Abstract
BACKGROUND: Education and support for ostomy are instrumental in surgical recovery and adaptation. This study aimed to evaluate (i) the challenges faced by fecal ostomy patients with colorectal cancer and (ii) the resources necessary for recovery. METHODS: This study recruited patients 21 to 90 days after scheduled fecal ostomy surgery for locally advanced or metastatic colorectal cancer from a single tertiary academic center. This study conducted 1:1 semistructured interviews until thematic saturation using hybrid deductive-inductive coding. RESULTS: This study interviewed 20 patients (80% male; mean age of 59.7 years). Several major themes emerged, including challenges in (i) practical ostomy management, (ii) emotional distress, (iii) adaptation to daily life, and (iv) provider relationships. The participants faced ostomy care challenges owing to peristomal skin issues, leaks, and difficulty ordering supplies. Many participants noted significant distress or anxiety related to embarrassment caused by leaks, odors, or noise. This distress led participants to fear going out in public, embarrassment from the ostomy, and anxiety about their daily activities (eg, returning to work and relationships). When adapting to life with an ostomy, several participants noted that anxiety affected their ability to care for the ostomy and resume their daily activities, leading to social isolation. Patients reported challenges with provider relationships and a lack of anticipatory guidance from the surgical team preoperatively, including insufficient education on practical management, ordering of ostomy supplies, ensuring adequate hydration, and maintaining proper nutrition. CONCLUSION: Patients with colorectal cancer who require fecal ostomy face several challenges related to ostomy. Interventions that address practical management, navigating distress, adaptation, and provider education are needed to provide tailored education and support.