“A Guide to Gutsy Living”

A recent article ( David JG, Jofriet A, Seid M, et al. “A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit. Pediatrics. 2018;141(5): e20172789) describes “A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit (Full Text)

From ImproveCareNow: Download a free copy of the Ostomy Toolkit


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 was reliable and accurate.

In this article, we describe how we, as patients, harnessed the capacity of a collaborative chronic care network1 and were supported to develop a resource that patients needed.


We started a national task force of interested patients and parents who had experiences with ostomies to develop a pediatric ostomy toolkit. The task force was composed entirely of patients and parents and consisted of 7 patients and parents

After a literature review, we asked task force members to identify questions and topics related to living with an ostomy, including questions members had preoperatively, immediately postoperatively, and in the extended time since their surgeries. From this prompt, our group generated a list of topics all patients and parents agreed on based on the shared concerns, insights, or questions our task force members had around ostomy surgery… After the creation of the toolkit, we reached out to clinicians to provide clinical review.


Our final 19-page, colorful toolkit included topics relating to friends, school, travel, ostomy supplies, clothing, playing sports, using humor to cope, emergency kits, educational issues (eg, 504 plans), “Gastronauts” (Gastronauts are freely available puppets with ostomies), and ostomy medical language…The pediatric ostomy toolkit was posted on the ICN Exchange platform

My take (borrowed from authors): In our patient- and parent-led toolkit project, we demonstrate how patients and families can self-organize and ask clinicians to consult to create needed resources within a network


  • The Oley Foundation website is a good link for patients with enteral tubes, ostomies, and central lines. http://oley.org/
  • From ImproveCareNow: Download a free copy of the Ostomy Toolkit

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