Approximately 1.6 million people in the United States have IBD, a group of disorders of the digestive tract, including Crohn’s disease and ulcerative colitis. Of these individuals, about one-half are women who will consider getting pregnant one day.

But 3 times more women with IBD choose not to have children than women in the general population. Experts say a major reason for this is that many women falsely believe they are unable to get pregnant or they believe that it would be unhealthy or too risky to have a baby with Crohn’s or ulcerative colitis. But data from the American Gastroenterological Association (AGA) published in April 2019 in the journal Gastroenterology showed that for women with IBD whose disease is in remission and who have never had surgery, fertility rates are equal to those of the general population. Still, there are barriers to care for this population.

Misinformation abounds about the safety of IBD medication during pregnancy and breastfeeding.

“As with any medication, this comes from the general fear of having complications and side effects,” says Rajeev Jain, MD, a gastroenterologist at Texas Digestive Disease Consultants in Dallas and project cochair of the AGA’s IBD Parenthood Project.

Most research studies evaluating the safety and effectiveness of medication aren’t done in pregnant women, he explains, for fears of long-term side effects.

“So we’re taking care of patients where there is a dearth of scientific data, so we tend to reflexively take what we might think is the safer alternative to not expose the patient or babies to drugs. But in reality, for the majority of medications we use to treat IBD, the science we do have is good observational data that shows it is safe for mothers with IBD during pregnancy to take those meds and have good outcomes,” Dr. Jain says.

He notes that first and foremost, for a pregnant woman with IBD to have a successful pregnancy and healthy baby, the woman needs to be healthy. For this to happen, medication is usually needed.

"We know that controlling their Crohn’s disease or ulcerative colitis will give them a much better chance of being fertile and having successful conception and pregnancy,” Jain says.

Unfortunately, misinformation about the safety of IBD medication during pregnancy is also common among healthcare professionals. This can lead to more difficulties for women with IBD.

Jessica Caron was 21 when she was diagnosed with Crohn’s disease and has since had two successful pregnancies. She recalls having nurses who questioned her decisions to stay on her medication while pregnant.

“I was questioned about the treatment decisions I had made with my gastroenterologist,” Caron says. “Luckily, I felt confident in the decisions I was making so I felt comfortable articulating how important it was.”

Experts say this line of questioning, although well-meaning, can sometimes cause significant guilt in women that can lead to psychological damage and affect their health.

Another barrier to care comes when the woman is ready to give birth, with many women with IBD receiving unnecessary C-sections. According to a study published in January 2014 in the journal Expert Review of Clinical Oncology, the C-section rate for women with IBD has been reported to be as high as 44 percent. This is much higher than the C-section rate for the general population, which is about 32 percent, according to the Centers for Disease Control and Prevention. What’s more, studies suggest that the majority of C-sections are due to patient or physician preference rather than true medical need, Jain says.

“As a country, we do way more C-sections compared with the rest of the world. We’re overdoing it. And that is also true of GI patients with inflammatory bowel disease,” he says. “Of course, some patients will need a C-section for medical reasons, but if a patient is in complete remission, has no prior GI surgeries and is doing well, and if there’s no other contraindication to vaginal delivery, the diagnosis of IBD is not a red flag that means you must have a C-section.”

Having a Successful Pregnancy With IBD

The AGA is working to educate doctors and all healthcare professionals on the unique challenges of having a baby with IBD, clear up misconceptions about the safety of medication during pregnancy, and better equip them to administer optimal care.

It also created the IBD Parenthood Project for patients, to help them become their own health advocates. Experts recommend the following advice for a successful pregnancy with IBD:

Plan Ahead

When Jessica Caron was first diagnosed with Crohn’s, having a baby was not yet on her radar. But once she decided she wanted to have children, talking to her doctor well before she planned on getting pregnant helped her have the healthiest pregnancy possible.

“I needed to get into remission and that takes time,” she says. “I needed to find a medicine that would help my body get there and also needed to pay attention to my nutrition and iron levels, and any co-occurring issues that might happen with IBD. It was important that I really took the time to understand how I could get my body best prepared to be able to carry a baby.”

Arm Yourself With Knowledge

Misinformation about the safety of IBD medication during pregnancies can lead to a lot of well-meaning but wrong advice. This can take its toll on many women. “When you’re carrying a baby, anything and everything you do not only affects you, but also affects the baby. That’s a lot of pressure,” says Caron. “So if your social network is constantly bombarding you with these questions and advice that they think is right, even though it’s not, it’s easy for the woman to take that as true.”

The antidote is to educate yourself and be prepared with answers. “I think it’s really important for women to feel really confident and comfortable in their treatment plans and decisions and feel empowered to advocate for themselves if others question,” Caron says. Of course, women should also be comfortable bringing any questions they are not sure about to their gastroenterologist.

If Possible, Get a Maternal-Fetal Medicine (MFM) Specialist

An MFM is an obstetrician with additional years of education and is trained in taking care of women with complicated or high-risk pregnancies. An MFM can determine both the type of monitoring you need throughout the course of your pregnancy and the frequency of your prenatal visits with healthcare providers. Your gastroenterologist will work closely with your MFM throughout your pregnancy.

Gather a Full IBD Care Team

Unfortunately, due to variations in access and availability, an MFM may not be an option for many women with IBD who are pregnant or looking to become pregnant. If this is the case, you can schedule an appointment with your gastroenterologist, ob-gyn, or specialized nurse practitioner, physician’s assistant, or midwife so they can all work together to follow the plan of care that best suits your needs.

Other providers to think about making part of your care team include a nutritionist, psychologist, lactation specialist, and pediatrician once your baby is born.

Have a Strong Support Network

While having the right medical team is important, having a strong support network is also extremely valuable. Caron says having her friends, family, and partner on board with her treatment plan and decision-making was vital to her successful pregnancies.

Connecting with other women with IBD can also be helpful. “I didn’t know anyone else with Crohn’s disease back when I was pregnant, and I wish that I did,” Caron says. “So I would encourage women to reach out and find other women and connect with them. There are a lot of us who are more than happy to share our experiences throughout the process.”