Helping to understand ileoanal pouch outcomes in IBD patients

Up to one-third of ulcerative colitis patients may require surgery because of their disease. The most commonly performed surgery is a proctocolectomy with ileal pouch-anal anastomosis, commonly known as a j-pouch. Over the course of one, two, or three surgeries, the colon and rectum are removed, and an internal pouch is created by attaching the small intestine to the rectal cuff, eliminating the need for an external pouch.

Although a j-pouch can significantly improve ulcerative colitis symptoms, many patients experience other symptoms or complications related to their internal pouch. To adjust to their new normal, patients report making important accommodations to their daily life, including dietary modifications, use of medications to slow the pouch function down, adjustments to their job responsibilities, and other equally important modifications to help live with their changed anatomy.

Last year, a group of researchers sponsored by the Crohn’s & Colitis Foundation's Surgery Research Network conducted the Patient Reported Outcomes after Pouch Surgery (PROPS) Delphi Study looking to patients and clinicians to gain a better understanding of what constitutes the spectrum of normal life in the life of a patient with an internal pouch. The team received input from more than 200 patients and nearly 120 clinicians. This cohort of volunteers identified many of these important symptoms and accommodations.

The PROPS team is now recruiting participants for a second follow-up study. This time the PROPS team seeks to develop a standardized patient questionnaire that will help measure the frequency and impact of these symptoms and accommodations on patients. They also aim to understand how some of these experiences may change over time. 

Eligible participants will be asked to complete a web-based questionnaire, and possibly a second one two weeks later. Each of these questionnaires should take roughly 20 minutes to complete and will ask about various aspects related to pouch function and quality of life. Some questions maybe repetitive and ask same thing in several ways. Some questions may have nothing to do with pouch function and will serve as “control” questions.

Armed with your answers, the PROPS team will then create a a standardized patient questionnaire which could help clinicians discuss ileoanal pouch outcomes with patients who are considering ileoanal pouch surgery. Furthermore, research could begin on improving negative symptoms that maybe associated with pouch surgery. Lastly, treatments could be studied by measuring some of these negative symptoms before and after an intervention.

Click here to learn more about the PROPS Study and how you can help.

Dr. Liliana Bordeianou (Massachusetts General Hospital and Harvard Medical School) and Dr. Madhulika Varma (University of California - San Francisco) are colorectal surgeons and principal investigators of the PROPS Study.