A scoping review of the qualitative literature reporting experiences of living with a stoma for inflammatory bowel disease.
Ryan Essex, Lesley Booth, Fuschia Sirois and 2 others
PMID 38780277WHAT IT FOUND
Adjustment to a stoma for IBD takes far longer than the typical three-month expectation, often up to nine months for physical control and years for emotional acceptance.
Patients need honest pre-operative preparation, realistic expectations, and ongoing specialist support to manage stigma and body image.
Key findings
01Physical and emotional adjustment to a stoma takes significantly longer than the three-month competence timeline often taught, with some issues taking an average of nine months to settle.
02Negative reactions from non-specialist ward staff, such as displaying disgust or setting unrealistic problem-free expectations, have enduring negative effects on patients' emotional and relational adjustment.
03Preparedness and information-seeking, particularly when led by the patient and supported by specialist nurses, facilitates better post-operative adjustment and confidence in self-management.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The evidence is primarily cross-sectional, relying on patient recall rather than tracking adjustment in real time, which limits understanding of the actual trajectory of adaptation. The review excluded the term 'ostomy' from the search strategy, potentially missing some American publications. Data extraction from mixed-cohort studies (those including non-IBD patients) may not be perfectly precise for the IBD-specific findings. Parastomal hernias, a common complication affecting control, were not specifically addressed in the included studies.
Declared interests
The authors declare no conflicts of interest. No external funding was received for this review.
The easy way to misread this
Do not assume that a patient's lack of confidence or ongoing distress at three months post-surgery indicates a failure of care or poor compliance. The review shows that physical and emotional adjustment often takes much longer, with significant issues potentially persisting for nine months or more.