Cystectomy for ulcerative interstitial cystitis: sequelae and patients' perceptions of improvement

To evaluate the outcomes after cystectomy for ulcerative interstitial cystitis (IC).

Medical records were reviewed for history, operative data, and postoperative events. A mailed survey assessed preoperative symptom severity/duration, providers seen, and symptom changes on 7-point scaled global response assessments. Descriptive statistics were performed.

Of 10 women (mean age 64 ± 12.5 years), 9 had cystectomy with ileal conduit and 1 had a neobladder. All had previous cautery of Hunner's ulcer (median 3.0 cautery procedures). Maximum bladder capacity at first and last cautery was median 325 and 188 mL, respectively. Median operative time was 321 minutes, blood loss was 200 mL (range, 100-900), 4 of 10 were transfused, and length of stay was 8 days. During a mean follow-up of 3.9 years, 6 patients required 1 or more reoperations, including hernia repair (2), urostomy revision (2), revision of ureteroileal anastomosis (1), small bowel resection (1), and neobladder cutaneous fistula repair (1). Survey respondents (n = 9) reported having seen (mean) 5.4 ± 3.8 providers before cystectomy. Median duration of symptoms was 5 years, and day and nighttime urinary frequencies were 30 and 15 times, respectively. Postoperatively, IC pain had resolved in all patients except for one. On the global response assessments, patients had moderate/marked improvement in overall symptoms (8 of 8), pain (9 of 9), sexual function (4 of 6), and quality of life (8 of 9), 7 of 9 were very satisfied with the treatment, and 8 of 9 would make the same decision again.

Despite subsequent reoperations, symptom improvements lead to high levels of satisfaction with cystectomy for IC.