I am sorry to hear about the problems you are having with your j pouch.  You may want to consider having a consultation at Cleveland Clinic before deciding to have your pouch removed.  They are considered to be among the best in dealing with pouch problems.  In my case, j pouch removal was necessary due to high grade dysplasia occurring for a second time in the rectal cuff.  I did not want the bag (for quality of life issues) and was fortunate to find a surgeon who gave me a BCIR.  While the surgery was difficult due to adhesions from 3 prior operations, I had an uneventful recovery and was back to doing most of the things I enjoy several months after I was discharged from the hospital.

Be sure to research your options so that you are comfortable with your ultimate decision and feel free to send me a PM with any specific questions you might have.

Bill

What is a BCIR? Is that different from a pouch but not an ostomy bag? Thanks so much for your quick response. I just don't have the money or the health insurance to go to anyone at the Cleveland Clinic. I live in NY and went to Johns Hopkins in Md. for the rectum cuff removal and now a I have a lot of medical bill debt. I can't do it again

The BCIR, like the closely related kock pouch, is an internal pouch with a specially created valve that retains body waste until it can be conveniently emptied (typically 3-6 times a day) using a small plastic tube (catheter). It is created using a short section of intestine and does not require an external bag that can leak, cause skin irritation or present other quality of life issues.  These two procedures are used as an alternative to an ileostomy and for those with problematic ileostomies.  The BCIR has a very low failure rate (6%) and the most common complications are valve leakage (corrected by surgery) and pouchitis (treated with antibiotics and probiotics).  Unfortunately, these two procedures are not widely known and sometimes doctors discourage their patients from having them for various reasons. A lot of information is available on the BCIR website (based in Florida): www.bcir.com.

It is my understanding that the Cleveland Clinic does remote consultations using the patient’s existing medical records. This might be a good approach considering your financial and insurance situation. Also, your doctor might be able to contact them for recommendations.

Unfortunately, pouch removal with any of the options (end ileo, BCIR and Koch pouch) is major and expensive surgery and all have risk for complications.  You will want to be sure that nothing else can be done to reduce or eliminate your pouch problems before deciding to have it removed.

Bill

I wouldn't even consider this bc of the possibility of pouchitis. This is my problem, pouchitis, antibiotics and probiotics do not work with me. I am going for a sigminoscopy on Thursday to see if the problem is anything other than pouchitis but I doubt it. I am strongly considering removing the pouch and getting a permanent ostomy outside bag. The pain from the pouchitis is just unbearable! This whole thing has been a nightmare, I'm seeing a psychologist specializing in chronic pain yo help me deal with all this mess.