Women with Crohn’s choose not to have children for a variety of reasons, such as being concerned about how pregnancy will affect their symptoms or how their disease will affect their baby’s health. But sometimes misinformation contributes to these decisions, too, says Sonia Friedman, MD, associate professor of gastroenterology, hepatology, and endoscopy at Harvard Medical School in Boston. “A lot of women are worried about their medications during pregnancy and their Crohn’s disease during pregnancy,” says Dr. Friedman. “But honestly, most of the medications are safe, and as long as she is in remission three to six months before getting pregnant, usually it’s fine and she won’t flare during pregnancy.” If you have Crohn’s disease and want to become pregnant, talk to your healthcare providers right away. They can talk to you about any concerns you might have and tell you what precautions to take and what to consider before having kids. Here’s what you should know.
- Crohn’s might affect your fertility — but it might not. If you’ve had a proctectomy or J-pouch surgery for Crohn’s, you could have scarring that affects your fallopian tubes and reduces fertility, says Friedman. Fertility can also be reduced during a Crohn’s flare. However, if you have well-controlled Crohn’s disease that has not required surgery, you are about as likely to get pregnant — or just slightly less likely — as a woman without Crohn’s, according to the 2016 study.
- It’s important to plan ahead. For the safest possible pregnancy, you should be flare free for three to six months before you conceive. “I think the most important message is that if a woman with IBD is interested in getting pregnant, she should have that discussion with her healthcare providers as soon as possible to ensure that her Crohn’s is in remission on a stable medication regimen that can be continued throughout pregnancy,” says Geoffrey C. Nguyen, MD, PhD, a professor of medicine at the University of Toronto. Your doctor may also recommend a few tests, such as a colonoscopy, before pregnancy. If you are considering pregnancy, start taking prenatal vitamins.
- Many medications can be safely continued during pregnancy, but a few cannot. Methotrexate and tofacitinib are not safe for use during pregnancy, according to the U.S. National Library of Medicine, so if you take either of those and want to become pregnant, your doctor will likely recommend that you switch to another option about three months before conception. However, most other Crohn’s medications can be safely taken during pregnancy, and it’s important to continue therapies that are stabilizing your disease. “Do not stop any therapy without talking to your treating provider first, as it may cause a flare and complicate a pregnancy,” says Sunanda V. Kane, MD, a gastroenterologist at the Mayo Clinic in Rochester, Minnesota. In April this year, the American Gastroenterological Association’s IBD Parenthood Project Working Group released a set of guidelines for treatment of women with IBD who are considering pregnancy. Ask your doctor if he or she follows them. Shirley Florence, a 57-year-old from Idaho, was diagnosed with Crohn’s disease 30 years ago, shortly after she had her second child. Her doctor advised her not to have more children while she was taking the medication she was prescribed at the time, prednisone. Today, there are safer medications to use if you want to become pregnant. (Prednisone is still generally not recommended in pregnant women with Crohn’s unless they are having an active flare.)
- If you flare during pregnancy, your risk of complications increases. Flares can increase your risk of miscarriage, preterm delivery, and having a baby that’s smaller than expected for their age. “The most important thing for women to do is to be adherent to the IBD medications their healthcare providers prescribe and to seek care at the earliest signs of a flare, so it can be promptly managed,” says Dr. Nguyen. If you do become pregnant and experience a flare, your healthcare provider may recommend aggressive treatment, such as a course of steroids, says Friedman. A person with a severe flare may require hospitalization and IV fluids and antibiotics to keep the inflammation under control. Melodie Narain-Blackwell, a 37-year-old from the DC metro area, was diagnosed with Crohn’s disease in October 2018, after three surgeries and disruptive symptoms. In February 2019, she unexpectedly became pregnant, just three weeks after starting treatment. Three months later, she had a miscarriage, but she is not discouraged. (About 10 to 20 percent of known pregnancies end in miscarriage, according to the Mayo Clinic, and that number is likely higher when you consider most miscarriages occur before a woman even knows she’s pregnant.) Narain-Blackwell has a 5-year-old son, and she suspects that she probably had undiagnosed Crohn’s disease when she was pregnant with him. “If you desire to have a child, do not let Crohn’s disease impair you from that,” she says. She recommends working on your mental health to help you manage Crohn’s, pregnancy, or both.
- It’s important to educate yourself before making this decision. “Pregnancy is a very personal decision, and there are specialty clinics for counseling on just this topic,” says Dr. Kane. “I recommend that any woman who does not feel like she understands all the issues should be seen in one [of these clinics].” Amy Orr, a 34-year-old from Southwestern Ontario, has been battling Crohn’s disease since she was 10 years old, and it took a long time to find the optimal treatment regimen. She used to have low energy and needed to use the bathroom 10 to 12 times a day, but for roughly the past decade, Orr’s symptoms have been stable. Now, she is reluctant to make changes that could risk her hard-won stability. “It’s always been a very fragile balance,” she says. “If I change something, then my Crohn’s massively reacts, and it feels massively out of proportion to the scale of the change that I’ve made.” Orr and her husband sought counseling and talked to specialists before deciding whether to conceive. She has other autoimmune issues in addition to Crohn’s and would need to change some of her medications to become pregnant. If she conceived, it would be a high-risk pregnancy. Ultimately, she and her husband decided not to pursue a natural pregnancy and instead are adopting. “I think there are a lot of factors to consider, like what your symptoms are like now and what you’re prepared to accept to get pregnant and to stay pregnant and have a healthy pregnancy,” she says. Talking with your doctors is an important part of this process.
- You may pass on some genes that increase a child’s risk of Crohn’s disease, but that risk could be lower than you think. As with many health problems, genes may play a role in IBD, but don’t assume that if you have a child, they will automatically inherit Crohn’s. According to the National Human Genome Research Institute, the chance of a child developing Crohn’s if one parent has it is about 7 to 9 percent; if both parents have IBD, the risk jumps to 35 percent. “It’s still not anywhere near 100 percent,” says Kane. “I would not hold off on having children just because you have Crohn’s disease, in my opinion,” says Florence. She says her kids have been a blessing, even if it was challenging to keep up with two little boys while managing the pain and disruption of Crohn’s. How did she manage? She stopped trying to control everything in her life. “I had to learn to let little things go and not care if somebody’s fighting or not getting along,” she says. “I had to let them learn to handle it themselves.”
- If you become pregnant, you may need to plan for special care during delivery. During pregnancy, you’ll need to consult closely with your gastroenterologist and your obstetrician/gynecologist. It’s also wise, especially if you have severe Crohn’s, to see a maternal-fetal medicine specialist, says Friedman. These doctors are ob-gyns with two to three years of additional training and expertise in high-risk pregnancies. Some women with Crohn’s disease need special considerations and the involvement of a maternal-fetal medicine specialist during delivery. For example, women who have had fistulas may not be candidates for a C-section, and vacuum-assisted or forceps-assisted delivery may not be appropriate for women with perianal complications, because nonhealing wounds or fistulas could develop.