Restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) has become the standard surgical treatment for the majority of patients with inflammatory bowel disease (IBD) who require colectomy. Pouchitis is the most common long-term complication that can occur postoperatively. The majority of studies examining pouchitis and pouch complications have been performed in single center cohorts. We aimed to evaluate the prevalence of pouchitis among the large internet based Crohn's and Colitis Foundation of America (CCFA) Partners cohort and to identify the general clinical characteristics and patterns of medication use among patients with a history of pouchitis. Additionally, we aimed to describe Patient Reported Outcome Measurement Information System (PROMIS) measures among patients status post IPAA.Methods:
We performed cross-sectional analyses using the CCFA Partners cohort of patients with a self-reported history of IBD and IPAA. Bivariate analyses were used to compare demographics and medication use patterns among patients ever reporting pouchitis and those with IPAA but no history of pouchitis. We also compared PROMIS measures and short IBD Questionnaire (SIBDQ) quality of life measurement between patients who had reported recent pouchitis (over the past 6 mo) and those with no reported pouchitis over the same interval.Results:
Among 248 patients reporting a history of IPAA, 203 (82%) reported a history of pouchitis. Compared to patients without pouchitis, patients reporting a history of pouchitis were more likely to report use of antibiotics (30% versus 0, P < 0.001) and aminosalicylates (11% versus 0, P = 0.020), and were more likely to have a longer disease duration prior to survey completion (IBD Diagnosed >15 yr ago, 32% versus 20%, P = 0.020). There were no differences in sex, race, practice setting of current gastroenterologist (academic versus community), or number of visits with a gastroenterologist in the past year. Patients with recent pouchitis demonstrated higher mean scores in pain interference (53.4 versus 47.1), depression (51.6 versus 47.5), anxiety (52.7 versus 48.3), and fatigue (57.2 versus 49.3, all P values <0.001). Patients with recent pouchitis reported lower mean scores in social role satisfaction (47.2 versus 52.7) and SIBDQ (4.7 versus 5.6, all P values <0.001). These differences were all clinically meaningful.Conclusions:
In a large internet based cohort of patients with IBD, a majority of patients with IPAA reported a history of pouchitis. Antibiotics were the most common therapy for pouchitis. Patients reporting pouchitis within the 6 months prior to survey assessment demonstrated clinically meaningful decrements in patient-centered outcomes in multiple domains of physical and psychosocial functioning.