Women with inflammatory bowel disease (IBD) are 3 times more likely to forgo having children than people without the condition - it's a trend driven by fear and confusion about what the disease would mean for their pregnancies and newborns.
Until now.
Millions of women globally are living with IBD, an umbrella term for conditions like ulcerative colitis or Crohn's disease that cause swelling and inflammation in the digestive tract. Symptoms can include stomach pain, diarrhea, extreme fatigue, and weight loss. In some cases, the disease can lead to disability and life-threatening complications. Pregnant people with IBD are also at an increased risk of miscarriage and pre-term birth.
UC San Francisco Professor of Medicine Uma Mahadevan , MD, is the director of Colitis and Crohn's Disease Center at UCSF. She is also the Lynne and Marc Benioff Endowed Chair in Gastroenterology.
In 2021, Mahadevan and her team published the results of the largest study of its kind, called PIANO. It showed that women could safely take the most common IBD medications throughout pregnancy without any complications for them and their babies. Based on these and other findings, Mahadevan helped draft the world's first guidelines on IBD and pregnancy , which were recently released.
She tells us what families should know.
Are women with IBD considered high-risk pregnancies?
Yes, and it's historically been hard to convince obstetricians of this. They see a 27-year-old pregnant woman with no other medical problems or in IBD remission and can't understand why gastroenterologists like myself are insisting she be treated as a high-risk pregnancy.
Even if they're in remission, women with IBD still have increased risk of miscarriage; preterm birth; and complications from labor and delivery, like preeclampsia. We think this has to do with changes in the placenta, and that's one of the studies that we're collaborating on with world-famous UCSF placentologist Susan Fisher, PhD, professor of Obstetrics, Gynecology and Reproductive Sciences.
Why is so much confusion around IBD and pregnancy?
When a patient has a chronic medical condition, let's say multiple sclerosis or inflammatory bowel disease, they see a specialist; but that specialist doesn't generally deal with pregnancy - obstetricians do.
Historically, pregnancy scares physicians who aren't obstetricians because there's a fear of somehow harming the fetus. To avoid that, physicians tended to withdraw the IBD medications that kept mothers healthy during pregnancy. Sometimes, they would also counsel women, unnecessarily, against getting pregnant for fear of complications.
Why didn't that work?
When you sacrifice maternal health, you sacrifice fetal health. If you have an immune-mediated disease and you're off treatment and inflamed, you're more likely to miscarry, have a preterm birth, and have complications during labor and delivery.
How did your work lead to the world's first global guidelines on IBD in pregnancy?
Our study at UCSF proved that continuing medication was best for women and best for their babies, so that's really the paradigm change. The beauty of the global consensus is that we had nearly 50 experts from every content - patients, maternal-fetal medicine specialists, colorectal surgeons, teratologists, gastroenterologists, lactation specialists - so that everybody was included and had a voice.
What are the biggest myths these new global guidelines address?
The biggest myth is that pregnant women with IBD should stop their medication during pregnancy. If they're on monoclonal antibody treatment, or what are called biologics, women should continue it throughout pregnancy and breastfeeding, no question. Oral medication can be more tricky.
The second biggest myth is that a woman with IBD can't vaccinate their child if they are on a biologic medication and breastfeeding. That's not true.
Thirdly, it's untrue that everyone with IBD has to deliver via caesarean section. Most women with IBD can have successful vaginal deliveries. Some women with active perianal disease at the time of delivery, or who have a history of recto-vaginal fistula - or if they have had J-pouch procedure - they should consider a C-section. A J-pouch is a pelvic surgery done to create a pocket for stool to pass through in patients who have had their colon removed.
For everyone else, it's really a conversation between the obstetrician and patient.
And the PIANO study is still working to improve women's lives?
That's right. There are 2,500 women in the U.S. who have enrolled and who are on multiple medications. Through the study, we have the infrastructure to enroll women on newer medications that have just come onto the market. For that reason, we're usually the first to report on the safety of these medications in pregnancy, including how or if they pass from mother to fetus via the placenta.
Women with IBD can enroll to take part in our study and help to improve care for women around the world.
If a drug has been approved for use, why is there a need for that kind of safety reporting?
When researchers and pharmaceutical companies study a new medication in clinical trials, if a woman becomes pregnant within those trials, she often has to stop the new medication - partly because researchers are still evaluating the drug's safety. It's one reason that pregnant women are underrepresented in clinical trials and data.
But once that medication is approved, it's out in the world without any safety data in pregnant women - that's where PIANO comes in. We often provide that very first safety data for new drugs in IBD.
