Growing up with short bowel syndrome: Follow-up care matters

Short bowel syndrome, a serious condition in which a child lacks sufficient small intestine to absorb the nutrients the body needs to grow and thrive, was once a devastating diagnosis. Today, advances in care have helped save — and change — the lives of many kids with this disease. In fact, the multidisciplinary approach taken by the team in the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital has been clinically proven to improve outcomes: Its survival rate for patients with short bowel syndrome is over 90 percent, compared with the national average of 70 percent. 

Tracking long-term concerns

But as children with short bowel syndrome are living longer than ever, clinicians are discovering that this condition doesn’t just affect digestion and nutrient absorption. “We’re learning that short bowel syndrome is a chronic disease that extends to other organ systems, too,” explains Dr. Biren Modi, CAIR’s associate surgical director.

For this reason, kids with short bowel syndrome should see their care team for regular (at least annual) checkups, even if they no longer need to receive nutrition through a feeding tube or central line. Here are just three of the issues your child’s clinicians will be tracking.

Nutrient levels. Short bowel syndrome leads to a diminished ability to absorb all nutrients, including vitamins and minerals. “Even if your child stops needing intravenous or tube feedings, they still have a high risk for developing vitamin deficiencies,” says Megan Gray, one of CAIR’s clinical nutrition specialists. Because of this, your child will need long-term lab monitoring to screen for these concerns. Depending on the results, your child’s clinician may recommend certain medications or supplements.

Bone health. Difficulty absorbing certain nutrients can lead to weakened bones, putting kids with short bowel syndrome at risk for low bone mineral density and easy fractures, says Dr. Modi. Your child’s care team will monitor their calcium and vitamin D intake, and may prescribe supplements of either or both of these nutrients. When your child reaches 5 years old, they should undergo a dual-energy x-ray absorptiometry (DEXA) scan to assess their bone strength.

They should also stay active if possible. “Any kind of weight-bearing exercise stimulates the bones to absorb calcium and become stronger,” explains Dr. Modi. “When sports and other physical activities are an option, we enthusiastically encourage that.”

Gastrointestinal concerns. Some kids with short bowel syndrome experience other problems in their digestive tract, such as gastrointestinal inflammation, reflux, and ulcers. If your child has symptoms such as belly pain, bleeding, or vomiting, their clinician will recommend a diagnostic evaluation which may include an endoscopy. This test can help identify the source of inflammation and other abnormalities.

“Through regular appointments with an expert multidisciplinary group of clinicians at a program like CAIR, children with short bowel syndrome can be monitored for and hopefully prevent long-term complications, allowing them to lead their best lives,” says Dr. Modi.

Learn more about the Center for Advanced Intestinal Rehabilitation and watch our recent Facebook Live event on living well with short bowel syndrome.