Motherhood and inflammatory bowel disease

It is desperately sad that women are opting to remain childless because they are unable to get an accurate picture of the risks they face.

Pregnant women, resized belly
Image: University of Leeds

A new study by the scientists at the University of Leeds, women with inflammatory bowel disease (IBD) requires more knowledge about pregnancy. This will help them to take more informed decisions about whether to have a child or not.

Women with bowel disease often avoid giving birth to a child in the fear that the pregnancy would affect their health or that of their baby. No doubt that the disease can cause complications, but the study shows that one-third of women with the condition will not get worse and another third will actually see an improvement in their health.

Scientists chronicled the experiences of 22 ladies who have had children, to plug an information gap about the realities of turning into a mother with IBD.

Professor Anna Madill, a psychologist who supervised the research, said: “It is desperately sad that women are opting to remain childless because they are unable to get an accurate picture of the risks they face.

“If they have access to that information, they may make an entirely different choice.

“The healthcare system needs to make sure that women living with IBD have access to all the facts necessary to make a fully informed decision.”

Inflammatory bowel disease is an umbrella term that refers to severe disorders of the digestive system, including ulcerative colitis and Crohn’s disease, but not irritable bowel syndrome (IBS), which is a separate condition. The most common symptoms include stomach pains, fever, weight loss and recurring diarrhea and fatigue.

The testimony of the women who took part in the study revealed fears about the consequences of becoming pregnant: whether they would pass on the condition to their baby or if they could ever cope with a small child during periods when their condition would flare-up.

One of the participants reported that her worry before getting pregnant was that she would pass on the condition to her child. There is a hereditary segment to the sickness.

She said, “I was very conscious of what might happen. What was the chance that a child of mine would have Crohn’s disease?”

“So we saw a geneticist and investigated what the chances were of a child getting Crohn’s disease from a mother with Crohn’s disease, and that was quite positive, so we decided to go ahead.”

Some of the women were surprised at how quickly they became pregnant, given the extended periods of ill health they had suffered.

One mother said: “There were no issues [with getting pregnant] which shocked me, bearing in mind my body had gone through so much previously – I thought it would be hard to get pregnant but no, there were absolutely no problems.”

Another mother said living with IBD brought an unpredictability to life. There were times when she would have to cancel plans because her disease would suddenly get worse. She said dealing with such uncertainty helped with the transition to motherhood.

“I’ve got used to kind of trying to adapt my life around my illness over the years and really I think that is a very helpful skill for the baby as well because I think people aren’t prepared for how a massive change it is to your life and then it’s about being adaptable. Babies do not do what you want them to do. They have their own routine,” she said.

The women also had support from family and friends.

Professor Madill said: “One of the main points to emerge from the study is that learning to live with a chronic illness has helped the women prepare for motherhood. These women coped well with becoming parents.”

The study is detailed in the journal Qualitative Health Research.

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