Timing of restorative proctocolectomy in patients with medically refractory ulcerative colitis: the patient's point of view

Abstract

Background: Development of biologic agents has led to new therapeutic options for patients with refractory ulcerative colitis, and intensive medical therapy allows delay of restorative colectomy. However, the overall rate of colectomies has not changed. The decision as to timing of the operation is difficult.

Objective: Our aim was to elucidate the patients' views about the timing of their own proctocolectomy.

Design: This was a retrospective review of a prospectively designed database combined with a follow-up survey questionnaire.

Settings and participants: We included patients who underwent proctocolectomy and ileal pouch-anal anastomosis for refractory ulcerative colitis from 1999 through 2009 at our university hospital.

Main outcome measures: A questionnaire was sent to patients asking whether they would have preferred to have had the operation performed earlier, later, or at the same time as it was actually done and to give the number of years or months earlier or later that they would have preferred. They were also asked to give reasons for their preference. Patients who preferred an earlier operation were compared with those satisfied with the timing regarding measures of postoperative quality of life and pouch function collected from the institution's prospective database.

Results: Of 84 eligible patients, 70 (83%) responded. Of these, 37 (53%) would have preferred an earlier operation; 33 patients (47%) were satisfied with the timing. No patient would have chosen a later operation. Patients who preferred an earlier operation wished it to have been a median of 2 years earlier (range, 2-120 months). The main reasons for a preferred earlier time point were postoperative improvement of stool regulation in 89% (33/37), reduction of bleedings in 84% (31/37), and relief of pain in 68% (25/37). No significant differences were observed between groups regarding postoperative quality of life or pouch function.

Limitations: Limitations of the study included lack of validation and a nonsymmetrical structure of the questionnaire.

Conclusions: About half of the patients of our study would have preferred to have had proctocolectomy earlier than it had been performed, mainly because of the relief of symptoms that they experienced after the operation. For patients with an emerging refractory course of ulcerative colitis, earlier restorative proctocolectomy should be considered as an alternative to further intensified medical treatment.