hey tana so sorry you are in such a situation. But I would suggest that you re-read your initial post. I feel as if you answered your own question in it.
I am an ex-jpoucher. Had mine removed almost two years ago. It was a very good decision for me. You will find many other EXs on this board who all seem to be happy with their permanant ileostomies.
I wish you confidence in moving forward to get out of pain and regain your life.
best.
liz.

Hi Tana

I'm sorry to hear that you are going through so much, and it sounds like you've done a lot already to try to rectify the problem.

I had a jpouch for 18 years, had it removed 8 weeks ago and now have a perm ileo. I had issues with chronic pouchitis, incomplete emptying, tons of anal pain, etc.

While I am still in the recovery stage of things, I can tell you that I already feel much better than when I had my jpouch. The ostomy has given me piece of mind and quality of life.

Feel free to PM me if you have questions.

You might be a candidate for a kpouch and CC does them, just not sure they do in Florida.

Dr. Ernest Rehnke in St. Petersburg, FL does the BCIR, a modification of the K pouch. However, Crohn's may rule out a continent pouch procedure.

I know people with BCIR that have Chron's.

I didn't hear anything in your post about them offering an alternative of building you another pouch. You got 20 years out of this one so maybe you are a candidate for a 2nd. I suppose they don't want to do this because you have crohn's.............

Hi there, I hope to find you well! Im curious as to your decision and how well you're doing? I too am faced with the same decision however mines not as immediate. Hope you found yohrself well through out the holiday.

Still haven't made decision yet but I heard they are correcting alot of jpouches in Europe. Cleveland clinic more conservative with their plan of action. I am feeling better but arthritis and pains getting worse as I had to stop Remicade in order to prep for surgery. Everytime i see those ileostomy videos of replacing flange and bag I get cold feet about getting ileo back. It was horrible and now that I'm 40 I really don't want to go back to that. I just don't understand why they can't fix pouch and use that bio mesh and pouch plexy to correct the pouch. I guess they have their reasons.

Tana & Dani, I can appreciate the situation you are now confronted with, having fairly recently been there myself. If it had been an option for me, I would have looked into procedures to save my J pouch. I strongly recommend that you research your options, and consider getting a second and possibly third opinion before proceeding with surgery. I note that you are both from Florida. There will be a free seminar on the BCIR procedure in Tampa on Sunday, January 12 where this procedure will be explained and the surgeon, Dr. Ernest Rehnke, will be present to explain the BCIR and meet with you in person. Also, there is an online chat room hosted by them on January 7. Go to the BCIR web page to get more information. Dr. Rehnke did my surgery in April and the results were outstanding as was the care I received. I now have a good quality of life and the only exterior evidence is a button hole (flush with my skin) stoma that I cover with a small patch. I empty the internal pouch 3-4 times a day at my convenience with a small plastic catheter. Whatever your decision is, I wish you the best of luck.

Bill

I didn't want to read and not leave you with positive thoughts and prayers for your decisions.

One thing I will say: permenant ileostomy and stoma are a totally different animal to a temporary one. Through my nursing I have seen lots of perm and temp and the perm ones temped to be so better behaved and easier to manage in general. I know lots of people who chose to lose their pouch and are so glad and are now living healthy active lives.

I wish you both the very best of luck.

Thank you all for your advice and experiences. It's nice to know you're not a freak because you have half your guts missing:-) Well I am feeling better however being off the Remicade for preop prep has been difficult. All my joints and muscles hurt so bad I can barely get out of bed other than to run to bathroom with diarrhea. I have my great days and more bad days but we all do I guess with Crohn's. After 20 years of jpouch I think it's time for us to part ways.. I read that CCF did a bowel transplant in 2009? Anyway maybe that will be in our future and our children's future! My 7 yr old has Crohn's too but not bad thank God. I just want to live life to fullest like I did 20 yrs ago. But years of malabsorption (and I am a very healthy eater) caused me to develope Osteoporosis...smoking probably didn't help
Which I was told nicotine had a positive effect on UC too how ironic it was Crohn's which has a very negative effect? Live and learn. Well sorry to blabber on just very grateful to be alive at this point.

Dani, just wanted to know if I may the circumstances causing you to go back to ileostomy. It may help us figure it out?
Apparently I have paradoxical non relaxing puborectalis and in Manomotry studies I flunked two tests. I also have an angulation of intestine and they said my pouch is angulated??? Not sure what all this mean but the prolapse and blockage of80% is my biggest concern. What's your diagnosis