Permanent end ileostomy ‘permanently’ impairs QoL in IBD

Aug 22, 2017 - E-Mentoring in IBD | Volume 10 • 2017

Issue 15

Clinical Question

Will patients with inflammatory bowel disease (IBD) who have a permanent end ileostomy (PEI) ever adapt to it and enjoy a normal quality of life?

Editor’s Bottom Line

PEI is associated with reduced quality of life which does not improve over time. PEI should be avoided if possible, and stoma issues in patients with IBD (especially Crohn’s disease) need prompt attention. Comparison of patients with PEI to those with other IBD outcomes (e.g. ileal pouch anal anastomosis) would be informative.


Schiergens TS, Hoffmann V, Schobel TN, et al. Long-term Quality of Life of Patients With Permanent End Ileostomy: Results of a Nationwide Cross-Sectional Survey. Dis Colon Rectum. 2017 Jan;60(1):51–60.


Eligible participants were registered at a national self-help organization (ILCO) for stoma and colorectal cancer in Germany; all had a permanent end ileostomy (PEI). Surveys were mailed to the 1434 eligible participants to collect information about demographics, clinical course, and stoma issues. Quality of life (QoL) was assessed using the SF-36, the Gastrointestinal Quality of Life Index (GIQLI), and the Cleveland Global Quality of Life Index.

The response rate was 55% (n=783) with responders having a median PEI duration of 19 years (range: 1–52 years; M;F 4:6). There were 344 and 300 participants diagnosed with ulcerative colitis or Crohn’s disease, respectively, 51 had colorectal cancer, 48 had familial adenomatous polyposis, and 40 were classified as other. The cohort’s mean BMI was 25.4 kg/m2, 59% had a history or were taking glucocorticoids, and 10% had short bowel syndrome. Stoma care problems were reported by 492 subjects, with the top 3 being: irritated skin/dermatitis (37%), recurrent blockage (17%), and symptomatic parastomal hernia (14%). Adverse effects of the PEI on activities were reported by 72% of respondents, with the top 3 being travel (47%), sports (40%), and leisure (33%). Vitamin B12 deficiency was the most common nutritional consequence, affecting 31%. All QoL measures showed significant (P<0.001) impairment among participants versus healthy controls, with the largest differences reported in physical and mental/emotional health. Adaptation to stoma over time did not significantly improve QoL. In a subset of participants without stoma care issues, their generic QoL was not significantly impaired (P=0.07) yet their health-related QoL remained significantly worse than healthy controls.


Study Design: Prospective cohort study
Funding: n/a
Allocation: n/a
Setting: National self-help organization, Germany
Level of Evidence: 2b (Oxford Levels of Evidence)

The summary and conclusion in this issue of E-mentoring in IBD pertains to the manuscript(s) being reviewed, and should be considered in the context of what is already known surrounding the topic and incorporated into practice as deemed appropriate by the individual learner.