After seven years of living with bouts of excruciating gastrointestinal pain and constant trips to the bathroom, the option of ostomy surgery sounded “freeing” to then 19-year-old Jennie David.
She knew undergoing the surgery for her Crohn’s disease would mean wearing a waste-collection pouch on her abdomen for the rest of her life. But that seemed better than the alternative.
“For me, it was a matter of life and death. I can’t describe to you the amount of pain you feel when you have an organ dying inside of you, or the embarrassment of having an accident on stage during a dance recital,” said David, who grew up in Nova Scotia, Canada. “I knew it would give me tremendous independence.”
Still, after David underwent her surgery, she was left with more questions than answers.
“Could I be intimate? What kind of clothing could I wear with it?” David wondered. “After the surgery – when you’re still tired and in pain — the nurses teach you how to change the bag, but it has nothing to do with how you live with it.”
Now, David is a PhD candidate in clinical psychology at Drexel University’s College of Arts and Sciences with a goal of doing both clinical work and research with children and adolescents who are living with chronic diseases. She co-created a toolkit, “A Guide to Gutsy Living,” which is the first resource specifically for and by young people who have undergone temporary or permanent ostomy surgery. A report about the toolkit was published in the journal Pediatrics in April.
David led the development of the resource with other patients through her involvement with the ImproveCareNow (ICN) Network, a quality-improvement collaborative of more than 100 centers in the United States, Europe and Middle East that cares for children and adolescents with inflammatory bowel disease (IBD). While serving as co-chair of the ICN’s Patient Advisory Council, several clinicians approached David and fellow IBD patient Alexander Jofriet about mentoring other young people who were facing ostomy surgery.
However, the pair soon realized that the demand for their mentorship was high — especially since most online information about ostomies are geared toward adults. The one-to-one mentorship was also not an efficient way to disseminate ostomy education, David said. They decided that developing a toolkit would reach a greater patient population.
The “Guide to Gutsy Living,” authored by David and six other contributors (all patients and/or parents of patients), is an effort to arm young patients with information provided straight from the people who shared their experiences, as well as to give young people autonomy in their own care, David said.
The toolkit is conversational, straight-forward and humorous. It provides insights from each contributor across topics, without suggesting a singular ‘right’ answer for how to live with an ostomy. It offers tips about how to talk to friends about having an ostomy, as well as how the new lifestyle could impact travel, playing sports and wearing different types of clothing. The guide also includes an education plan directed toward parents and teachers.
The guide is available for free on the ICN website. David said she hopes to expand the toolkit and help it to reach as wide an audience as possible. Additionally, she hopes the guide and accompanying Pediatrics article will shed light on the importance of a patient-driven “bottom-up” approach to health care delivery.
“In general, children are not very engaged in their health care. Your parents make the decisions; everything is happening to you, not with you,” David said. “This project shows that patients have the motivation and ability to inform clinical decisions.”
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