Knowledge and support vital for people living with inflammatory bowel diseases
May is IBD Awareness Month
May is National Crohn’s and Colitis Awareness Month. With more than 100,000 Australians living with Crohn’s disease or ulcerative colitis, inflammatory bowel disease (IBD) is an illness that can impact people of all ages. Victoria’s Minister for Police and Water, the Honourable Lisa Neville, was diagnosed with Crohn’s disease in 1988.
As a young woman, Minister Neville found it difficult to come to terms with this hidden illness, especially given the consequences when not managed well, or during a flare up.
“It has taken many years to understand the extent that Crohn’s can affect different parts of the body and cause significant pain. Discovering the impact on my skin and eyes, the potential for abscesses and fistulas and the impact surgery can have, even though it can help with a remission.
“It has taken me a long time to really understand the breadth of the various symptoms that can occur anywhere in my gastrointestinal tract and other parts of my digestive system. I know now how important it is to identify risks that might need early treatment to prevent a flare and know how to best manage my day with treatment and medication,” Minister Neville said.
Now 34 years since she was first diagnosed, Minister Neville is grateful there are much better treatments for those living with IBD – not just a reliance on steroids – and a better understanding from the medical profession of the disease.
“But there is still stigma around the disease and a lack of understanding that can make the journey harder. For many years I shared with only a few people that I had Crohn’s and really relied on my own ability to manage it quietly, which was not always easy.
“I relied on my Gastroenterologist and immediate family to deal with it. To most, I kept it a secret – seeing it as a weakness. This was of course a mistake and meant that I didn’t get the support I need.
“Since sharing my condition more broadly in recent years, the burden of Crohn’s disease has lightened significantly. It has made my working environment easier to navigate – when and why I need time off, or to leave an event suddenly or slow down a bit,” she said.
Through her journey with Crohn’s, Minister Neville has realised how important good support and services are in living fearlessly and not feeling alone with her disease – something that Crohn’s & Colitis Australia (CCA) also understands.
“CCA is not only a trusted source of up-to-date information on Crohn’s, but also provides opportunities to build support networks and help others understand the impacts of the disease,” she said.
Access to support and resources can be even more challenging for those living regionally with IBD. Patrick Lickiss was a teenager given limited information and limited time to process his diagnosis of Crohn’s disease before surgery.
“With limited services in regional Australia, there is often less support and information for those living with IBD in these areas. But I have mostly been affected by the lack of contact with other people experiencing IBD. I didn’t realise this was missing until I met people at a support group and felt a very overwhelming and uplifting sense of vindication for my independence developed through my experience of IBD,” Patrick said.
Patrick set up a support group in his local area of Geelong through the service offered by CCA.
“I was supported every step of the way and given full autonomy to create a safe space within my community. CCA’s information, helpline and awareness month are also invaluable in terms of increasing understanding of the disease,” Patrick said.
May is Crohn’s and Colitis Awareness Month and offers an opportunity for people living with Crohn’s or ulcerative colitis to courageously speak up and remove the stigma around IBD to increase the public’s understanding.
With the generous support of their sponsors Janssen, Pfizer, Dr Falk, Takeda, Celltrion Healthcare and Abbvie, CCA hopes this awareness month will be a chance to band together, start conversations about IBD and spread awareness and understanding of Crohn’s and colitis. Those living with these diseases can get involved with CCA’s ‘You’ve Got Guts’ campaign by sharing their brave stories and comments on social platforms to #flushthestigma around IBD as #IBDHasNoAge.
As the peak support and advocacy body in Australia, CCA provides access to high quality support services and information about IBD when they need it, including through their new website, designed to make it easier for the community to find the information and resources they seek.
Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.
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