Quality of life for kids with ulcerative colitis and other inflammatory bowel disease

March 07, 2018

For children whose chronic ulcerative colitis can't be managed with medication, Mayo Clinic Children's Center offers expertise in single-incision laparoscopic ileal pouch-anal anastomosis (IPAA). The procedure is a safe alternative to standard laparoscopic-assisted IPAA and can reduce postoperative length of stay without affecting short-term postoperative morbidity, according to a study of Mayo Clinic patients reported in the February 2015 issue of the Journal of Laparoendoscopic & Advanced Surgical Techniques.

The study found that children who have single-incision laparoscopic IPAA have a median hospital stay of four days compared with seven days after standard laparoscopic-assisted IPAA. Single-incision laparoscopic IPAA also generally causes minimal scarring.

"We make a single 1.5-centimeter incision versus four ports and a Pfannenstiel incision for a laparoscopic-assisted procedure. That reduces pain and speeds recovery," says D. Dean Potter Jr., M.D., a pediatric surgeon at Mayo Clinic Children's Center in Rochester, Minnesota.

"IPAA surgery allows children with chronic ulcerative colitis to have their lives back," he adds. "Children who have a chronic disease develop ways to deal with it. But that often involves giving up activities that they need and want to do, such as going to school or doing sports. After surgery, patients in general are very happy that they can control the stool and predict when they will have bowel movements, versus the urgency and pain they have with uncontrollable inflammatory ulcerative colitis."

As a center of excellence for gastroenterology and pediatrics, Mayo Clinic has pediatric surgeons with extensive experience performing IPAA in children. "It's one of the most complicated gastrointestinal procedures that's done, so it's beneficial for patients to seek treatment at a large-volume center," Dr. Potter says.

A long-term study of Mayo Clinic Children's Center patients found that an estimated 92 percent who had IPAA for ulcerative colitis had pouch survival at 20 years after their procedures. That study, reported in the October 2015 issue of the Journal of Pediatric Surgery, also found that quality of life for these patients was generally excellent and stable over time.

"However, we don't want to do surgery on patients without first making sure we've tried the proper medications," Dr. Potter says. "Once the patient has failed medications or doesn't want to progress onto a more aggressive medical therapy, then it might be time for surgery."

Multidisciplinary inflammatory bowel disease center for children

Children with ulcerative colitis or Crohn's disease are treated at Mayo Clinic's Inflammatory Bowel Disease Center for Children, which provides a multidisciplinary approach to care. Patients and caregivers meet with a treatment team that includes a pediatric gastroenterologist specializing in inflammatory bowel disease, a psychologist, a social worker and a surgeon if needed. Experienced pediatric radiologists use MR enterography and occasionally capsule endoscopy to distinguish ulcerative colitis from Crohn's disease, which is crucial for decisions about treatment.

"We no longer offer IPAA to children with Crohn's disease," Dr. Potter says. "Our study showed that the long-term outcomes for pouch survival is dramatically reduced in patients with Crohn's disease versus ulcerative colitis."

The Inflammatory Bowel Disease Center for Children also has experience diagnosing and treating children with very early-onset inflammatory bowel disease. Children with that condition can have genetic testing for immunodeficiency at Mayo Clinic's Center for Individualized Medicine.

Recognized as the best Gastroenterology & GI Surgery hospital in the United States by U.S. News & World Report, Mayo Clinic's campus in Minnesota offers a smooth transition from pediatric to adult care. "We're fortunate because we're essentially on the same floor in the same building. Our pediatric gastroenterologists work with adult gastroenterologists every day. If there are questions about a patient, our gastroenterologists can walk down the hall and talk to each other," Dr. Potter says.

"Patients don't suddenly have to go to a different hospital," he adds. "They're coming to the same place — they're just seeing an adult physician rather than a pediatric physician."