Long-standing UC and Ileoanal Pouch Surgery
Angie recently wrote into the blog and shared her own experience with UC through multiple medications and surgery:
1986 - diagnosed UC as a "tween", began sulfasalazine & prednisone. 2 hospital episodes 1986 and 1988.
early 1990s: off sulfa, changed to Asacol. Still on preds but lower dosage (10 mg/every other day??)
1996: flareup of joints, increased preds for two months, gradual taper to 5 mg every other day
late 1990s: finally off steroids after 10+ years.
2004: no more Asacol, due to IAPT successful surgery
Angie's story highlights the chronic nature of UC and the difficulty many patients experience tapering off of steroids completely. Angie relates she was on steroids for more than 10 years to control her colitis and joint symptoms and is now doing well off medications after a successful colectomy with ileoanal pull through (same as ileoanal pouch surgery). As discussed in prior blogs, the decision to have elective surgery for UC weighs the risks and benefits of chronic medications and potential side effects with removal of the diseased colon and future reduction of colon cancer risks. For elective situations, it is ultimately a question of quality of life, control of disease activity, and maintenance of future health.
With regard to quality of life issues, it is important for patients considering ileoanal pouch surgery to understand possible outcomes post-operatively. In general, individuals with ileoanal pouches pass on average 5-7 bowel movements per day. The bowel movements are typically liquid in nature because the colon which normally reabsorbs fluid is gone. As such, maintaining good hydration during sports and outdoor activities is important. Studies suggest 10-30% of people may experience a small amount of stool seepage at night while sleeping. Fewer are affected by episodes of daytime incontinence. About 30-60% of patients will have a single episode of "pouchitis" or inflammation of the pouch requiring a course of antibiotics for treatment. A small proportion, approximately, 8-10% may experience chronic symptoms of pouchitis requiring long-term courses of antibiotics and probiotics. As discussed in prior blogs, young women should be advised of the reduction of fecundity with childbearing associated with pouch surgeries. While fertility issues have not been associated with pouch surgeries for young men, reports of impotence or retrograde ejaculation are along the lines of 1%. The vast majority of individuals, however, report improved sexual functioning after pouch surgery to overall improved wellbeing.