Pouch vs Bag

Wondering if people can share their experience of when they got their colon removed if they went with the pouch or bag?

I am getting my colon removed on Thursday and just wanted to make sure I am making the "right" decision. Liver specialist certainly feels going with the bag is the better long term solution. But will support either decision.

I saw some stats on the net that actually are better then I thought for patients with psc going with the pouch. The 1,2,3,5.10 year chances vs non psc patients is worse obviously but certainly not only 25% as I have been reading on various sites.

I have had psc since 1997 as well as uc. My psc is asymptomatic (spelling?) right now but we all know things can go sideways very quickly. So I know my liver is ok to try a pouch (even the liver specialist says so) but obviously risk of liver inflammation with pouchitis and damaging it which is not what I want obviously. But to not be able to at least try the pouch and say what if eats at me. As one of the nurses said - if pouchitis continues for a while and you keep getting it - then do the permanent surgery. Obviously another surgery would suck....but a least I can say well I tried it.

Any how - if anybody can share their experiences for me I would be so ever grateful.

I got a j-pouch in Dec. 2006. Keep in mind that the recovery is going to be hard. The first month was horrible. Your body will take several months trying to get used to what just happened. By the time I finally got used to the bag, and getting 4-5 days without a leak, it was time for the resection.

Having a jpouch is not problem-free but it beats the daylights out of having UC or a permanent bag. I can't judge about the effects from psc on it.

There is wonderful jpouch site I highly recommend- jpouch.org.

I have a 70+ page diary of my struggles with UC, my jpouch and psc. If you want to read it, let me know. It can give you a much better idea of ways to cope than I can provide here.


Hi Riz

I had a colonectomy four years ago and had a J Pouch surgery two years later. While I had the bag I was dehydrating which caused kidney damage so I went with the J Pouch and that had stabilized my kidneys. I have just been diagnosed with PSC today so am a bit off my axis right now. Scared, frustrated and generally feeling sorry for myself but will bounce back once I start processing and moving forward. I am not sorry I had the J Pouch Surgery at all and would do it again if I had the choice. I did show signs of pouchititis recently but antibiotics helped me feel better. You might want to check out the J Pouch Community but keep in mind that the people who go on line here are having some problems. There are many, many more people who have had a J pouch and are not having problems hence they are not getting support from the J Pouch support forums. Hope this helps and best wishes for which ever decision you make about pouch or bag.