Surgery in young adults with inflammatory bowel disease: a narrative account

Abstract

Background: Inflammatory Bowel Disease comprises two major intestinal disorders, Crohn's Disease and Ulcerative Colitis. When medical management cannot control the disease, surgery is necessary. Having an operation is a major concern for young people with Inflammatory Bowel Disease. Some may try to avoid or defer it. Despite this, afterwards they may have a significant improvement in quality of life.

Objectives: The aim of the study was to explore the experiences of young people with Inflammatory Bowel Disease who have had, or are about to have, surgery for their condition.

Design and method: Narrative study using semi structured interviews.

Participants: Twenty-four young adults aged between 18 and 25 (11 male and 13 female) with Inflammatory Bowel Disease who had undergone or were awaiting surgery from one tertiary referral centre in the United Kingdom.

Findings: Key factors that affected young people as they approached and adjusted to an operation were elicited which provided an understanding of this change in their lives from their own perspective. The prospect of having an operation, particularly the fear of a stoma, generated anxiety and concern for many of these young people. As young adults, participants tended to want to be involved in deciding when their surgery should occur and to have their opinions considered. The data revealed the different types of support that were given to these participants, what they found helpful and the function that they served. Gender differences were identified in the nature of support required from partners and in body image concerns. Issues and concerns were identified which can be addressed in clinical nursing practice to prepare young adults for this life changing event. These helped to explain how young people viewed the prospect, impact and experience of surgery.

Conclusion: The findings of this study revealed new information relating to the experience of surgery in young adults with Inflammatory Bowel Disease including their perceptions of the event itself, their decision making, their greatest concerns, the support they require and their ways of coping. Since there is little published work regarding how surgery affects this particular patient group, the study should be of interest to specialist nurses who are closely involved in the care of young adults with Inflammatory Bowel Disease.

Keywords: Inflammatory Bowel Disease; Narrative study; Surgery; Young people.