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Crohn’s Disease & Family Planning

In the middle of a chilly night in January 2009, then 26-year-old Beth Smith awoke with a severe, surging sensation in her lower abdomen. She assumed that her appendix had burst, but upon arrival at the hospital, a scan revealed that Beth had Crohn’s disease, a chronic condition involving the gastrointestinal (GI) tract. The Crohns & Colitis Foundation of America (CCFA) describes the ailment as a type of Inflammatory Bowel Disease (IBD), which most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but can affect any part of the GI tract, from the mouth to the anus.

“In hindsight, I had experienced symptoms, including bowel inconsistencies, since I was about 20. But bathroom issues are not exactly a topic that people are comfortable discussing, even with their physician,” recalls Beth, whose diagnosis fell within the typical onset range ─ ages 15 to 35. The Center for Disease Control estimates that as many as 1.4 million people in the United States suffer from IBD, including the 700,000 diagnosed with Crohn’s. While the exact cause of this disease is not known, research suggests that heredity and environmental factors may increase risk.

In addition to dietary adjustments, including the limitation of spicy and high-fiber foods, Crohn’s is commonly treated with immunosuppressant medications. Under the care of Dr. Henry Levine, founding physician of the Center for Digestive Health in Orlando, Beth began receiving infusions of Remicade (also known as infliximab) every 7 to 8 weeks. Within three months, she gained twenty pounds on her previously frail frame. “I understand now that my body was not properly absorbing nutrition and Dr. Levine saved my life,” Beth declares, though admitting to temporarily experiencing mild ‘body dysmorphia’ because of the rapid physical change to her figure.

While Beth describes Remicade as her “kryptonite against Crohn’s,” she faced two additional hospital stays as a result of an intestinal obstruction and dehydration. “Crohn’s brings on periods of minor to severe flare-ups, but I try not to let these tough times rule my life.” Many patients also face other autoimmune related conditions which, in turn, present additional health challenges. “I have roaming inflammation which affects my joints, hands, elbows, and other areas of my body, and regularly see a rheumatologist.” The joint pain and, of course, Crohn’s itself, not only affects Beth, but can impact her family including interference with scheduled events. “Leading up to my wedding, I was so swollen that I didn’t know if I would even fit into my gown or be able to slide the wedding band onto my finger. There have been many nights when my husband, Phillip, literally had to carry me out of bed because I was crippled by pain.” But Beth says the most substantial concern surrounding Crohn’s in regards to her family, involved the necessary medical preparations to safely conceive and carry a child.

Dr. Levine emphasizes that, prior to pregnancy, it is imperative for women with Crohn’s to secure a high-risk obstetrician to provide care in partnership with a gastroenterologist who is knowledgeable of the potential effects of medications. If a woman’s IBD is in remission, her fertility should not be affected; as was the case with Beth who became pregnant within a few months of trying. “Crohn’s has been identified, however, to decrease fertility if a woman has scar tissue (from a reconstructive surgery) or she limits sexual activity because of perinatal disease,” says Dr. Levine. “Pregnancy during a flare-up increases the risk of miscarriage or stillbirth.” Furthermore, the drug methotrexate, though rarely used in the United States for the treatment of Crohn’s disease, can cause birth defects or even the spontaneous loss of a fetus. Prior to conception, men with Crohn’s also need to consult with a specialist about similar medication side effects, and the potential for low sperm count.

Dr. Levine says that three drugs commonly used to manage Crohn’s are FDA approved to administer during pregnancy, including Remicade, Humira, and Cimzia; however, Remicade and Humira should be discontinued in the third trimester (before the 32nd week for Remicade and the 34th week for Humira), to avoid risk of transfer through the placenta. Mothers with Crohn’s often need to evaluate nutritional supplements and vitamins, including folic acid (particularly if taking sulfasalazine, which inhibits folic acid absorption), and in some cases, increase levels of iron and B12.

“I was able to maintain a normal pregnancy and had already received my last Remicade treatment (at week 30) when, unexpectedly, my water broke at 31 gestational weeks. I was hospitalized for about 7 days before my son Conor arrived 8 weeks premature ─ at just 3 pounds, 10 ounces,” Beth said. Though she had hoped to give birth vaginally, Conor was delivered via C-section, which is often recommended for patients with Crohn’s. Dr. Levine notes that mothers with Crohn’s disease have an increased risk of premature delivery, small birth weight, or fetal death; yet, Beth feels that other factors likely caused her preterm delivery. “I should have slowed down, especially since I had a high-risk pregnancy. The week that my water broke, I was overly active with exercise and lifting heavy boxes.” Thankfully, following three weeks in the neonatal unit and a short period of in-home heart monitoring, now 6-months-old Conor is a healthy and happy baby!

After pregnancy, hormonal changes can either cause a Crohn’s flare-up or provide added protection. Beth says, “I haven’t had a flare-up since becoming pregnant. In some cases, the body auto-corrects; so technically, I am in remission!” Dr. Levine advises mothers with Crohn’s to discuss additional concerns associated with lactation (though research is scarce) and vaccines, as medications can impact a child’s immunity during the first six months of life. CCFA reports that if one parent has Crohn’s disease or ulcerative colitis, the chance of a child developing the condition is approximately 2-9%. If both parents have IBD, the likelihood increases to as high as 36%.

“Though there is no cure for Crohn’s disease, patients now have options because of the development of new medications. If a particular drug becomes ineffective, which usually occurs over time, we can introduce other drug remedies,” Dr. Levine reassures.

  • Learn more and impact research by participating in the Orlando Take Steps for Crohn’s & Colitis on April 27th.
  • Register at CCTakeSteps.org/Orlando.

 

Signs and Symptoms of Crohn’s Disease

While symptoms vary, common indicators include:

  • Persistent diarrhea
  • Rectal bleeding
  • Urgent need to move bowels
  • Abdominal pain
  • Constipation (which can lead to bowel obstruction)
  • Other IBD symptoms, including: fever, loss of appetite, weight loss, fatigue, night sweats, and loss of normal menstrual cycle
  • Delayed growth and development (in children)
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