Inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, is a chronic autoimmune condition that affects the gastrointestinal (GI) tract. Autoimmune conditions happen when the immune system mistakenly attacks itself.
Crohn’s disease can lead to swelling and scarring of the intestines. The disease has periods of active symptoms (sometimes called flare-ups) and other periods of remission when symptoms subside. More than 1 million people in the U.S. live with Crohn’s disease.
Rachel Winter, MD, MPH, a Mass General Brigham gastroenterologist, describes how people with Crohn’s disease can take steps before and during pregnancy to reduce their risk of health problems. Dr. Winter cares for patients at Brigham and Women’s Hospital.
“Many patients with Crohn’s disease have successful pregnancies,” says Dr. Winter. “We encourage all of our patients to discuss with their providers when they are going to become pregnant. This way we can ensure they are in remission, are taking medications that are safe to continue during pregnancy, have a care team experienced in caring for pregnant individuals with IBD, and a plan for monitoring throughout pregnancy.”
If you have Crohn’s disease and you’re thinking about pregnancy, first talk to your primary care provider (PCP) and gastroenterologist, a doctor who specializes in the digestive system. They can help you build a team of specialists that work together to help ensure your condition is under control before you get pregnant. Flare-ups may happen during pregnancy. The risk of a flare-up during pregnancy decreases if you are in remission for at least 3 to 6 months before getting pregnant.
Staying healthy before pregnancy gives you the best chance of having a healthy baby.
A family history of Crohn’s disease can increase your risk of having a child that develops IBD. There is increased risk of Crohn’s disease in children born to a patient with Crohn’s disease. The risk increases if multiple family members are affected by IBD. No genetic test exists to predict whether a child will develop IBD.
Your health care team may include these and other specialists:
An obstetrician-gynecologist (OB/GYN), for general pregnancy and birth care
A gastroenterologist, for Crohn’s-specific care
A maternal-fetal medicine (MFM) specialist, for special care of complex health conditions during pregnancy
Your OB/GYN cares for you during routine prenatal care checkups and works together with other specialists to ensure you get needed checkups or tests during your pregnancy. We encourage all patients to have a consultation with an MFM specialist before they're pregnant or early in their pregnancy.
“We advise all patients to be closely monitored by both their gastroenterologist and OB or MFM specialist throughout pregnancy,” says Dr. Winter. “It is important to monitor symptoms and evaluate for disease activity. Patients may experience gastrointestinal symptoms during pregnancy that are not because of Crohn’s, and we follow patients closely to treat those symptoms and also evaluate whether they are due to flares or inflammation.”
A gastroenterologist helps you manage Crohn’s symptoms and consults with your care team on how these could affect your pregnancy or birth. Your gastroenterologist may want to see you at least once during your first or second trimester for a checkup. "We also encourage patients to have a checkup in their third trimester so we can discuss delivery recommendations," says Dr. Winter. "This should be a discussion between the gastroenterologist, obstetrician, or maternal fetal medicine specialist, and patient."
Typical symptoms of active Crohn’s disease include:
Abdominal pain or cramping
Diarrhea
Weight loss
Fatigue
Severe Crohn’s flare-ups can also include extreme inflammation (an immune response in the body that can cause pain and swelling), diarrhea, dehydration, and bleeding from your intestines.
Other, less obvious symptoms can also indicate a Crohn’s flare-up. Tell your doctors if you experience any of the following during pregnancy:
Fever
Joint pain or soreness
Loss of appetite or nausea
Redness or pain in the eyes
Tender red bumps under the skin or new skin lesions, or rashes
Maternal-fetal medicine specialists have special training in caring for pregnant patients with chronic health conditions. They deliver the babies of patients with Crohn's who’ve had pelvic or abdominal surgery, have fistulas (abnormal connections between organs that can form after injuries or surgeries or from inflammation), or have scarring of the perineum (the area between the anus and the vulva) due to past Crohn’s flare-ups. They also follow patients who are taking medications that can affect their immune system.
If you’re planning for pregnancy, or are pregnant, here’s what you can do:
Staying in remission is a key factor both in becoming pregnant and maintaining a healthy pregnancy. According to NIH, people who are able to plan for pregnancy should delay getting pregnant until they’re in remission and have optimal nutrition.
During Crohn’s remission, you have the same chances of a healthy pregnancy as those without the disease. If your Crohn’s disease is active, it can be more difficult to get pregnant or stay pregnant. Having active Crohn’s disease increases the risk of pre-term birth.
To keep your Crohn’s in remission, take your prescribed medications before and during pregnancy. Most medications for IBD don’t impact the ability to get pregnant and most medications are safe to continue during pregnancy. If you’re planning to become pregnant, review your medications and the safety of your medications with your doctor. If you’re on a medication that can’t be continued during pregnancy, your gastroenterologist can discuss alternative options with you.
If you experience a Crohn’s flare-up while pregnant, you may need additional testing or treatment. There are many ways to assess for inflammation during pregnancy including labs, stool tests, imaging, and endoscopy if needed.
