I am so tired of:

-The frequency of those embarrassing, loud, messy, “shotgun blasts”.
-And how many times a day I have to scrub toilets - at home, at the office, at friends homes.
-The pain of butt burn, the necessity of wet wipes and the need for cream.
-How one minute it feels like I’m trying to push through a straw, and the next, diarrhea.
-Devastating nighttime leakage.
-How much of my life is still spent in the bathroom -- or needing to find one.
-How many times I’ve needed a commode and found it filthy, or a door that doesn’t lock.
-How I have to try to not think about how lousy I’ve got it or I’d go insane.
-How I struggle with depression.
-How it feels that with chronic pouchitis I’m only slightly better off than I was with the colitis.
-How sad it makes me to realize that at 5 years after takedown, this is probably what I’ll have to live with for my next 40 years.

I apologize for the downer, it’s been a tough last 8 years. When I read posts from people looking forward to their takedown, it’s all I can do to bite my tongue.

I'm so sorry you are having such issues. It is awful to be so hopeful about takedown and then feel so disappointed.

You don't mention what you have tried to fix these problems. 5 years is a long time to suffer - I'm sure you have been working on an answer.

I felt much the same way when I decided to get rid of my pouch. I know that isn't a popular choice, but it has been a godsend for me. Every issue you mention is no longer an issue for me. I chose an ileostomy, but there is also the k-pouch - have you thought about these options? You most certainly shouldn't have to keep the status quo for 40 years...

I agree. Granted, even those with well-functioning pouches will never be "normal" again. It is just not the same as having a colon, and yes, carrying around things like wipes and creams is sometimes necessary (I know I do!). However, if your quality of life is that poor, maybe getting rid of the pouch is an option. It sounds like it would eliminate many of the issues you mentioned. The K-pouch, while I'm not very familiar with it, may also be an option. Don't settle for living this way!!!

As much as I dislike my current condition, I had a bad time with my ostomy and dread the thought of going back to it. I made an appointment today with a new gastroenterologist in hopes that he can help me. To answer the question, over the past years I've tried most every antibiotic, probiotic, anti-spasmodic and narcotic out there. I fear I may not have a choice but to continue living this way.

I am able to live above my sorry condition much of the time, but then again it really gets to me some days. Anyone having success with their pouch should not take it for granted, this surgery does not come with a guarantee.

DId you have a loop or end ileo? I was in the ER or hospital every week with my temp loop ileo, but have had no problems with my end. It is a world of difference as far as I"m concerned.

That said, no guarantees come with the ileo or k-pouch either, so you have to be comfortable with the possibility of things going wrong...

I hope the new GI has some answers for you.

Coloradoguy,
I never realized how much I deal with until I read your post and everything you listed I struggle with as well. I guess I don't think about it because I know I'd go crazy. I just deal with it as it happens and try not to think about how many times I have to deal with it. I had nothing but problems with the bag so I don't really consider going back to it until it's an emergency and there's no other option.

One thing that has helped me is following someone's advice from here a while ago about not drinking when I eat a meal but waiting 30 minutes or so afterwards. This has really cut down the explosive "shotgun blast" gas. My general practioner also prescribed a digestive enzyme to help cut down the gas.

I still struggle with all the other things and some days are worse than others. I'm usually in a lot of pain by night time (I assume because I go so many times trying to get the pouch good and emptied to avoid leakage when I sleep). I do have pain every day in some form or another but like I said, it wasn't good with the bag.

Everyone has to decide how much they're willing to put up with. I hope you can figure something out to help. Try what I wrote about and see if it helps with the gas.
Take care.

Hi Coloradoguy: You sound like I did about 2 years ago. I was miserable. I would drive to work, take a Tylenol w/codeine, manage to make it through the day so I could go home and take another pill. I lived on white rice because everything made me sick.

I finally started seeing a new GI and we determined that all my post-takedown issues were Crohns related. I was always told I had Colitis. He did the promethius blood test, a camera endoscopy and examined all my old records and everything pointed to Crohns, not Pouchitis.

I started Remicade last summer. I go about every 6 weeks and finally feel good. I still have a bad day here and there but most are good.

Talk to the new doctor and make sure he/she looks into any possibilities for you. Hopefully, a new pair of eyes will help.

Good luck,
Pam

Been there, and I understand how you feel. Every point you made is a valid byproduct of J-Pouches. Some are well behaved and some are just angry little buggers...

Talking about it with the people close to you and venting here are very good therapy.

See this new GI and hang in there.

Coloradoguy,
You sound just like I did a year ago, I finally went to ccf and worked with a GI, Dr. Bo Shen. After exausting lots of meds then getting scoped many times I finally threw in the towel on the jpouch. It took me 9yrs to get to that point. I didn't want to go back to the bag either but thats what I have and I feel excellent. I went into surgery expecting to get a kock pouch and they found I now have crohns so when I awoke from surgery I had a permanent ileostomy, I was told this was a possibility before surgery but either way I wanted the jpouch out no matter what! I had enough, even though I was upset about not getting the kock but I was glad to be rid of the jpouch. No more pouchitis,butt burn, stomach aches,leaking and no more meds other then a bone health pill once a week.(thank you prednisone) Life is great now even though my future is uncertain because of the new dx of CD. I haven't had no issues with the cd.

I really hope you can get a handle on the jpouch with the new gi, the jpouch can be a wonderfull thing for some but it just didn't work for me.Good luck and best to you....Don

Gosh I feel so sorry for you guys!! And thank you all for caring, it sure is nice of you.

JillM - I guess I think I had a loop ileo.
Olive Oil - that's wierd about the drinking. Why would that matter? Is that digestive enzyme supposed to help with the blasts?
Pam and Don - I was told 8 years ago I didn't have damage further up so mine was colitis. Can it change to Crohns?

It seems that a lot of people have problems with their pouches. There needs to be some serious medical advances in this area, and I hope they come soon!

Yes, not drinking with my meals has really helped me. It was a suggestion a nurse made to one of our Jpouchers that really helped so they sharred with all of us. The enzyme helps me as well. I hardly have gas at all now when before it was terrible.
Give it a try. I didn't think it would do any good but it has for me.

I don't think your disease can change but it is difficult to diagnose and so the diagnosis might change. I live in uncertainity about which one I have. Pathology says UC but my surgeon believes I have Crohn's and he says it's very difficult to distinguish. So I don't really worry about it...whichever disease I have doesn't really matter to me as long as I can keep the symptoms under control. It used to drive me crazy not knowing for sure but I've accepted it now.
I hope you get a handle on things.

I was told it was Colitis for 17 years. After the J-Pouch, I should have been better if it was Colitis but I had all these new symptoms that I never had with Colitis.

I have a perianal abcess, had fissures, had EN (a rash on my legs), still had the runs and terrible cramping. I was anemic and exhausted all the time. So these symptoms plus the blood test which favored Crohns, the capsule edoscopy which showed irritation in my small intestine, etc, led the doctor to diagnose Crohns instead.

There are quite a few people on this site who were diagnosed with Colitis and after having the J-Pouch, their diagnosis was changed to Crohns.

Don't give up hope yet. Hopefully, the new doc can help turn things around for you. I'm doing pretty good on the Remicade and would have a very tough time going back to the bag. I was allergic to all the adhesives and the only thing that worked for me lasted a day or 2 so I had to change my bag every other day to avoid leaks and raw skin.

Good luck. Pam