I was diagnosed with ulcerative colitis (UC) at age 19 and waged war against it for 10 years. I was in and out of various hospitals 19 times during that ten year period with an average stay of one month. As UC wore me down I lost my job and became literally house-bound because I had to be near a bathroom. Before having a BCIR though, I had a Koch pouch that lasted nearly 18 years. The Koch operation was performed at a local hospital and failed within days of my release. The local doctor, who claimed to know the procedure butchered and nearly killed me. He put me in ICU for a week after surgery. At that time (early 80s), there were no menus or guidelines in place to follow so I didn't know what kind of foods to eat or should avoid or how much or what kind of liquids to drink; the doctor and nurses couldn't help in that regard either - no one knew. Several months later with an external bag stuck to my body, I went to Mt. Sinai Hospital in NYC and was operated on a second time by Dr. Irwin Gelernt. Dr. Gelernt studied under famed Dr. Koch of Sweden for whom the pouch is named. Dr. Gelernt patched me up and made me functional by correcting the problems caused by the first doctor. However, after 18 years that "fix-it" job finally gave up the ghost. It was purely accidental that I stumbled across a Palms at Pasadena ad in a magazine. I mailed the info card and Dr. Pollack called me one afternoon and talked to me for nearly three hours! A conference was scheduled at Palms for the following month to see if I was a BCIR candidate and the rest, as "they" say, is history.
My Koch pouch kept springing leaks because of a bad valve, the one that Dr. Gelernt "fixed" after the original botch job. Basically, counting the BCIR, I've had this operation three times. Dr. Pollack used a camera to look inside of me and discovered that one valve was practically non-existent, hence why my pouch leaked. Surgery involved saving my original pouch (because it was large and functioned beautifully), creating three new valves and the new style collar around the upper-most valve. The new collar is great because as your pouch fills with fluid/gas, it tightens to prevent leakage.
I can't say enough nice things about Dr. Pollack (now deceased), the nurses and support staff at Palms. The Palms people were understanding, gentle, patient, humorous and they all know their stuff. They have the BCIR experience down to a science by determining that the three week average you spend in the hospital works for just about everyone. While the hospital itself is not large, it is beautiful and set in a very nice area. When I was there most of the patients had family (some with children) staying in the area to help them out each day. My husband stayed in the room with me for three days before returning home. Once you are mobile they allow you outside, IV pole and all. I spent a lot of time outdoors walking around the grounds and sitting by the water, so much so that I actually tanned.
I am now 55 and my age in only a number to me. I'm an avid scuba diver and have my advanced certification and plan on obtaining other specialty certifications in the future. I swim several nights a week at the local YMCA. I couldn't dive with the Koch pouch because it leaked, under pressure it was even worse; the BCIR doesn't leak at all, not even under extreme pressure at 120 feet.
I only intubate about four/five times daily and eat whatever I like. Nothing is excluded from my diet unless I just don't like it. I am so "normal" that even I don't remember what it was like when I was "normal" over 26+ years ago. I live in New Jersey and those three weeks spent away from home (alone for the very first time in my life) at Palms seemed like a monumental hurdle at the time. After surgery and resuming my life, however, I realized it was a small price to pay for such new found freedom. I haven't so much as had a cold since surgery over eight years ago. Almost nobody knows that I am not "normal" because I am so active. My only regret is that I wish I would have gotten a BCIR sooner when I first started having problems with my other pouch. But most importantly, I do not regret the time I invested in going to Palms where the experience is.
I have only been back to Palms once since my surgery and it was purely a social visit on my way further south. When they discharged you, you are pretty much healed and well on your way to recovery. There is no sensation around the stoma, burning or itching. It does not hurt to insert the catheter. I returned to my job of 22+ years full time after another month at home and haven't looked back since.