‘Looking back now I realise I was in a big flare that went on for many years’

The Irish Society for Colitis and Crohn’s Disease and Janssen Sciences Ireland have just launched season two of Gutcast, the first ever podcast series in Ireland for people living with inflammatory bowel disease (IBD).

In episode 2 – Lifestyle, host Amy Kelly of the society delves into the many ways IBD impacts the lives of those living with it, including Karen Byrne, who talks about her experience with IBD and pregnancy.

When Byrne received a diagnosis of Crohn’s disease in 2011, she was 26 and relieved to finally have the answer to symptoms that had plagued her for a decade. Her next thought was what it meant for pregnancy.

Crohn’s disease and ulcerative colitis are digestive disorders referred to by the umbrella term of inflammatory bowel disease. Each is characterised by chronic inflammation of the gastrointestinal tract.

Byrne’s symptoms, which came on during her Leaving Cert year, included stomach pain, diarrhoea and weight loss. She was diagnosed by her GP as having irritable bowel syndrome (IBS) brought on by stress, and felt she had no choice than to get on with it. But over time it got worse.

In 2011, almost a decade after her symptoms began, Byrne’s health declined rapidly, with additional symptoms that included fatigue, weight loss and skin issues. It was at this stage that a colonoscopy finally found the source of the problem: Crohn’s disease. 

The relief gave rise to an immediate concern about the possible impact it might have on any future pregnancy.

“I put it to the back of my mind at that stage because I wasn’t ready to have children,” she says. “It wasn’t until I started trying to have children that I realised, okay, this isn’t happening. So, I wasn’t sure whether it was the Crohn’s, or whether it was something else. Looking back now, I was in a big flare and that went on for many years.”

Byrne is now a proud mum of two and both of her pregnancies went smoothly. “Thankfully there wasn’t any major impact on my pregnancies, other than some extra appointments with both my gastroenterology team and the maternity team.”

Seek reassurance 

It’s natural for any mother to worry during pregnancy, so Byrne scheduled an appointment with her gastroenterology team to talk about it. “They went through all my questions and reassured me I was safe to proceed until later stages of pregnancy.”

The concern is familiar to Dr Eoin Slattery, consultant in the Department of Gastroenterology at Galway University Hospital.

“In broad terms, women with IBD have the same level of fertility as others,” he explains, “assuming that they are in remission at the time of trying to conceive and not in a flare.”

Inflammatory bowel disease is a chronic disease with no definitive cure. Its flares or flare-ups are kept under control with medications and, possibly, surgeries, which induce and maintain remission.

“It doesn’t necessarily work first time for everybody,” Slattery explains. “I think the statistics are somewhere in the line of one in seven or one in eight couples struggle to get pregnant within six months of trying, for instance, and that’s exactly the same for inflammatory bowel disease as it is for everybody else.”

This includes cases where a woman with IBD has a stoma,  an opening into the digestive system on the outer wall of her stomach. “It has no impact on getting pregnant,” he says. “Where it may be an issue is when a woman is heavily pregnant, in that it might cause some discomfort. But there are no significant problems, and these women will go on at the same rate to have a normal vaginal delivery.”

The good news is that if your disease is under control when you conceive, the risk of having a flare-up during your pregnancy is low. On the flip side, after delivery you are potentially at greater risk of a flare-up, so it’s important to stay in close communication with your consultant to manage this.

While it is harder to conceive in a flare, it’s not impossible. And in those cases too, the pregnancy will typically progress as normal, Slattery reassures.

Lifestyle supports

Changes to your lifestyle can help support you through pregnancy. 

“Because it’s a gastrointestinal illness, there may be low micronutrients, B12 or folates,” Slattery says. “It is slightly more important that women with IBD have folic acid, though it is recommended that all women do.

Equally, some women will become iron deficient in the course of their pregnancy, and there is a slightly higher risk of that with IBD, but again it is easily managed.”

It is also important to speak to your doctor about the potential impact on breastfeeding. “It depends on the treatment, but for the majority of IBD medications women can breastfeed, with data suggesting that for most drugs either no - or a trivial amount of - drug is detected in breast milk, with no risk to baby.”

These days Karen Byrne volunteers with the Irish Society for Colitis and Crohn’s Disease and is incredibly positive and upbeat about her condition. Though she has good days and bad, Crohn’s “does not define” who she is, she says.

When baby comes along, Byrne’s advice is to keep looking after yourself. “Sleep when baby sleeps and keep on top of your treatment and any appointments you may have,” she says. “Continue getting as much nutrition as possible - and drink plenty of water.”

Don’t miss season two of Gutcast, the award-winning podcast series for people living with IBD presented by the ISCC and Janssen Sciences Ireland - iscc.ie/gutcast

Gutcast is hosted by ISCC director Amy Kelly, who lives with Crohn’s, and features a range of guests, including healthcare experts and people living with IBD, providing advice and insights and real life experiences.