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GI symposium supports families
 

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Kate Donovan, RN, Julie Perry and Diane Goldman

t is challenging enough for adults to contend with Crohn’s disease and ulcerative colitis, two chronic inflammatory bowel diseases (IBD) that must be medically managed and can be socially difficult. But for adolescents with these conditions, living with IBD is even more difficult—which is why last month the Division of Gastroenterology and Nutrition joined with the Crohn’s and Colitis Foundation of America (CCFA) to host a symposium for the families of children and adolescents with the disease.

The symposium, which attracted over 150 parents from around New England, focused on explaining the causes of IBD, discussed medications, nutrition and the stress of chronic illness. Kate Donovan, RN, special projects coordinator in Medical Patient Services Endoscopy, discussed formation of patient and family support groups, and a Children’s patient spoke about preparing for and going to college while dealing with the illness.

“A lot of people told me afterwards that nothing like this was available to them before,” says Donovan. “They were incredibly thankful for the information. Even though they may have heard some of it during clinical visits, this was a way for them to really understand and discuss IBD and how it was affecting their families. It also allowed them to network with other families that are dealing with the disease.”

The idea for the symposium began with Donovan, who felt the hospital could do more to support families. Her initial idea was to create a support group, but the idea evolved into the symposium when she discussed it with Athos Bousvaros, MD, associate director of the IBD Program. The gathering included IBD experts from Children’s, New England Medical Center, Massachusetts General Hospital and other hospitals in the region. The CCFA has held similar symposiums for adults for the past decade, but this was the first pediatric gathering in many years.

With the success of the symposium, participants hope to make it an annual event. For more information about Children’s IBD Program, call ext. 5-6058. For more information about CCFA, call (781) 449-0324. —CM