IBD and Pregnancy: Frequently Asked Questions
Information from this article is taken from our CDHFTalks IBD and Pregnancy video, with Dr. Yvette Leung, MD, FRCPC Assistant Clinical Professor University of British Columbia IBD Centre of BC Clinical Lead Subspecialty Clinics.
Inflammatory Bowel Disease (IBD) affects people of all ages, with the peak onset of 15-35 years for Crohn’s disease, and usual onset of 15-45 years for ulcerative colitis, both carrying the diagnosis through reproductive years.
If you have IBD and are looking to start a family, you may have a lot of questions regarding pregnancy. CDHF always recommends working with your physician and gastroenterologist to ask questions specific to your IBD, but with the help of Dr. Leung, we have laid out several frequently asked questions to start that discussion. Let’s get into it!
I have IBD, should I even consider getting pregnant?
It’s important to recognize that each person with Crohn’s disease and ulcerative colitis will have different chronic symptoms related to their disease state, will have different history of surgery related to their disease, and may also be on different medications to continue treating their disease and to keep their disease in remission.
Due to this, it is important that if you’re thinking about having a family that you involve your gastroenterologist first. More importantly, don’t make assumptions that you shouldn’t get pregnant because of your disease! Together with your physician, and your gastroenterologist – you can have a discussion that is specific to your IBD.
Is there a chance I could pass my IBD on to my child?
We know that there are certain genetic mutations that put individuals at a higher risk than the general population of getting Crohn’s and colitis. Studies have shown that that although there’s a genetic component to getting Crohn’s and colitis, it’s not the kind of disease that you for sure will transmit it to your children. In fact, the risk is less than 10% if one parent has IBD, and around 20-30% if both parents have IBD. 1
Long term studies of birth registries that follow children and how they develop into adulthood who have a mom or a dad who had a diagnosis of IBD, show that there is a very small number of children who ultimately get IBD because of their mom or dad having it.
“We think of IBD as being hereditary, but not hereditary in any type of what we call high penetrance. So, most individuals will not have children that will have Crohn’s or colitis.” – Dr. Leung
If my IBD is active, can I still plan my pregnancy?
When you and your partner decide that you may want to try to get pregnant, there are important factors that should be discussed first. The first is that you should always be in remission. Another reason why it is very important to discuss with your physician and your gastroenterologist to ensure you are aiming for remission prior to getting pregnant.
Dr. Leung gives an example of this:
“In a clinic last week I saw six patients who are planning on getting pregnant – three of them weren’t in a good state of health – they all had very active disease. Because of this, we discussed what that meant and right now, we’re going to work on controlling their disease before they get pregnant. It is very important that when they go into a pregnancy, their disease is as inactive as possible to avoid complications during those nine months.”
This is becoming an emerging topic for many IBD centres, as we know many patients are diagnosed with IBD during their reproductive years. Dr. Leung recommends that her patients be in remission about three to six months before they start trying to get pregnant. This is because studies have shown that if you get pregnant while your disease is active, a large majority of times that disease will continue to get worse during pregnancy and potentially have negative effects on the pregnancy. For example, the baby doesn’t grow the way the baby should, it may precipitate a miscarriage, or a pre-term labour.
Is it still safe to continue my medications during pregnancy?
Firstly, it is important to not make any decisions about stopping your IBD medication without speaking with your doctors. In general, most IBD medications (particularly the biologics or the injectable type drugs) are safe to continue during pregnancy.
For example, biologic drugs such as Infliximab (different brand names Remicade and Inflectra), Adalimumab (brand name Humira), Vedolizumab (brand name Entyvio), Ustekinumab (brand name Stelara) which are all injectable drugs, have been shown in studies to be generally safe for pregnancy.
This is because biologics are large molecules, which are too large to cross the placenta barrier in the first trimester in significant amounts, so they do not cause birth defects. However, in the second and third trimesters, they do cross the placenta barrier, but there is no evidence that biologics need to be stopped during this time.