Don’t start or stop taking any medications without talking to your providers first. Most Crohn’s medications are safe to take during pregnancy and chestfeeding. Findings from the U.S. National Library of Medicine LactMed database suggest that most medications prescribed for IBD are either undetectable in chest milk, or in too low of a concentration to cause harm.
Doctors may recommend patients discontinue some medications, including drugs that can cause birth defects, such as methotrexate and thalidomide. Some of the newer oral medications for Crohn’s disease also aren’t safe to take during pregnancy. Patients must discontinue these drugs prior to getting pregnant, so it’s important to let your doctor know when you plan to try to conceive.
Most of the drugs available to treat Crohn’s disease aren’t linked to adverse pregnancy outcomes. Doctors advise patients to continue their medications throughout pregnancy because remaining in remission throughout pregnancy minimizes the risk of pregnancy complications.
For all patients, regardless of the medications they take, Dr. Winter recommends IBD and maternal or fetal monitoring during pregnancy including:
Labs during every trimester
Routine pregnancy care with ultrasounds as recommended by your OB or MFM
Nutrition labs, including iron and vitamin B12 levels. Dr. Winter advises all pregnant patients take a prenatal vitamin. Some patients may need additional folate supplementation.
Counseling regarding recommended vaccines for the baby. Experts recommend avoiding live vaccines for 12 months in infants with exposure to biologics in the womb. In the United States, this includes rotavirus vaccine. Biologics are medicines designed to suppress parts of the immune system.
Follow-up appointments for both pregnant patients and their children are important to continue after birth and during chestfeeding.
Most pregnant patients have blood tests throughout their pregnancies to monitor for:
Anemia, or lack of red blood cells
Basic nutrition
Since people with Crohn’s are at a higher risk for malnutrition, which can affect a developing baby, you may need extra testing to check that you’re getting enough nutrients. Your health care providers may recommend you take supplements to meet your nutrition needs.
You may receive specific testing for:
Vitamin D
Vitamin B12
Iron
Folate
Doctors also monitor your overall weight gain. Your providers may connect you with a dietitian who can help ensure you get the right nutrients and gain a healthy amount of weight.
People with Crohn’s disease are more prone to developing blood clots. These clots can become lodged in blood vessels and lead to several health issues during pregnancy, including heart attacks and strokes.
According to the Centers for Disease Control and Prevention (CDC), signs and symptoms of blood clots include:
Difficulty breathing
Rapid or irregular heartbeat
Chest pain, discomfort, or pain while taking a deep breath or coughing
Coughing up blood
Very low blood pressure
Lightheadedness or fainting (loss of consciousness)
Swelling or pain in the leg or calf
Oral birth control pills can further elevate the risk of blood clots, especially in patients with IBD. Talk to your health care provider about your risk for clots if you plan to take birth control pills after pregnancy. They may recommend using pills without estrogen or a low-dose estrogen birth control, to lower the risk of developing blood clots.
There is still much debate among doctors and researchers as to whether and how Crohn’s disease affects a baby. The condition may increase the risk for:
Low birth weight (less than 5 pounds, 8 ounces)
Premature birth (before 37 weeks of pregnancy)
Stillbirth, when a baby dies in the womb after 20 weeks of pregnancy
Remaining in remission throughout pregnancy decreases the risk of having a complication during pregnancy.
Some studies suggest that Crohn’s puts the pregnant patient at a higher risk for diabetes in pregnancy (also known as gestational diabetes) or preeclampsia. Still others have shown that there is no increase in risk to a baby born from a patient with Crohn’s when compared to a patient without the condition. Your OB or MFM specialist test for gestational diabetes as part of routine pregnancy care.
As a precaution, doctors recommend that if you’re pregnant and have Crohn’s disease, you be followed closely by your obstetrician. Patients with Crohn’s disease can have a vaginal birth, but doctors recommend cesarean birth (c-section) for patients with active perianal disease and for those with previous scarring of the perineum or perianal fistulas due to Crohn’s flare-ups. We recommend that you have a conversation and physical exam with your gastroenterologist and obstetrician in the third trimester in order to discuss a delivery plan.
While active Crohn’s disease may make both getting and being pregnant more difficult, being pregnant could reduce the likelihood of a Crohn’s flare-up.
Some research suggests that being pregnant makes flare-ups less likely.
Crohn’s disease is difficult whether or not you’re pregnant or planning to become pregnant.
Although there is no definitive cause for Crohn’s, Mass General Brigham researchers are studying genetic factors, immune system defects, and the role of the gut microbiome as promising leads. We also have multidisciplinary teams to provide care for all patients with Crohn’s disease.
Crohn’s disease has no cure, but there are effective medications and treatments available for managing the condition. Every year, new clinical trials advance the study of Crohn’s disease and other complex autoimmune conditions. Each new treatment or medication brings doctors one step closer to a cure.