After six operations and a decade in remission, Thirroul resident Kathy Stewart thought she had seen the last of Crohn’s disease but it has reared its ugly head again.
The 54-year-old was diagnosed with the form of inflammatory bowel disease (IBD) more than 30 years ago and has since been a support to thousands of sufferers as the president of IBD Support Australia.
She is now supporting the first Australian survey into the psychological and social impact of the condition, and she hopes this will lead to better services and support for the 70,000 Australian sufferers.
‘‘Unfortunately in the past it hasn’t been something that gets talked about much generally. And it has really only been a few years where people are even starting to hear about Crohn’s disease or ulcerative colitis,’’ Ms Stewart said.
‘‘People living with IBD, especially younger people, tend to be embarrassed enough about their bowel issues without discussing problems with relationships and having sex and how they feel they are coping with the disease.
‘‘It is very hard to go to work or go out socially if you don’t know when you are going to be faecally incontinent. And if you meet someone you’re interested in, when do you tell them you have a bowel disease and may have times when you can’t get off the loo or may not want to leave the house because of diarrhoea.’’
IBD is the term used to describe autoimmune illnesses such as Crohn’s and colitis. It is commonly diagnosed between the ages of 15 and 24.
Ms Stewart first started experiencing symptoms at 22 but it wasn’t until 18 months later that she received a diagnosis.
‘‘It started with nausea after I had cooked dinner – I often wouldn’t want to eat because I thought I would throw up,’’ she said.
‘‘Then I started to experience ongoing abdominal pain and diarrhoea, but doctors couldn’t tell me what was wrong. Even after I was admitted to hospital with my first bowel obstruction, there were no answers.
‘‘When I dropped to 45kilos I was told I had a lymphoma. And it was only when I went under the knife that they found I had Crohn’s disease instead.’’
After five more operations and a variety of medications, Ms Stewart went into remission in 2003. But the symptoms came back this year. And she will find out soon whether she needs further surgery.
Ms Stewart has been involved with IBD Support Australia since its start in 2003, and has both offered and received support through the online forum.
She encourages people with IBD to join the conversation and take part in a nationwide survey at ownyourIBD.com.au