My Journey with IBD & Pregnancy

I’ve partnered with the American Gastroenterological Association (AGA) to bring you this blog post. Read on to learn more about a new resource that was just launched today to help women navigate IBD and pregnancy.

Until my early 30s, I wasn’t really a “kid person.” I never really played with dolls as a kid. I didn’t babysit younger siblings or cousins. And, honestly, I had very little interest in other people’s kids.

When Mal and I got married having children was always part of our plan, but it wasn’t a priority for us. We got married kind of young (we were the first of our friends), so we weren’t in any kind of rush. Plus, we were enjoying life with just the two of us, so the kid stuff wasn’t a topic of conversation for many years. But, then, things with my health changed.

I was diagnosed with ulcerative colitis at 31 years old, totally out of the blue. (Ulcerative colitis is an inflammatory bowel disease (IBD) along with Crohn’s disease.) I was 100% healthy prior to my diagnosis, but now I was dealing with all sorts of awful flare symptoms that ultimately encouraged Mal and me to start trying for a family.

I still remember being so sick on a trip that Mal and I took to Mexico. I was in the middle of battling a terrible flare. A steroidal treatment kept me healthy-ish, but I had taken the medication for so long that I became steroid-dependent and my gastroenterologist (GI doctor) was encouraging me to try biologics. I didn’t love the idea of biologics, but I wasn’t getting any better (or any younger), so Mal and I agreed it was time to start trying to get pregnant.

Both my GI and OB/GYN were supportive of us trying to start a family. It was important to have coordination between both of my doctors, and I felt like a lot of the responsibility was put on me to make sure that I had the information that I needed. Thankfully, I had a (mostly) healthy pregnancy, but I know women with IBD often receive inconsistent medical advice across their providers. But, the reality is, with proper planning and care, women with IBD can have healthy pregnancies and healthy babies.

Unfortunately, many women with IBD decide not to have children based on misperceptions about their disease and pregnancy. This may be because women with IBD are worried about how their disease could impact their pregnancy. If your body is in a flare, for instance, your baby will not get what it needs to thrive. And I can totally relate to this sentiment – I definitely hesitated with our decision to start trying for a family. It’s no wonder that the number of women with IBD who are voluntarily childless is three times greater than that of the general population.

Obviously, planning for a family can be challenging – and if you have IBD, there are additional factors you may need to consider. For women with IBD, one of the greatest known risks to pregnancy is a flare, so it’s super important for patients to communicate with their doctors regarding specific medications and treatment plans before and during pregnancy to ensure a safe and healthy pregnancy.

At the end of the day, healthy moms are more likely to deliver healthy babies. In fact, among women with Crohn’s disease and ulcerative colitis whose disease is in remission and who have never had surgery, fertility rates are equal to those of the general population. And treating IBD with the appropriate medication without interruption has been shown to reduce flares, decrease disease activity, and result in  fewer postpartum flares.

Quinn turns 5 years old in just a few months, and I feel like I know more now about IBD and pregnancy than I ever did when considering starting a family. Back then, there really wasn’t a ton of information available – and we all know how things with Dr. Google can go. Of course, I had my specialty care team to consult with, but I didn’t always feel like we were all on the same page.

Will I be able to become pregnant?

Will pregnancy make my IBD worse?

Are biologics safe to take during pregnancy?

If my IBD goes into remission during pregnancy, should I stop taking my medications?

Will I pass IBD on to my baby?

Can I breastfeed while taking steroids?

Thinking back, I had so many questions related to pregnancy, medications, breastfeeding, and more that I wish I had known. My gosh, it would have made my experience (and anxiety!) so much better! That said, I’m beyond excited to share a new website that was launch today to provide patients with the medical facts about IBD and pregnancy.

The IBD Parenthood Project aims to address misperceptions and fears women with IBD and their providers experience throughout all phases of family planning (conception, pregnancy, and after delivery). Patients can find answers to common questions like:

• Can I get pregnant with IBD?
• Does IBD affect my fertility?
• Will I pass IBD on to my baby?
• Can I stay on medicine during pregnancy?
• What if I flare during pregnancy?
• Is it possible to have a vaginal delivery?
• Can I breastfeed while on medicine?
• Does my medicine change how I vaccinate my baby?

This initiative was a group effort – created by gastroenterologists, maternal-fetal medicine (MFM) sub-specialists and patients, and is led by the American Gastroenterological Association (AGA) with support from the Society for Maternal-Fetal Medicine, the Crohn’s & Colitis Foundation, and patient support network, Girls With Guts. The program is funded through support from UCB, a global biopharmaceutical company.

As part of this program, there’s a super helpful downloadable patient toolkit that features all sorts of helpful resources, including a list of key questions to ask your doctor as you’re thinking of becoming pregnant, a flow diagram outlining the various doctors typically involved in care, a guide to postnatal care, and GI and related specialist locators, among other tools. These tools are actually a direct response to survey findings that reported women with IBD want more and better information about managing their disease.

I’m really excited about these materials and wished they were available to me when Mal and I were thinking about starting a family. The value is so obvious, and I know these resources will serve so many women with IBD throughout all stages of family planning! Please share with anyone who might benefit from the IBD Parenthood Project!

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