When treating individuals with inflammatory bowel disease (IBD), either Crohn’s disease or ulcerative colitis, I’m often asked: “Will this stop me having children?”. Given that IBD affects around 180,000 Australians and is typically first diagnosed between the ages of 15 and 35, that question arrives at almost exactly the same life stage many people are starting to think about a family. With these chronic diseases affecting a substantial proportion of women in Australia, it is one of the most common and misunderstood concerns I see in practice.
Why disease control matters more than diagnosis
The most important message I can give any woman with IBD who is planning a pregnancy is that fertility is shaped far more by how well disease is controlled than by simply having IBD. When inflammation is poorly managed, several things can contribute to suboptimal fertility. Malnutrition or a low body weight can disrupt the menstrual cycle, leading to irregular or anovulatory cycles, where ovulation isn’t happening predictably or at all. Active disease has also been linked to lower ovarian reserve compared with people of the same age whose IBD is well controlled, meaning fewer eggs are available for natural conception. Active disease can affect libido and sexual function too, which has its own bearing on the chance of conceiving. Optimising control before trying to conceive isn’t just good general health advice in IBD, it can in some individuals improve their likelihood of conceiving.
Crohn’s and ulcerative colitis: different mechanisms, same underlying message
I’m often asked whether Crohn’s disease or ulcerative colitis is ‘worse’ for fertility. The honest answer is that it has far more to do with disease activity, prior and current disease complications and surgical history than which subtype of IBD a woman has. Women with ulcerative colitis who have had their large bowel removed (a colectomy) have higher rates of infertility than those who haven’t needed that surgery, potentially due to post-surgical intra-abdominal scarring. In Crohn’s disease, infections or abscesses in the pelvis can leave scarring on the fallopian tubes, affecting the safe passage of the egg to the uterus. Poor nutrition, low body weight and ongoing inflammation can affect fertility in both conditions equally. So the real dividing line isn’t Crohn’s versus colitis, it’s controlled versus uncontrolled disease, and surgical history.
The misconceptions
Two misconceptions are prevalent. The first, common among younger patients, is the belief they will never be able to fall pregnant at all. This incorrect belief paradoxically leads some to skip contraception altogether as adolescents and young adults, under the mistaken assumption it isn’t necessary, occasionally leading to unplanned pregnancy. Furthermore, these women can experience years of unfounded grief about never being able to have a family. The second group of misconceptions relate to pregnancy itself, and are commonly conveyed to me. Individuals are fearful a pregnancy may negatively impact upon disease control. They are also concerned about passing on the disease to their children, that the medications they take will cause birth deformities or their baby to have a compromised immune system, or that pregnancy itself will be inherently complicated. These fears are completely understandable, but they are largely unwarranted. On the genetic question specifically, the numbers are reassuring: the risk of a child developing IBD when one parent has the condition is around 5 to 8 per cent. Still a low absolute risk, and nowhere near what most patients assume. Women with IBD also often worry that they won’t be able to safely have a vaginal delivery; in the vast majority of patients, a vaginal delivery is possible and safe. A caesarean section is only recommended as preferable for those women with Crohn’s disease and active perianal fistula, very severe inflammation of the lowest part of the bowel (the rectum) and in those with a prior ‘J-pouch’ surgery.
Preparing for pregnancy
My advice is to start the conversation early, ideally six to twelve months before trying to conceive, with both your GP and your treating specialist. This gives time for dedicated preconception counselling with someone experienced in IBD and pregnancy. As with any woman planning a pregnancy, nutritional markers and immunisation status should be checked, and a pregnancy multivitamin started. Smoking and recreational drug use should stop. A thorough medication review is essential: most IBD medications are safe to continue while trying to conceive and throughout pregnancy, but always confirm with your specialist gastroenterology doctor beforehand.
Just as important is getting an objective read on disease activity, through a stool test, bowel ultrasound or endoscopy, since IBD in remission before and during pregnancy gives the best outcomes for mother and baby, and symptoms of active disease can otherwise be confused with normal pregnancy symptoms. Women who need assisted reproductive technology, including IVF, can also be reassured this can be used safely and effectively alongside IBD care.
Stress, nutrition and reasons for optimism
As in the general population, severe stress and malnutrition can affect ovulation and egg quality, and active IBD also raises the risk of miscarriage, another reason optimising control before conception matters so much. What gives me genuine optimism is that when disease is well controlled, nutrition is optimised, and other health issues are addressed, women with IBD should not be held back from having the family they want.
I’d like to see rates of voluntary childlessness in IBD fall to match the general population, particularly for women in regional and remote parts of Australia. Dedicated IBD pregnancy services like the IBD pregnancy clinics at St Vincent’s Hospital Melbourne and Monash Health now offer telehealth for exactly this reason; Crohn’s & Colitis Australia can help you to connect with a specialist with an interest in the field [1].
Every person deserves the chance to build their family the way they choose, with proper specialist support behind them, and I believe that’s genuinely achievable for people with IBD in Australia today.
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