Abstract

Introduction: Although the primary treatment for UC is medical, approximately 20% to 30% of patients with Ulcerative Colitis (UC) will undergo proctocolectomy. Ileal Pouch anal anastomosis (IPAA) surgery is an option for patients to restore gut continuity post proctocolectomy. The majority of patients will develop pouchitis. We report patient use and applicability of the IBD-Disk in pouchitis patients at a tertiary IBD Centre in the West Midlands. Methods: 11 patients attending the pouch clinic at a tertiary IBD centre in West Midlands were interviewed over a 6 month period (December 2020 to May 2021) with regards to their functional disability using the IBD Disk. In addition they were asked to provide their insights as to what additional symptoms should be included as part of the Disk. This element was deemed crucial as the original IBD Disk did not include patient involvement in its design. Results: 9/11 (82 %) were male. Age ranged from 35 to 73 years, mean 51 years. 8/11 (72 %) were White British and the remaining were Asian. Mean pouch duration was 18 years, range 3 to 30 years. Except for 1 patient, all others had a single IPAA procedure. 5/11 (45 %) had a single course of antibiotics with a maximum duration of a month, namely Ciprofloxacin or Metronidazole. Out of the 10 components of the IBD Disk, lack of energy and feeling tired was the most important for our patients with a mean score of 7.3/10 followed by abdominal pain with a mean score of 6.7 and difficulty sleeping with a mean score of 6.4. The lowest scoring domains were education and work, mean score 3.5 followed by interpersonal interactions 3.7. Additional symptoms that were important to this patient group but not included in the IBD Disk were mental wellbeing, rectal bleeding and fever. Incontinence for liquid stools also proved to be an important concern to 82% (9/11) of patients. Further aspects of concern comprised needing to wear a pad or plug, inquiring about their health on the day of the clinician visit and the effect of food on their pouch symptoms (54.5%) (6/11). Conclusion: The IBD Disk was used to assess its potential in our pouchitis patients. Its limitation however is that it is not designed for pouchitis specifically and was not developed with patient involvement. This work would suggest however that the IBD disk may be adaptable for use in this patient group by the addition of the following symptoms- mental well being, rectal bleeding, fever and incontinence.

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