After 20 years of misery I am ready to seriously consider have my J Pouch disconnected and going with an ileostomy. Can I get some feedback on this?
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Sorry to hear about your long-term j pouch problems. If you could give some specifics, some of us on this forum could give you their thoughts and suggestions that could help you with the decisions you need to make. Should you decide to have your j pouch removed, you may want to consider a continent ileostomy (k pouch or BCIR) as an alternative to an end ileostomy. These two similar procedures eliminate the need for an external bag.
I have had chronic pouchitis for about 20 years. Cipro would alleviate the problem somewhat for a month to three months. Two years ago I developed an allergic reaction to cipro (hives). I am working with a GI doc at the Loma Linda, CA Veterans Admin. We have tried mesalamine without success then budesimide without success. I may give Humira a go as it appears to be a match for me. Don't like the risks with Humira. I am thinking of a j pouch disconnect (not removal) with a standard ileostomy. I am tired of being a slave to my failed pouch. Would like to hear from others with similar circumstances. Dean
Have you been double-checked for Crohns? When I was having problems with pouchitis, pain, etc., they did the blood test and I am somewhere in the Crohns family now.
I take Imuran and a probiotic daily. It's worked pretty well for me for at least twelve years.
Do what's best for you. And we will be here to support you.
I am so sorry to hear of your problems with Jpouch. I have had 2 bouts of pouchitis over the years and I can not imagine having to constantly live with it. I wish you the best whatever your decision is. I know you will think this is odd, but when my pouch is out of whack, I drink buttermilk and it helps. If you don't like buttermilk like I first did, you can lightly salt it and dip saltine crackers in it and eat the crackers. I also held my nose and drank it the first time I ever tried it.
I've been considering getting a permanent ileostomy too. I was finally doing well for a few months after I started using 2 packets of VSL#3DS daily. I've been back on antibiotics for around 3 weeks and made an appointment with my GI at Mayo's next week. I've been taking Norco for pain every since my surgeries 4 years ago. Lately I've needed to take the max dose prescribed to me plus have taken a strong dose of ibuprofen too. It was either that or go to the ER tonight. I have chronic cuffitis so know that might make things worse in the long run. I'm almost to the place where I'm giving up. I wish I'd had a permanent ileo from the beginning but was convinced this was the way to go. Some of us just have constant problems and mine are getting too painful.