IBD Parenthood Project: Getting Pregnant When You Have IBD
The New Year is often a time for resolutions, setting goals, and embarking on life-changes. For women with inflammatory bowel disease (IBD) who are considering becoming pregnant, however, the start of a new year can be a time of frustration, confusion, and fear about how their disease may impact their ability to have a healthy pregnancy. To change this, the American Gastroenterological Association (AGA) launched the IBD Parenthood Project. Jessica Caron and Dr. Uma Mahadevan joined EverydayFamily’s Shiloh Johnson to tell us more about the IBD Parenthood Project. See the full interview here:
Many women with IBD decide not to have children based on misconceptions about their disease and pregnancy. In fact, the number of women with IBD who are voluntarily childless is three times greater than that of the general population. For these women, one of the greatest known risks to a healthy pregnancy is an IBD flare, yet many are unsure of whether medication is appropriate to take during pregnancy. In fact, a recent survey by AGA of 286 women in the U.S. diagnosed with IBD who are trying to conceive, are pregnant, or have had a child in the past 12 months revealed:
- 65% disagreed or were unsure that IBD medications were safe to use during pregnancy.
- 57% have worried about medication harming their baby.
- Over half rarely or never discussed their diagnosis with their obstetrician/gynecologist (OB/GYN) during preconception planning.
Dr. Mahadevan explained that the most important step for women with IBD is to get informed. “With information comes power. [We] want her to understand her risks during pregnancy, understand that her disease should be under control, understand that medications can and should be continued during pregnancy and breastfeeding, and that she should talk to her doctors to make sure that all of her providers are on the same page and that she has a plan going into pregnancy.”
The IBD Parenthood Project is a joint care pathway by the American Gastroenterological Association and the Society for Internal Fetal Medicine. Both groups reached a consensus and are recommending what should be done at every step before, during, and after pregnancy for IBD patients. One of the greatest benefits this project is the downloadable toolkit. This downloadable patient toolkit will provide guidance, dispel fears, and educate around the proper planning and care required for healthy pregnancies and healthy babies in IBD patients.
Dr. Mahadevan emphasized that the main misconceptions women with IBD have are 1) that they cannot have children with IBD (they absolutely can have children!) and 2) that they have to stop taking their medication during pregnancy. This second misconception is very dangerous. Stopping medication during pregnancy can lead to disease activity, which is the biggest risk to the pregnancy itself.
Jessica agreed that she had been prey to these misconceptions herself. “I was concerned. Would I be able to have children? Could I have them safely?” And a primary concern was not just whether she could have a baby safely herself, but could she have a pregnancy that would keep her baby safe as well. In Jessica’s opinion, the toolkit has two great strengths: A fact list addressing a lot of common misconceptions, empowering women through knowledge, and a checklist to help ask the right questions when going to doctors.
Jessica said, “I didn’t have these tools available when I was getting pregnant, and I was up at night wondering about these things. Fears and misconceptions guided me in my decision-making, but these tools would have helped me and made the process more comfortable. In the end, when I followed evidence-based recommendations, I had a really typical pregnancy.”
This new online resource, launched in January 2019, will provide answers to common questions related to IBD and pregnancy, as well as a downloadable patient toolkit that features visual and patient-friendly information. Resources include easy-to-digest lists of key questions to ask your provider as you’re thinking of becoming pregnant, a flow diagram outlining the various HCPs potentially involved in a patient’s care, a guide to postnatal care, and provider locator tools. These tools are a direct response to survey findings that reported women with IBD want more and better information about managing their disease.
Visit www.IBDparenthoodproject.org for more information.