I have had a BCIR for 5 years following the failure of my J pouch (which lasted for 30 years). There was no doubt whatsoever that I did not want to get a permanent ileostomy.. Like you, I did my research on the K pouch and BCIR and was fully aware of the complications that some people have had with these procedures. This did not discourage me from getting a BCIR since I learned that most complications can be successfully corrected and that only about 6 percent end up needing their pouch removed and going to an ileostomy.
During the first 3 months following surgery, I had pouchitis and some leakage of pouch contents. This was attributed to the pouch expanding to its full size and the valve “maturing”. After that, I have had no problems and rarely am aware that I have an internal pouch. I am able to eat almost anything I want, being sure to chew it well. I can do any physical or sporting activity I want and experience intimacy with no embarrassment or limitations. I can go up to 8-12 hours between intubations which means I do not have to be concerned where the nearest restroom is located. I typically empty my pouch 4-5 times every 24 hours and can get a full night’s sleep. The stoma is located below the belt line, 2-3 inches below a traditional ileostomy stoma, is button hole in size and covered with a small absorbent dressing. It is not visible under the tightest of clothing. My supply costs are under $200 per year and I carry my small catheter in my pocket or a small case when I am away from home.
The BCIR program where I had my surgery has a website (www.bcir.com) where you can lots of information about the procedure and request an information packet that has a list of about 300 people with BCIR’s that you can contact about their experiences. Please feel free to send me a PM with any questions that you have. If you provide me with your phone number, I can call you back.