Background: Many IBD patients worry about needing a stoma and may endure poor quality of life (QoL) and difficult bowel symptoms to avoid one. Stoma care advice abounds, but the emotional impact of anticipating and having stoma forming surgery (SFS), and whether expectations match the actual experience, is under-reported. This study explored patients' and clinicians' views of SFS and how pre-operative concerns compare to outcomes.
Methods: We purposively recruited UK participants from hospital outpatient and community sources, and clinicians from public hospitals. We conducted four focus groups and 29 semi-structured interviews with people with IBD and either: a current temporary, recently-reversed or permanent stoma, or stoma naïve and worried about the prospect, and individual interviews with 18 IBD clinicians. Interviews were audio recorded and transcribed. Data were analysed thematically.
Results: Four themes emerged:
Pre-operative concerns and expectations: patients and clinicians cite body image, stoma visibility, leakage and smell, and impact on relationships as concerns. Patients expect a stoma to disrupt preferred activities. Clinicians expect to avoid SFS in young adults.
Decision-making: patient decision-making about SFS is complex. Some clinicians, expecting patients to react negatively, avoid the topic. Others advocate early mention of surgery, with dialogue about SFS increasing when medication does not control IBD. The words “failure” and “last resort” transmit negativity about this therapeutic option to patients.
Surgery and recovery: disease status often forces consent for SFS, but age, gender, QoL, relationships, and prior contact with others with a stoma are influential. The immediate post-operative period is the most challenging.
Long-term outcomes: most patients' pre-operative concerns prove unfounded, with outcomes often better than expected. Patients' ability to accept a stoma may be influenced by duration and quality of information, preparation and support.
Conclusions: Patients need balanced information on benefits and challenges of all treatment options including surgery, from an early stage. Multi-disciplinary team dialogue about likely SFS should begin when medication fails to control IBD. Using negative language and discussing SFS as a “last resort” are unhelpful. Patients and clinicians agree that support from similar others with a stoma is highly effective at reducing a patient's concerns. For many, life with a stoma is better than anticipated, improving QoL and control. Ongoing IBD and stoma nurse support aids recovery and adjustment.