At the age of 21, Natalie Hayden began experiencing extreme stomach pain, weight loss, and high fevers. Being her last year of college, she was preparing to enter the workforce as a television news anchor. But soon, that dream would be put on hold, at least for a short period of time. Because after many tests, she was diagnosed with inflammatory bowel disease (IBD), which would complicate her pregnancy years later.
“It really was a learning experience from the start because you really have a lot to learn when you’re given a disease for which there’s no cure,” Hayden tells Romper of her Crohn’s disease diagnosis via phone. “It’s a complicated illness so it’s different for every single person.”
What would this mean for her career? And even further, what would this mean for her lifelong dream of becoming a mother? Could she still have children and a healthy pregnancy?
Many recently diagnosed women ask themselves similar questions. Despite the fact that Inflammatory Bowel Disease affects 1.6 million people in the United States, per Digestive Diseases and Sciences — and over 50 percent of them are women — those without a family history of IBD (which includes Crohn’s disease and ulcerative colitis) are unaware of its effects. That’s why professionals and patients came together to create the IBD Pregnancy Project, an online information platform for those impacted by the disease.
I had heard from one nurse practitioner that it can take longer if you have Crohn’s disease to get pregnant, but as long as I was in remission, it could be OK. It was confusing.
“There’s a lot of misinformation for both providers and patients out there,” says Dr. Uma Mahadevan, a professor of medicine at the University of California, San Francisco (UCSF) and medical director of the UCSF Center for Colitis and Crohn’s Disease. Dr. Mahadevan serves as a chair on the IBD Pregnancy Project and is excited to clear up many misconceptions about IBD that hopeful mothers have. These include: Having to completely stop taking your prescriptions and not being able to get pregnant in the first place.
“Women with IBD are three times more likely to choose to be childless [voluntarily]… and much of that is driven by fear of pregnancy,” Dr. Mahadevan tells Romper by phone. “And [another] major misconception is that they have to stop all their medicine to conceive or to breastfeed and that is actually a dangerous one because then their disease may flare and that’s actually the biggest risk to the pregnancy.”
Flaring during pregnancy can sometimes be unpreventable, however, causing another layer of worry for expecting mothers. Laura Galloway Caldwell, a mother from Denver, Colorado, took every precaution possible, continually checking in with a high-risk OB-GYN and gastroenterologist while trying to conceive.
“It was kind of unclear — I had heard from one nurse practitioner that it can take longer if you have Crohn’s disease to get pregnant, but as long as I was in remission, it could be OK. It was confusing; It was confusing to know what the outcome could be….
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