‘The difficulty is that people with inflammatory bowel disease don’t want to talk about it’
IBD is on the rise and experts are unsure why
Molly Carroll: ‘The thing with IBD is that you don’t look sick so I’d like people to realise that if someone looks healthy on the outside, it doesn’t mean everything is okay on the inside.’
Molly Carroll first suffered from bad stomach cramps, diarrhoea and vomiting when she was studying for her Leaving Certificate mock exams in 2010. Her GP could find nothing wrong so she put it down to stress. A few months later, she found herself in hospital with a perforated colon. Within days, she had to have her entire colon [large intestine] removed in emergency surgery and spent most of the year recovering.
Now nine years later, she has become a vocal advocate for better understanding of inflammatory bowel disease (IBD). “The surgery was a blessing in disguise but I spent about a year in recovery. I had to learn how to walk again and I had an open wound for a year that I learned to dress myself,” says Carroll.
Abandoning the idea of doing the Leaving Certificate altogether, she trained and worked as a hairdresser for four years. “I had to give that up because it was too physical. I always have some level of pain and inflammation,” explains Carroll. She uses pain medication and heat patches to help relieve the pain.
Carroll is one of a growing number of people suffering from and being diagnosed with IBD. There are about 40,000 people in Ireland living with inflammatory bowel disease. Experts are uncertain what has caused the increasing prevalence of the condition but it’s not related to the milder and also common condition, irritable bowel syndrome (IBS).
“People often confuse them but IBD in an auto-immune disease which causes bleeding, inflammation, ulceration and pain. It is not diet-related whereas the symptoms of IBS are bloating and pain associated with certain foods,” explains Angela Mullen, a nurse specialist in IBD at the Mater University Hospital. Crohn’s disease and ulcerative colitis are forms of IBD.
Mullen says that not only is IBD becoming more prevalent but more people are suffering from more severe symptoms. “These include bloody diarrhoea, mucous in the stools, weight-loss and abdominal and/or rectal pain,” she explains. A bout of gastroenteritis can cause the onset of IBD as can stress/anxiety or the overuse of antibiotics. Non-steroidal anti-inflammatory drugs such as ibuprofen and diclofenac can also exacerbate symptoms.
Mullen says specialist gastrointestinal services are key to helping people manage their condition. “There are high-tech drugs prescribed by gastrointestinal specialists which can help manage the condition but as with other chronic diseases, patients can experience unpredictable flare-ups that will need management,” says Mullen.
All sufferers of IBD need to keep as well and healthy as possible to reduce symptoms. “The difficulty is that people with IBD don’t want to talk about it. But, a good low-fibre diet, good sleep and exercise are all important. Some people will also find mindfulness helps reduce stress and anxiety,” says Mullen.
The Irish Society for Colitis and Crohn’s Disease has just launched an app “IBDWELL” to support people living with IBD in Ireland. See iscc.ie for more details.
Following two years working in Canada, Molly Carroll returned to work as an executive assistant in Dublin. “I just have to be mindful about keeping my stress under control. I will always know where the toilets are if I need them but otherwise, I lead a normal life. I drink alcohol. I go to the gym. I drive a car. If I’m on a night out, I’ll take Dioralyte with me because I get dehydrated easily without my colon,” she says.
Carroll says she gets support from an international WhatsApp group she belongs to. “I was very isolated when I first had IBD but then I started to find people. The thing with IBD is that you don’t look sick so I’d like people to realise that if someone looks healthy on the outside, it doesn’t mean everything is okay on the inside,” she says.
Carroll shows images of her ileostomy bag on her Instagram account @mollyaislinn to help people with IBD get over the stigma of the disease. “The important thing is for people not to be embarrassed about it,” she says.
Read: Living with . . . IBD