Researchers recommend healthcare professionals talk to women with inflammatory bowel disease (IBD) about pregnancy early in their treatment so they can make a well-informed decision about whether to have children.
The study, “When Your Pregnancy Echoes Your Illness: Transition to Motherhood With Inflammatory Bowel Disease,” was published in the journal Qualitative Health Research.
Findings resulted from the joint work of researchers from the University of Leeds and the University of Bradford, both in the United Kingdom.
Most women with IBD, which includes ulcerative colitis and Crohn’s disease, can have a normal pregnancy and deliver a healthy baby.
Inflammatory bowel disease is a chronic illness, which means patients will likely experience times when the disease flares up and causes symptoms, followed by periods of remission when patients may not notice symptoms at all.
There is a genetic predisposition for IBD, and first-degree relatives of patients are approximately three to 20 times more likely to develop IBD compared with the general population.
Women with IBD are usually worried about the activity of their disease during pregnancy, passing the disorder on to their unborn child, and the effect of their underlying IBD on the pregnancy itself. Because of this, women with the condition often avoid having children.
Research suggests that women should attempt conception at a time when their IBD is in remission. Female patients who have active disease at conception are more likely to have active disease during pregnancy.
To better understand patients’ experience with motherhood, researchers interviewed 22 mothers with IBD.
One patient mentioned she was worried about passing the condition on to her baby. However, after seeing a geneticist who explained the chances of a child getting Crohn’s disease from his mother, she decided to start a family.
Some patients didn’t expect to become pregnant so soon. 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.”
“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,” another mother said. “Babies do not do what you want them to do. They have their own routine.”
Other patients mentioned that their previous concerns about diet and dealing with the everyday changes associated with IBD helped them transition into motherhood with healthy lifestyle habits.
“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,” Prof. Anna Madill, a psychologist who supervised the research, said in a press release. “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, added Madill, who also has IBD.
Fourteen years ago, Madill experienced a flare-up six months into her pregnancy. But she gave birth to a healthy girl and has been in remission ever since.
“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,” Madill said.
Researchers “recommend health professionals initiate conversations about reproduction early and provide a multidisciplinary approach to pregnancy and IBD in which women have confidence that their ongoing treatment will be integrated successfully with their maternity care.”