Two drugs – Methotrexate and tofacitnib are two oral medications that are not safe during pregnancy, and should be stopped at least 3 months preconception. 2 Examples of these drugs include Trexall and Xeljanz.
New drugs such as Zeposia, Xeljanz, and Rinvoq have limited data on them because they are new. Due to this, Dr. Leung says that “for now, we recommend that women do not start them at the time that they are trying to get pregnant.”
Dr. Leung explains:
“If I have a woman in my clinic that I was thinking of starting on one of these new drugs but they tell me they’re going to get pregnant in the next year or so, I would not start any of those three medications. Similarly, if I had a woman already on them, we would counsel about stopping them, getting them on another drug that has a safety record for pregnancy before trying to get pregnant. So, similar to what I said about Methotrexate, these three new drugs I would not use during pregnancy because we have very limited data as of today.”
How should I change my lifestyle habits and supplement my diet?
In general, doctors will counsel patients to stop smoking or drinking alcohol. If you’re on other medications that are unrelated to IBD, they should be reviewed with your family physician.
Further to this, doctors will want to check your vitamin levels. A very common vitamin level that would be checked before a woman gets pregnant would be her iron levels, and Vitamin D. And depending on those iron levels, your doctor may recommend supplementing before getting pregnant.
What about breastfeeding my baby, is it safe while on my medication?
Majority of patients who chose to continue their treatments during pregnancy will also be encouraged to stay on their medications during the postpartum stage. Dr. Leung encourages patients to breast feed (if they so choose), as studies show those when infants who are breastfed get older, they are less likely to get immune-mediated disease like Crohn’s disease and ulcerative colitis.
The medications that are safe to continue during pregnancy are also safe to continue during nursing. The majority of medications for IBD mentioned above other than methotrexate and tofacitinib are considered safe to continue while breastfeeding.
Are my baby’s chances of infection higher because of my IBD? What about vaccinations?
You may be asking yourself, “I remember when I first started these biologics, my doctor counselled me that I may be at high risk of infection. So, how is that possible then if later on in pregnancy, the biologics start crossing the placenta into the developing fetus and the baby is then born with these drugs in their body? Are they going to be okay if I had to be worried about infections?” This is a valid concern.
The research that followed newborns into various stages of their life has shown that the immune system has different pathways to protect babies against infection. As mentioned above, in the second and third trimesters, biologics do cross the placenta barrier, so they are born with biologics detectable in their body. However, because our immune system has different layers of protection, we have found in these studies that the infants in their first three to six months of life are not at higher risk of infection than babies born to moms that are on no medications.
So, though it’s theoretically possible that these babies are at higher risk of infections, in fact, the data tells us that they are just as healthy. Again, it’s very important you speak to your physician and gastroenterologist to speak to your specific situation.
Lastly, in terms of vaccinations, after baby’s been born, another commonly asked question is around whether or not babies can get the usual vaccines – and the answer is yes. In fact, there is more and more emerging data today to support that.
The information in this IBD and pregnancy article and CDHFTalks video does not go over every detail of pregnancy and IBD, but was developed to give you a framework so you can feel empowered to go to your own gastroenterologist and ask questions.
In summary, Dr. Leung clarifies that first and foremost – for those who are thinking of starting a family, there are very few cases where a doctor would say you shouldn’t based on your disease.
Secondly, most medications are safe so don’t go ahead and stop them without consulting your health care team, specifically your gastroenterologist. Thirdly, there has been great research to show that babies exposed to the majority of IBD medications are born very healthy. And finally, Dr. Leung stresses that it is very important for your disease to be in remission before you start trying to get pregnant.
- Habal F M & Huang V W. Review Article: a decision-making algorithm for the management of pregnancy in the inflammatory bowel disease patient. Aliment Pharmacol Ther. 2012 January; 35:501-515.
- Poturoglu S, Ormeci AC, Duman AE. Treatment of pregnant women with a diagnosis of inflammatory bowel disease. World J Gastrointest Pharmacol Ther. 2016 Nov 6;7(4):490-502. doi: 10.4292/wjgpt.v7.i4.490. PMID: 27867682; PMCID: PMC5095568.