Sorry to hear you are going through this. I have a friend that has had her pouch the same amount of time as me (15 yrs) and she was just told she has a twist in her pouch. They told her the surgery would be exploratory  to see if the twist could be fixed and repaired or if a new pouch would be necessary but they wouldn’t know until they get in there. Are they giving you any options? Or is repeating the original surgery the only option? Please keep us updated on your progress. I know this has to be stressful knowing how much this surgery effected my life as I’m sure it did your too. 

Hi Donna. They gave me 3 options. One to try to form a new pouch but they are not sure if this is possible until they open me up. The second is to dysfunction the pouch and form a permanent loop ileostomy and the third option is to remove the pouch and form an end ileostomy. I think I’ve decided to go the third option. The thought of trying a new pouch scares me. Can’t seem to find any info on anyone having a second pouch and there are risks involved. Surgery wise the second option is less evasive but could still get problems with the dormant pouch over time. So I’m heading towards the third option as my surgeon suggested I’m relatively still young!  (52) 😂 and otherwise healthy so better to do it now than later on in life if the dormant pouch causes me problems. 

Jules, people certainly get 2nd pouches, sometimes called a pouch re-do. Since your pouch failure is mechanical a surgical fix has a good chance of working well, as long as the surgeon is skilled. If you don’t have access to a surgeon with the right skill and experience then an end-ileostomy is a better long-term option than a loop ileostomy. Even more important than the pouch being left in or not is the better functioning of an end ileostomy over a loop ileostomy.

Another option that has not been mentioned would be a BCIR or a K pouch.  These two similar procedures do not require having an external bag and have a high success rate.  There is a lot of information about both of those procedures on the internet as well as surgeons who do them.  I opted to get a BCIR when my J pouch had to be removed and have had excellent results with it.

Thanks for the advice Scott. My current pouch is also very dilated so don’t think they can fix it. My surgeon said she can try to form another one but not sure if it will stretch enough so thinking I might go with the end ileostomy. 

Thanks for for the info Bill. I was never given these options so not sure if there are any surgeons here in south Australia that perform these procedures but will keep researching!

Jules, the stretching that the surgeon is referring to is likely whether the remaining intestine will reach the lower pelvis after the failed pouch is snipped off the end. As long as they don’t pull it too tight, impairing the blood supply, it would likely work fine. They would have to have your permission to explore that option during surgery. It’s uncomfortable to enter surgery without knowing exactly what will be done, but sometimes that’s the only way to get the best possible result.

@Julesbirch posted:

Hi. I had my J-pouch 21 years ago after suffering from ulcerative colitis. The last few months it hasn’t been working properly and after several tests it appears to have a twist in it and is very dilated. My consultant has given me a couple of options. One being removing the j-pouch and forming a new one, although there are risks involved. Would love to hear if anyone has had similar experiences or had a 2nd j-pouch.

Hello Jules,

I was wondering what happened with your surgery. I am in a somewhat similar position and have had so much trouble deciding what to do. My pouch failed after 15 years.

Cheers,
Sarah