Pouch removal

Hi Lars,

Welcome to the forum.  As a new member, you should read posts from others who have had problems similar to yours and could offer suggestions that might improve your situation.  These posts could also help you make a list of questions to ask your current surgeon and the one you will be seeing shortly.  My thoughts are to make an extended effort to keep your pouch before deciding to have it removed.  Hopefully, your new surgeon has lots of experience in treating j pouch problems and can offer some things to try before having surgery.  If it does come down to needing removal of your j pouch, there are two alternatives that do not require having an external bag: the k pouch and the BCIR.  There is a lot of information on the internet about each of these procedures.  When my j pouch had to be removed, I was fortunate to find a surgeon who gave me a BCIR.  I strongly did not want an ileostomy, but that was my personal decision.  I now enjoy an excellent quality of life with it.  I did not notice any additional loss of nerve function after my j pouch was removed.  Here’s hoping that you will soon have improvement with whatever you decide to do.

Bill

What is BCIR?

A BCIR (Barnett Continent Intestinal Reservoir) is a modification of the K pouch and it functions exactly the same.  The BCIR has what is called a “living collar” which is a short section of small intestine used to stabilize the valve.  Both of these procedures have a success rate in excess of 90% and have a very high rate of patient satisfaction.  These procedures offer a very good quality of life for those not wanting to experience issues involved with the external bag.

Thank you Bill for your reply. 

Ik have been looking the internet for a very long time, and Reading about other experiences from others. The surgeon that im seeing shortly is a little bit more experienced with removal of the pouch, i dont know about treating problems. I do not want to use the medication again that i used to treat my uc. And you said that the succes rate of the k-pouch and the BCIR is 90%. I have had so much misfortune that i dont want to try something like that. But i will look into those two thing. 

Also i have a lot of pain in my small intestine the last four or five days. Some time ago i had an mri to check if anything was wrong because ik had a lot of pain lower in my stomach when i got the mri it had almost disappeared and there was nothing wrong. but now i feel something different. Now ik feel the pain higher in my stomach It feels like a narrowing or maybe it is an inflamation. I am calling the hospital where i had the surgery, i think something isn't right and has to be looked at. 

Lars 

I have just been looking into K-pouch and BCIR, but i think these procedures are not done in the netherlands. 

I didnt search enough to have said that. This surgery has been done in the netherlands, here it's called the continent ileostoma and the kock pouch. It says that these surgerys are rarely perfomed these days.