As patients (J.G.D. and A.J.) who have lived with pediatric-onset inflammatory bowel disease (IBD) since 12 and 9 years of age, respectively, and who underwent ostomy surgery at 19 and 15 years of age, respectively, we experienced a lack of psychosocial education about our surgeries. This negatively impacted our ability to adjust postoperatively to having an ostomy. For example, we had to learn how to explain our ostomies to friends and how having an ostomy might impact our clothing choices. The education we received about our ostomy surgery was brief and focused only on basic skills regarding caring for an ostomy, including changing and emptying the bag, but did not address concerns we had about living with ostomies as part of our everyday lives. This educational void placed the burden on us as patients to find resources on our own, decide if the information was appropriate, and determine if it...
“A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Jennie G. David, Alexander Jofriet, Michael Seid, Peter A. Margolis, for the ImproveCareNow Pediatric IBD Learning Health System; “A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit. Pediatrics May 2018; 141 (5): e20172789. 10.1542/peds.2017-2789
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