBAl netwOrK OF IBD OrGAnISAtIOnS Crohn’s & Colitis Foundation of america (CCFa) www.ccfa.org

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

european Federation of Crohn’s & ulcerative Colitis associations (eFCCa) www.efcca.org

national association for Colitis & Crohn’s disease (naCC) uk www.nacc.org.uk

CCa 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. 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 specific 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 SPOnSOrShIP we also acknowledge and appreciate the support of orphan towards sponsorship of the CCa magazine.

DISClAIMer CCa 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 profit can be made from the magazine. no information taken from the magazine can be placed on any website without prior permission from CCa.

OFFICe ADDreSS: Level 1, 462 Burwood Rd hawthorn, Vic 3122

tel 03 9815 1266 FAX 03 9815 1299 eMAIl [email protected] weBSIte www.crohnsandcolitis.com.au

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Magazine for Crohn’s & Colitis Australia Eating out

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