May 16, 2022 — When Lindsay S. learned she had inflammatory bowel disease at 24 years old, her first concern was how it might affect her plans to have a family and the potential impact on a child.
“Even when I was first being put on medication, I wanted to know what effect it would have on future children,” she says. “I was coming up on childbearing years, so I wanted to know if I got pregnant what could those meds do to a baby. I was pretty picky about what meds I wanted to start with.”
For answers to her questions, she didn’t turn to her obstetrician or even her primary care doctor. Instead, she relied on her gastroenterologist – Sunanda Kane, MD, an IBD specialist at the Mayo Clinic in Rochester, MN – to help her navigate living with ulcerative colitis, a form of IBD.
Fast-forward 10 years, and Lindsay and her husband now have two healthy boys, ages 2 and 3, and she has been able to manage her IBD.
“Dr. Kane was very helpful,” says Lindsay, who lives in Greater Rochester and asked to be identified by her first name only to protect her privacy. “Most of the OBs that I ran across freaked out about my taking these meds for my IBD. But Dr. Kane reassured me. That made all the difference for me.”
Women with IBD face several concerns related to their reproductive health decisions, from contraception to pregnancy to delivery. Research shows that IBD and certain drugs can impact fertility and pregnancy and pose risks for preterm birth and small gestational age.
Lindsay’s experience has become very common for women with IBD who have questions about pregnancy, family planning, and reproductive health. In a study, published in the journal Crohn’s & Colitis 360, lead author Traci Kazmerski, MD, and her colleagues at the University of Pittsburgh Medical Center found that women with IBD often worry about their reproductive health and typically turn to gastroenterologists for questions and concerns.
What’s more, many patients expect their gastroenterologist to start this conversation and that these specialists can play a critical role in helping women have healthy pregnancies, they said.
Kazmerski and her colleagues interviewed 21 women with IBD about their medical history and asked them questions about pregnancy, contraception, and family planning. The participants ranged from 12 to 16 years old when they were diagnosed with IBD.
At the time of the study, the women were 25 years old, on average. Five had been pregnant in the past, and 16 said they planned to have children in the future. Fifteen were being treated for Crohn’s disease, and six had ulcerative colitis (the most common forms of IBD). Thirteen were using contraception, and six women were taking multiple IBD medications.
During the interviews, Kazmerski and colleagues found:
- Women with IBD who had never been pregnant lacked reproductive health knowledge.
- Six were unaware of IBD’s potential impact on fertility, pregnancy, and related issues.
- Many lacked clarity on the role IBD might play in their choice of contraceptives and said they had not been properly advised on birth control options.
- Several said they were concerned about the heredity of their IBD, the risks of disease before giving birth, and the impact of their medications on a future pregnancy.
“I think these results highlight the importance of pediatric gastroenterologists and primary care providers comprehensively addressing reproductive health with every person with IBD,” says Kazmerski.
Such discussions “may be a major determinant in not only the decision, but also the ability, of these women to become pregnant,” the authors said.
Kane says the findings, which are in line with other research, confirm what she’s seen in her own practice and highlight the critical role a GI specialist can play in helping women with IBD deal with pregnancy and reproductive health.
“I’m not really surprised by these findings,” says Kane, who is also a professor of medicine at the Mayo Clinic with an interest in women’s health.
“I think it is absolutely in the appropriate wheelhouse of a gastroenterologist to talk about conception, fertility, and pregnancy. But they should do it in the context of the patient’s life in general and about their medications,” she says.
“A lot of women assume if we don’t talk about this that we don’t think it [pregnancy] is a good idea and/or that we think it’s unsafe. So, they’re going to get their advice from ‘Dr. Google’ or well-intentioned friends and family who may not understand the nuances.”
Kane says gastroenterologists may be more informed than other practitioners about reproductive health for women with IBD. This includes contraception, which is a concern for those who want to have children and are worried about the impact of IBD drugs on pregnancy.
For example, Kane says women taking the drug methotrexate “have to absolutely be on reliable birth control” because becoming pregnant while taking the drug is risky and can cause birth defects.
