Do More Women With IBD Choose to Stay Childless?

The decision to have a child is a difficult one for lots of prospective parents. There are a lot of questions to consider, whether that's financials, childcare, or even the environmental impact of bringing new life into the world. And, of course, many people just don't want children, which could be due to anything from not wanting to compromise their lifestyle or just not seeing becoming a parent in their timeline. And, of course, that's absolutely fine.

However, research shows that voluntary childlessness (as opposed to being childfree to due infertility) is increasing in women with IBD, and women with IBD are more much likely to be voluntarily childless. One study reported 18% of Crohn's patients and 14% of ulcerative colitis patients were voluntarily childless (compared to just over 6% of women who don't have IBD) and also had fewer children than those without IBD. This is not because these women cannot have children: the rate of non-voluntary childlessness (due to infertility) was the same as those who didn't have IBD; suggesting IBD didn't have much impact on fertility.¹

Why would more women with IBD choose to stay childless?

There are a few different reasons for this. Ignoring other factors (such as not wanting children), one is that it is due to the burden of living with a disease, whether that's the practicalities (such as challenges in meeting a partner), dealing with fatigue, or worries that they wouldn't cope with a child whilst also dealing with a chronic illness. This may be the case with those who have severe disease or surgery: the group that was voluntary childless had more hospital admissions than those who were planning children.¹

There's not much surprise in this: the burden of a flare-up, hospital admission, and surgery can be overwhelming and it can feel as if getting through the next hour or day is difficult, let alone planning for the future. Some of us with IBD find planning for big life milestones hard (I know I do) because of the unpredictability of a disease. And there were many times before having a child when I asked myself, "How can I take care of someone else when my body cannot take care of itself?"

However, a study by Crohn's and Colitis UK found this also has to do with poor knowledge about what pregnancy with IBD would actually involve. This study found women who had children with IBD understood more about pregnancy and IBD. Those who were voluntarily childless had less knowledge and were less likely to seek medical advice, concluding that in these cases, women may still be childless unnecessarily.²

Does IBD affect pregnancy?

There are many uncertainties that women may not feel educated about. Firstly, they may believe they can't have children with their condition. I know I was so surprised when my body managed to get pregnant. They may have been given little or inaccurate information about what pregnancy and labour with IBD could look like, especially if they have issues such as a fistula which could make childbirth more complicated (in my case, I had to have a C-section).

Drugs are another big one. I received mixed messages over whether I could try for a baby when on Humira (I eventually did and all was fine) and whether I needed to be in remission. A lot of the messaging around trying for a family is "wait until you're in remission." But what if we never get there? Does that mean we don't get to have a family?

Like many areas of IBD, there is much more that needs to be done around education and discussion around having a child and IBD. Whilst having a child isn't on everyone's priority list, patients with IBD should be supported and informed in their decision to have a child or remain child-free.