Reversal of J Pouch to Permanent Ileostomy

Sorry you are going tnru all of this.

I too was concerned about going to an end ileostomy as my temp one was horrible. I was in such sad shape with my j-pouch I took the word of others than a perm one was better. It is better than the temp ileo and the experience has been much better than I hoped for. I wish I would have had the surgery 18 months before I did.

I take some generic imodium and use some fiber, depending on what I eat. My diet is much better and varied. I eat just about everything but mushrooms and salads. I get plenty of fresh fruits and veggies in a daily protein smoothie so don't miss out on the nutrition. I have a better diet now.  I take nothing else like the antibiotics and everytging else you are currentky taking. I don't miss the antibiotic side effects and using suppositories.

I empty the bag around 6 times a day and that is not a full bag. I change the appliance every 2-3 days and the norm is twice a week. I empty it at home and out at public restrooms. I carry a little bottle, several ounces, of water with me to assist in empting it. You might have done this with your temp ileo. Not hard for me as I carry a purse. 

Let me know if you have anynother questions.

After 20 years of having a j-pouch, I gave up and had it removed. I was having discharge that was very acidic and and kept me sore and hurting a lot.  I am so glad I got a permanent ilio. I am not having the problems I had when I had the temporary iliostomy. Sure, I have problems ever so often but my life is better without the j-pouch and the IPD. (Intestinal pouch disease). I do have to be careful about what I eat. No salad or other fibrous foods but even with that it was so worth it to me 

the k pouch is another option.  check out the k pouch korner for more info.  

I feel the same as TE Marie and Holly HM.  I'm feeling so much better, after 24 yrs of probs. w/the pouch and putting off removal - I've had pouchitis, severe cuffitis, abscesses, fistulas, and a dx change from UC to Crohn's.  I still have my pouch, but have a permanent ileostomy.  The pouch is going to be removed this year at some point.   I have a few dietary restrictions, but it's more out of fear of the unknown and learning, since I've only had my ileostomy 6 months.  I do eat salads, drink wine, eat most vegees except I haven't tried corn and a few other very fibrous ones, etc.  You just have to chew very well, but you should be doing that with a jpouch as well, so you're prob. used to it.   The permanent/end is so much easier to deal with than the loop, although it is taking me time to get all the "equipment" - wafers, rings, paste, etc., worked out.  And like the others - it's a definite plus not dealing with suppositories EVERY night, antibiotics, EUAs, etc.  Have you talked to your docs about having an end ileostomy made and let your pouch rest and see how you do with the ileostomy, and then making a final decision as to what to do?