Kane also believes her patients with IBD may be more comfortable speaking with her about these issues than with an obstetrician or primary care doctor.
“There are data that oral contraceptives may actually cause IBD or exacerbate IBD, so I wouldn’t be able to tell you that Brand X is better than Brand Y,” she says. “That’s where I will tell a woman to talk to your gynecologist [to assess] the nuance of what is in the pill.”
IBD and Pregnancy: Myths and Facts
Kane says that many myths and falsehoods have raised undue concerns – and patients’ anxiety levels.
“Unfortunately, whatever gets posted on the internet stays there,” she says. “There are very old data that say if you have Crohn’s disease, you shouldn’t get pregnant, and that’s just not true.”
She also says that “IBD is not a genetic-inheritable disease. … Just because you carry those genes, it doesn’t mean that you’re going to get the disease. That’s not how it works.”
Also, IBD is not believed to cause congenital problems and birth defects, nor do pregnant women with IBD need to always stop taking their medication, she says.
“What will drive a complicated pregnancy is active disease,” Kane notes. “Women will stop their medicine because they’re afraid of the effect on the baby. But it’s actually their active disease that’s worse on a baby than medications.”
Vivian Huang, MD, director of the Preconception and Pregnancy in IBD clinical research program at Mount Sinai Hospital in Toronto, agrees that managing IBD with medication in pregnancy is critical to the health of the mother and the baby.
“Many patients are worried about taking medications preconception and in pregnancy,” she says. “They may not realize that active IBD is more harmful to pregnancy (increased risk of miscarriage, preterm birth, small for gestational age infants) than taking maintenance IBD medications,” with the exception of certain medications such as methotrexate or tofacitinib.
IBD in pregnancy increases the risk of miscarriage and preterm birth, Huang says.
Jessica Barry, MD, a pediatric gastroenterologist and women’s health specialist at the Cleveland Clinic in Ohio, says this “gap in education” for young women with IBD is perhaps the most critical issue for GI doctors to address with their patients.
“Unfortunately, there is a large gap in education of our patients, per reproductive health and sexual health and body image overall, especially starting for young women and progressing into adulthood,” says Barry.
“We can educate our patients, so they know that we are their resource, and we are there to help answer those questions.”
IBD: At a Glance
IBD is not a single disease, but a group of disorders that cause chronic inflammation, pain, and swelling in the intestines. The main types of IBD include:
- Crohn’s disease, which causes pain and swelling in the digestive tract. It can affect any part, from the mouth to the anus. It most commonly affects the small intestine and upper part of the large intestine.
- Ulcerative colitis, which causes swelling and sores in the large intestine (colon and rectum)
- Microscopic colitis, which causes intestinal inflammation detectable with a microscope
Up to 3 million Americans have some form of IBD. Although it affects all ages and genders, IBD most commonly occurs between the ages of 15 and 30.
IBD is not the same as irritable bowel syndrome (IBS), a type of digestive disorder whose symptoms are caused and treated differently than those of IBD. Irritable bowel syndrome doesn’t inflame or damage the intestines the way IBD does.
Research suggests three things play a role in the IBD: Genetics (1 in 4 people have a family history of the disease), an abnormal immune system response, and environmental triggers (such as smoking, stress, drug use, and depression).
IBD symptoms range from mild to severe and can flare suddenly. Patients who do not have symptoms are considered to be in remission.
IBD symptoms include:
- Belly pain, upset stomach, and loss of appetite
- Nausea and vomiting
- Diarrhea, constipation, and bowel urgency
- Gas and bloating
- Unexplained weight loss
- Mucus or blood in the stool
- Joint pain
- Vision problems and red, itchy, or painful eyes
- Rashes and sores
People with IBD have a higher risk of colon cancer as well as complications from anemia, narrowing or infection of the anal canal, kidney stones, liver disease, malnutrition, osteoporosis, and perforated bowel.
Medications can help control inflammation and symptoms.
In people with Crohn’s disease whose medications no longer work, surgery may be needed to remove the diseased bowel segment.