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Pregnant and suffering from IBD?  Help from a GI Doc can be crucial


May 16, 2022 — When Lindsay S. learned she was suffering from inflammatory bowel disease at age 24, her first concern was how it might affect her plans to start a family and the potential impact on a child.

“Even when I started taking medication, I wanted to know what effect it would have on future children,” she says. “I was of childbearing age, so I wanted to know if I got pregnant, what would these drugs do to a baby. I was pretty picky about which drugs I wanted to start with.

To obtain answers to her questions, she did not turn to her obstetrician or even to her general practitioner. Instead, she relied on her gastroenterologist — Sunanda Kane, MD, an IBD specialist at the Mayo Clinic in Rochester, MN — to help her live with ulcerative colitis, a form of IBD.

Fast forward 10 years, 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. idea that I take these medications for my IBD. But Dr. Kane reassured me. It made all the difference for me.

Women with IBD face several concerns related to their reproductive health decisions, from contraception to pregnancy to childbirth. Research shows that IBD and certain medications can impact fertility and pregnancy and pose risks of premature birth and low 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 and Colitis 360Lead 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 with questions and concerns.

Additionally, many patients expect their gastroenterologist to start this conversation and that these specialists can play a vital role in helping women have healthy pregnancies, they said.

Kazmerski and her colleagues interviewed 21 women with IBD about their medical histories and asked them questions about pregnancy, contraception and family planning. The participants were between the ages of 12 and 16 when they were diagnosed with IBD.

At the time of the study, the women were on average 25 years old. 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 his colleagues found:

  • Women with IBD who had never been pregnant lacked reproductive health knowledge.
  • Six were unaware of the potential impact of IBD on fertility, pregnancy and related issues.
  • Many lacked clarity about the role IBD might play in their choice of contraceptives and said they had not been properly counseled on birth control options.
  • Several said they were concerned about the heredity of their IBD, the risks of pre-delivery illness, and the impact of their medications on a future pregnancy.

“I think these findings underscore the importance for pediatric gastroenterologists and primary care providers to comprehensively address the reproductive health of each person with IBD,” Kazmerski says.

Such discussions “may be a major determinant not only of the decision, but also of these women’s ability to become pregnant,” the authors said.

Kane says the findings, which are in line with other research, confirm what she has seen in her own practice and underscore the critical role a gastrointestinal specialist can play in helping women with IBD cope. pregnancy and reproductive health.

“I’m not really surprised by these results,” says Kane, who is also a Mayo Clinic professor of medicine with an interest in women’s health.

“I think it’s absolutely in the proper 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 their medications,” she says.

“A lot of women assume that if we don’t talk about it, we don’t mean it. [pregnancy] is a good idea and/or we think it’s dangerous. So they’re going to seek advice from ‘Dr. Google’ or well-meaning friends and family members who may not understand the nuances.

Kane says gastroenterologists may be more knowledgeable than other practitioners about the reproductive health of women with IBD. This includes contraception, which is of concern to people who want to have children and are concerned about the impact of IBD medications on pregnancy.

For example, Kane says that women taking the drug methotrexate “absolutely need to take a reliable contraceptive” because getting pregnant while taking the drug is risky and can cause birth defects.

Kane also thinks her patients with IBD may be more comfortable discussing these issues with her than with an obstetrician or primary care physician.

“There is data that birth control pills can actually cause or exacerbate IBD, so I wouldn’t be able to tell you that brand X is better than brand Y,” she says. “This is where I would tell a woman to talk to her gynecologist [to assess] the nuance of what’s in the pill.

IBD and Pregnancy: Myths and Facts

Kane says many of the myths and fallacies have raised undue concern – and patient anxiety levels.

“Unfortunately, anything that gets posted on the internet stays there,” she says. “There is very old data that says if you have Crohn’s disease you shouldn’t get pregnant, and that’s just not true.”

She also says that “IBD is not an inherited genetic disease. … It is not because you carry these genes that you will catch the disease. That’s not how it works.

Also, IBD isn’t thought to cause birth problems and birth defects, and pregnant women with IBD don’t need to always stop taking their medications, she says.

“What will lead to a complicated pregnancy is active disease,” notes Kane. “Women stop their treatment because they are afraid of the effect on the baby. But it’s actually their active disease that’s worse for a baby than the drugs.

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 medications during pregnancy is critical to the health of the mother and baby.

“Many patients worry about taking medication before conception and during pregnancy,” she says. “They may not realize that active IBD is more harmful to pregnancy (increased risk of miscarriage, premature birth, small for gestational age infants) than taking maintenance IBD medications,” to except for certain drugs such as methotrexate or tofacitinib.

IBD during pregnancy increases the risk of miscarriage and premature delivery, Huang says.

Jessica Barry, MD, a pediatric gastroenterologist and women’s health specialist at the Cleveland Clinic in Ohio, says this “education gap” for young women with IBD is perhaps the biggest problem. critical issue that gastrointestinal physicians must address with their patients.

“Unfortunately, there is a big gap in the education of our patients, in terms of reproductive health, sexual health and body image in general, especially from young women and into adulthood,” says Barry.

“We can educate our patients, so they know we are their resource, and we’re here 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 often affects the small intestine and the 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 under a microscope

Up to 3 million Americans have some form of IBD. Although it affects all ages and genders, IBD most often 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 from those of IBD. Irritable bowel syndrome does not inflame or damage the intestines like IBD does.

Research suggests that three things play a role in 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, drinking drugs and depression).

Symptoms of IBD range from mild to severe and can flare up suddenly. Patients without symptoms are considered to be in remission.

Symptoms of IBD include:

  • Belly pain, upset stomach and loss of appetite
  • Nausea and vomiting
  • Diarrhea, constipation and intestinal urgency
  • Gas and bloating
  • Unexplained weight loss
  • Mucus or blood in the stool
  • Fatigue
  • Fever
  • Articular 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 intestinal perforation.

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.


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