Russell Matheson (Macarthur, Liberal Party) Share this | Hansard source

I would like to start by thanking my good friend the member for Dobell for moving this important motion on Crohn's disease and colitis, which are chronic gastrointestinal disorders collectively known as inflammatory bowel disease. As the member for Dobell noted, Australia has one of the highest incidence rates of IBD in the world, with more than 75,000 Australians living with these conditions, and this number is expected to increase by 25 per cent within the next eight years.

Added to the increasing prevalence of IBD, the medical community are reporting that conditions are becoming more severe and more complex and are being diagnosed in more and more very young patients. Last year, Rebekah Wilson from Kentlyn in my electorate of Macarthur bravely made the decision to talk to a local newspaper, the Macarthur Chronicle, about the devastating impacts of contracting Crohn's disease at 19 years of age and her subsequent struggle to understand and control her condition.

Crohn's disease can involve any part of the gastrointestinal tract from the mouth to the anus but most commonly affects the small intestine and/or the colon. There are many areas of healthy intestine between areas of diseased intestine. Within a diseased section, Crohn's disease can affect all layers of the intestinal wall—that is, not just the lining. This can lead to the development of complications that are specific to this condition, such as intestinal obstruction or narrowing of the intestinal wall, abscesses and swollen lumps or thickened skin occurring just outside the anus, abnormal channels connecting different loops of the intestine to itself or other body organs, and malabsorption and malnutrition. It is suspected in people who have been experiencing symptoms such as abdominal pain, diarrhoea and weight loss that have lasted for weeks or months.

Because there is no single test that can establish the diagnosis of Crohn's disease with certainty, and because Crohn's disease often mimics other conditions, it takes time and several investigations to arrive at the correct diagnosis. Bek explained to my office last week that when she was first diagnosed there was virtually no information, and even her GP was not entirely sure how to appropriately advise and properly treat her.

Bek described what she says was a three-year battle to come to terms with her chronic illness and the dramatic lifestyle changes she was forced to make. When IBD is not effectively managed or in remission, inflammation in the colon, rectum and gastrointestinal tract can become so severe that sufferers need to be hospitalised and may require surgery. Bek said that on one occasion when her bowels were inflamed during a particularly nasty disease flare she was forced to spend eight nights in hospital, but ended up discharging herself because there had been no improvement to her symptoms.

One of the most challenging aspects of IBD is the conditions are largely unpredictable with significant variation in the degree and pattern of symptoms affecting each patient. Treatment for IBD is mostly trial and error, and for Bek this means that at times all she can do is curl up in a ball and pray that the pain will pass. Here is Bek describing it in her own words how it feels to have Crohn's disease:

Anything I ate I was in a huge amount of pain in my stomach to the point where I basically stopped eating. I didn't want to go to sleep because I thought my body was failing me and I wasn't going to wake up.

According to Bek, in the years immediately following her diagnosis, the relapsing and chronic nature of her disorder drove her to the point where she all but gave up hope.

More recently, however, she's been part of a trial for a drug called Vedolizumab, which is designed to reduce inflammation by inhibiting the adhesion of T-lymphocytes to gastrointestinal tissues. This treatment requires Bek to have an intravenous infusion in hospital, and the induction regimen is followed by infusions every eight weeks. Reassuringly, Bek said that after 14 weeks she is starting to see results, but she is also about to get married and is looking to have children in the not too distant future and is concerned about the potential side effects. It is absolutely heartbreaking to think that someone like Bek, who is in the prime of her life and has so much to look forward to, is forced to take such risks in her search for a remedy for this awful condition.

That is why I commend this motion and the government's recognition that we need to improve the quality and consistency of IBD care in Australia by providing $500,000 in matched funding to kick-start a national awareness campaign for Crohn's and Colitis Awareness Month in May. We can all play a part in raising awareness and helping to find a cure for sufferers of IBD. There is lots and lots of information available on the Crohn's and Colitis Australia website about how to help, such as hosting an event, getting involved in sponsored fitness challenges or simply making a donation to find a cure.

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