Undergoing repeated colonoscopies - experiences from patients with inflammatory bowel disease

Background: Patients with Inflammatory Bowel Disease (IBD) undergo repeated colonoscopies to monitor their lifelong disease.Objective: To describe experiences from repeated colonoscopies in patients with IBD.Methods: Within a qualitative design 33 patients with IBD who had undergone at least three colonoscopies were interviewed by telephone. Hermeneutic interpretation served as the framework of the analysis.Results: The colonoscopy procedure was explained as strenuous to undergo and interfered with daily life. It reminded patients of a lifelong disease, but the necessity of the colonoscopy, being life-saving, was highlighted. The colonoscopies entailed several unpredictable aspects - no control over pain, potential blame and unpredictable care. Shame, inferiority and uncertainty enhanced the feeling of being exposed and vulnerable.Conclusion: Repeated colonoscopies can be perceived as both an assurance of life and a reminder of a lifelong illness. Healthcare professionals need to provide support in terms of awareness of patients' vulnerability, despite extensive experience of the colonoscopy procedure. For example, person-centred care and continuity in care are potential interventions based on the results of this study. Another important aspect of care is to minimise interference in everyday life to prevent feelings of loss of the healthy self, for example by self-administrated outpatient booking systems.Summarize the established knowledge on this subject. • Previous research in quality related to colonoscopy has mainly focused on technical and medical aspects. • Knowledge based on the patients' perspective is rare and the few existing studies included mainly persons included in screening programs.What are the significant and/or new findings of this study? • Patients with IBD undergoing repeated colonoscopies express specific needs in several aspects related to the colonoscopy procedure: • Continuity and a person-centered approach from healthcare professionals. • Support to cope with feelings of shame and inferiority as well as pain.