Challenges Faced by Patients Undergoing Fecal Ostomy Surgery: A Qualitative Study of Colorectal Cancer Patient Perspectives.

Background: Ostomy education and support is instrumental in surgical recovery and adaptation. We aimed to evaluate 1) challenges faced by fecal ostomy patients with colorectal cancer and 2) resources necessary for recovery.

Methods: We recruited patients 21-90 days after scheduled fecal ostomy surgery for locally advanced or metastatic colorectal cancer from a single, tertiary academic center. We conducted 1:1 semi-structured interviews until thematic saturation, using hybrid deductive-inductive coding.

Results: We interviewed twenty patients (80% male, mean age 59.7 years). Several major themes emerged including, challenges with 1) practical ostomy management, 2) emotional distress, 3) adaptation to daily life, and 4) provider relationships. Participants faced ostomy care challenges due to peristomal skin issues, leaks, and difficulty ordering supplies. Many participants noted significant distress/anxiety related to embarrassment from leaks, odor, or noise. This distress led participants to fear going out in public, embarrassment from the ostomy, and anxiety with daily activities (e.g., returning to work and relationships). When adapting to life with an ostomy, several participants noted that anxiety impacted their ability to care for the ostomy and resume daily activities leading to social isolation. Patients reported challenges with provider relationships with lack of anticipatory guidance from the surgical team preoperatively including insufficient education on practical management, ordering ostomy supplies, ensuring adequate hydration, and maintaining proper nutrition.

Conclusions: Patients with colorectal cancer requiring fecal ostomy face many challenges related to the ostomy. Interventions that address practical management, navigating distress, adaptation, and provider education are needed to provide tailored education and support.