Surviving colorectal cancer: Long-term, persistent ostomy-specific concerns and adaptations

Virginia Sun, Marcia Grant, Carmit K. McMullen, Andrea Altschuler, M. Jane Mohler, Mark C. Hornbrook, Lisa J. Herrinton, Carol M. Baldwin, Robert S. Krouse

Research output: Contribution to journalArticlepeer-review

82 Scopus citations


Purpose: The purpose of this article was to describe persistent ostomy-specific concerns and adaptations in long-term (>5 years) colorectal cancer survivors with ostomies. Subjects and Setting: Thirty-three colorectal cancer survivors who participated in 8 gender- and health-related quality of life stratified focus groups and 130 colorectal cancer survivors who provided written comments to 2 open-ended questions on ostomy location and pouch problems participated in the study. Data were collected on health maintenance organization members in Oregon, southwestern Washington, and northern California. Methods: Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focu s groups were recorded, transcribed, and analyzed using content analysis. Written content from the open-ended questions was derived from a mailed questionnaire on health-related quality of life in survivors with ostomies and analyzed using content analysis. Results: Discussions related to persistent ostomy-related issues more than 5 years after formation were common. Persistent ostomy-related issues were focused on clothing restrictions and adaptations, dietary concerns, issues related to ostomy equipment and self-care, and the constant need to find solutions to adjust and readjust to living with an ostomy. Conclusions: Ostomy-specific concerns persist 5 years and more for long-term colorectal cancer survivors after initial ostomy formation. Adaptations tend to be individualized and based on trial and error. Findings underscore the need to develop long-term support mechanisms that survivors can access to promote better coping and adjustment to living with an ostomy.

Original languageEnglish (US)
Pages (from-to)61-72
Number of pages12
JournalJournal of Wound, Ostomy and Continence Nursing
Issue number1
StatePublished - Jan 2013

ASJC Scopus subject areas

  • Medical–Surgical
  • Advanced and Specialized Nursing


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