- 159 patients with ulcerative colitis who underwent ileal pouch–anal anastomosis with a J-pouch completed the Memorial Sloan-Kettering Cancer Center Bowel Function Instrument (MSKCC BFI) at least six months after ileostomy reversal
- Individual MSKCC BFI questions revealed frequent problems with clustering of stools (56% of patients) and incomplete emptying (51%), two domains important to patients that may be underappreciated by surgeons
- Patients with a J-pouch had significantly worse total MSKCC BFI scores, as well as significantly worse scores on the frequency and diet subscales, than a historical cohort of patients who underwent proctectomy for rectal cancer
- 48% of respondents with a J-pouch said they at least sometimes alter their activities because of their bowel function
- 83% of patients with a J-pouch said their quality of life improved after surgery
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Ileal pouch–anal anastomosis (IPAA) in a J-pouch configuration is the definitive procedure for patients with ulcerative colitis who require surgery. Functional outcomes are generally acceptable, but creation of a J-pouch can alter bowel habits so much that it drastically affects a patient's daily life.
Most studies of J-pouch creation have focused on outcomes that surgeons deem important, particularly fecal incontinence and frequency of bowel movements. Researchers in the Section of Colon and Rectal Surgery at Massachusetts General Hospital including Grace C. Lee, MD, and Paul M. Cavallaro, MD, residents in the Department of Surgery, Liliana G. Bordeianou, MD, MPH, FACS, FASCRS, chief of the Colorectal Surgery Center, co-chair of Partners Healthcare Colorectal Surgery Collaborative and associate professor of surgery at Harvard Medical School, and colleagues, recently took a different research approach: they investigated which bowel symptoms are most bothersome to patients. Their report appears in Diseases of the Colon and Rectum and lays the foundation for an ongoing multicenter trial led by Dr. Bordeianou designed to use patient input to design a "J-pouch syndrome" score.
The researchers received 159 responses out of 350 surveys sent to patients with ulcerative colitis who underwent J-pouch reconstruction with a stapled anastomosis and subsequent ileostomy reversal at Mass General between September 2000 and June 2016. The minimum time between ileostomy reversal and survey completion was six months; the median was 21.5 months.
Among other items, the respondents completed the Memorial Sloan-Kettering Cancer Center Bowel Function Instrument (MSKCC BFI), which was developed and validated in patients undergoing sphincter-sparing surgery for rectal cancer.
MSKCC BFI Results
Patients reported a median of eight bowel movements in 24 hours. With regard to their bowel function:
- 90% said they are sometimes, rarely or never able to wait 15 minutes to get to the toilet
- 56% reported clustering of stools (another bowel movement within 15 minutes of the last one) sometimes, always or most of the time
- 51% reported feeling complete evacuation sometimes, rarely or never
- 51% said they sometimes, rarely or never know the difference between having to pass gas and having a bowel movement
- 44% said they are sometimes, rarely or never able to control passing gas
- 48% said they alter their activities because of their bowel function sometimes, always or most of the time
Comparison with MSKCC BFI Validation Cohort
The researchers compared MSKCC BFI scores for the J-pouch cohort with those of the 127 patients in the original validation study of the MSKCC BFI (as published in Diseases of the Colon and Rectum, 2005). The average total score was 59.9 versus 63.7, indicating worse bowel function with a J-pouch (P < .001).
The MSKCC BFI includes three subscales:
- Frequency (number of bowel movements, diarrhea, ability to delay bowel movement by 15 minutes and ability to get to the toilet in time)
- Diet (whether certain liquids or solids increase the number of bowel movements per day and/or whether the patient limits liquids or solids to control their bowel movements)
- Urgency/soilage (daytime soilage, nighttime soilage, use of pads, altering activities because of bowel function)
On the frequency and diet subscales, the average scores were significantly worse in the J-pouch cohort than in the historical rectal cancer cohort. On the urgency subscale, the average score of the J-pouch cohort was significantly better.
Quality of Life
Most respondents in the current study said their quality of life improved after J-pouch creation: 57% of patients said it was much better and 26% said it was somewhat better.
Respondents also compared their current quality of life with what they had expected postsurgery: 50% said it was somewhat or much better, 22% said it was as expected and 28% said it was somewhat or much worse.
Clustering of stool and incomplete evacuation have only seldom been reported in patients with a J-pouch, but these symptoms are clearly important components of bowel function. The constellation of symptoms identified in this study is analogous to the low anterior resection syndrome that frequently occurs after proctectomy for rectal cancer, and it may represent a previously undescribed "ileoanal J-pouch syndrome."
Bowel function was seemingly worse in the J-pouch cohort than in the historical rectal cancer cohort, but 83% of patients with a J-pouch said their quality of life improved after surgery.
Surgeons can use these results to counsel patients and help them set more accurate expectations about exactly how their bowel function will change after surgery.
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