Let’s talk about inflammatory bowel disease

Amanda Lyons

18/05/2018 12:38:31 PM

Crohn’s and Colitis Australia is encouraging people to open up about inflammatory bowel disease and leave behind the associated stigma.

ABC radio personality Jacinta Parsons found her GP vital in the diagnosis and support of her Crohn’s disease.
ABC radio personality Jacinta Parsons found her GP vital in the diagnosis and support of her Crohn’s disease.

Inflammatory bowel disease (IBD) is the collective term for Crohn’s disease and ulcerative colitis, chronic and incurable autoimmune diseases of the gut that cause a number of persistent physical symptoms.
‘Symptoms can range from abdominal pain, diarrhoea, weight loss, bleeding and fevers at different stages,’ Crohn’s and Colitis Australia (CCA) Chief Executive Officer Associate Professor Leanne Raven told newsGP.
The disease can also have a significant impact on people’s mental health.
‘It’s not only painful, it can also be really embarrassing and people can develop fears and feel quite shameful about it,’ Associate Professor Raven said.
‘It can limit their ability to conduct their daily life, like going to work or university or even taking the dog for a walk. [People with IBD] need to think where they might be able to go to get through the symptoms they have.’
The embarrassment people can feel about IBD may cause them to avoid discussing what they are going through with others, including their GP, which can delay diagnosis.
But early diagnosis is very important for people with IBD; not only does delayed recognition mean they suffer its symptoms for longer without proper treatment and management, people with ulcerative colitis can often require surgery and lack of treatment altogether can result in death.
Jacinta Parsons, ABC Radio Melbourne Breakfast presenter and ambassador for the CCA, was diagnosed with Crohn’s disease in her early 20s.
‘The early diagnosis was a relief, as it explained the painful experience I had been going through,’ she told newsGP. ‘It was great to put a name to it and begin to understand what that might mean for my life.
‘Its early management involved long bouts of steroids and hospital visits to keep the disease under control. Over the years, I had to discontinue studies and work became very difficult to maintain. It took a lot to ensure I stayed mentally well while I was physically unwell.
‘The daily impact of the disease involves fatigue, bone soreness and abdominal pain. I also have periods where my temperature is raised and I am fatigued and sore with fever.’
Australia has one of the highest rates of IBD prevalence in the world – and the numbers are climbing.
‘We know there’s about 85,000 people in Australia who currently have IBD,’ Associate Professor Raven said. ‘We also know that incidence is increasing, so we expect numbers to be sitting at about 100,000 people in a few years.’
GPs are central in efforts to identify the disease as early as possible, and Associate Professor Raven wants to ensure they are able to recognise possible symptoms and discuss them with their patients.
‘People can suffer with this and not know why this is happening to them,’ she said. ‘It’s really important that GPs … understand it’s going to require managing not only the physical symptoms, but the mental health component, as well.’
Ms Parsons has also found assistance from GPs to be vital in helping her live with and manage her Crohn’s disease.
‘From the early diagnosis to now, GPs have played one of the most crucial roles in the good management of the disease,’ she said.
‘That included understanding me as a person going through a chronic condition that has impacts on my life beyond the physical, and I have really valued support from GPs who understand that the disease can take a toll.
‘I had a GP who once told me, simply, that what I was going through was hard and I should be proud of what I had done. That meant the world to me.
‘They also supported me in feeling legitimate in taking time off studies by writing letters to educators on my behalf. Those small acts make a profound impact on the pressure and stress that we can go through.’

Crohn’s-and-Colitis-Australia Crohn’s-disease inflammatory-bowel-disease ulcerative-colitis World-IBD-Day

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Louisa   23/02/2020 4:25:55 PM

I’m looking to find a GP in Melbournes Eastern to south Eastern Suburbs with a strong interest in managing Crohn’s disease. I have a specialist who I see occasionally but I find I’m always at the GP with related conditions and it would be great to have a GP with time, patience and a genuine interest in helping managing Crohn’s Disease

Jane Heard   16/03/2020 2:50:40 PM

Hello, my son has just been diagnosed through the public system but has private health insurnance. We are trying to find a GP expereinced with Ulcerative Colitis and a specialist in Melbourne. He currently lives in St Kilda. Any information would be a big help at this stage. Thank you