Seems after a year and 9 months I will be going back to the Ostomy bag. Fighting pouchitis, abscess, fistula and too much pain, I'm throwing in the towel. I can't sit, eat, sleep or work. My wife is worn out watching me. Burning diarrhea most evenings, in and out of the tub, the creams and all the pills. Dietary solutions have been exhasted. Loss weight and no energy. It is not worth it. Latest surgery to remove abscess was a waste of time. Looking forward to some sort of life. I actually got pretty good with the appliance even with more than average skin irratations. Seems I am allergic to some adhesives. Meet with the Surgen on Feb 27 to schedule in 3 weeks. He has offered to refer me for another opinion in San Francisco but I think I am done trying. Dr Myers has been performing j-pouch surgery for over 12 years. He has only done 2 reversals in that time. Funny how both of them have been in the last year. Oops. I am grateful to have an option to return to as this life has been hell.

Hi Bruckley,
I too feel like you! It has been 3 1/2 yrs for me and I can't take any more. I meet with my surgeon on March 6th. But I didn't have real good success with the bag either (location was off, making it hard to have a seal). Everyone that has the bag seems ok with it though.
I will be anxious to hear your out come. Good Luck.
Jan C

Thanks for good wishes, you too. That is a long time to struggle. It is not an easy surgery, scar tissue, previous hernia, loss of intestine material. Anything has to be better in the long run. I was told about 92% success. I guess someone has to be the other 8%. If I hadn't tried, always would have wondered. Hopefully a new location will work better for you.

Hello Bruckley and Jan C,

I had my JP reversed about a year and a half ago. I had my JP done back in 1997-98 and the first 4 years I had no issues, then all hell broke loose and things got progressively worse. After fighting it for a few years I had enough and had it reversed in July 2006. But I left my JP in, I’m only diverted. Unfortunately, my surgeon needed to open me up to remove a bunch of adhesions but I opted to leave my JP in tact.

Depending on what your issues are, you may want to consider keeping the JP and going with a diversion. I’ve had no problems and I still have the option of going back in the future. You never know when someone will come up with a sure fire cure for Pouchitis or Cuffitis.

I have absolutely no regrets, my life is SO much better with an ostomy. If something comes along and I’m able to go back to my JP, great I will. But until then I’m perfectly content.

Feel free to PM or email me if you want to talk.

Good Luck!

I am one of the rare (so I am told) people for whom diversion did not work. I initially kept my pouch in and got a diverting end ileo, but I actually got worse - developed new symptoms and didn't get rid of any of the old ones. 18 months after the diversion surgery I had my pouch out.

Once hte pouch came out, I was healthy and happy. My end ileo is a dream compared to the temp one. I hardly even know I have it any more. It is just a routine part of my life. I change my appliance every three days, other than that my life is no different than any one else's.

Since the removal surgery, I've been hiking, kayaking, swimming, traveling, had one baby and am currently pregnant with my second. The ileo definitely gave me a freedom I didn't have in the 3 1/2 years with my pouch and chronic pouchitis.

I take no drugs, eat what I want and in general am just a healthy, happy 30 something. I hope whatever you decide to do brings you the same kind of success. Please let me know if you have questions.

Thank you JillM and Bill, Those words of encouragement helps to know of the good health that can come out of this and to finally feel better. I meet with my surgeon on 3/6 so next week - will keep you posted.
thanks
Jan C

Thank you for such great encouragement! As a result, actually feeling better about the whole thing.

Might actually have a nice summer. Looking forward to doing some camping, traveling.... living.

I love the support on this forum and the time people take to tell their story.

Will post here for update and wishing the best for you too, Jan.

Anyone else, please jump in, with another surgery in our near future, it would be good to hear some more experience and hope.

Back from the Dr today. Reversal surgery on March 13. He is going to make the call to remove J-Pouch at that time depending how tight it is. Leave it in if risks are too high.

Now that the end is in sight, self doubt and fear start sneaking in. Maybe if I didn't eat this or did eat that... This is where Faith is tested. Fear and Faith cannot co-exist in the same moment. It only seems so.

Bruckley,

There is always going to be doubt around a big decision like this. I fought my JP issues for a few years and went through a "why me" phase for far too long. Sometimes things are not meant to be. For me and you, the JP just didn't work out.

You seem to have accepted this and that is more that 50% of the battle. Going into it with a good frame of mind really helps with the pre-surgery anxiety and the post-surgery recovery. Prepare for your surgery and look forward to good days once you recover.

I'm here if you ever want to talk. I've been there and back...

I agree with Bill...what you are feeling is normal. Don't blame yourself...as with UC, nothing you did or didn't do created the situation, it just is what it is. YOu are taking steps to move on and while that can be liberating, it is also scary as heck since there are no guarantees. If you can go into this surgery thinking of it as a step toward a healthier life, I think you'll come through just fine.

As Bill said, if you ever need to chat, let me know. This decision was far harder than the initial decision to get a j-pouch and I understand all too well your feelings of doubt.

Bruckley...best of luck to you. I'm glad you have this option. Here's hoping life just gets better and better for you!

Bruckley, You and I must be thinking the same thing. I to have wondered if I would have watched my diet more or did this or that I wouldn't have pouchitis and would be keeping my j pouch. My gastrenology doctor just started me on Xifaxan yesterday. She's with OSHU and is trying to do something to change my mind. Today I had a pretty good day - but new med's and always wondering what the next day is going to bring and knowing that if I keep my j pouch I will have to continue antibiotics to keep some what going (just like UC) for another how many years before I give up again. I think I have come to a conclusion I want to give up j pouch and move on in life.
Jan C

I've been having lots of problems with my pouch too, and was considering a removal. I just can't get past the thought of having another ostomy. Having the temporary pouch wasn't exactly a dream come true, but I was a lot heathier. I used to exercise all the time, will I be able to exercise with a pouch? I really like to swim, and would like to get back into weight training. I can't exercise because of my health, and really want to get back into shape. What limitations do you guys have when it comes to physical activity?

I've been given no restrictions with my perm ileo. I've been swimming, hiking, kayaking. The summer after my removal surgery I worked witha personal trainer for 3 months to get back in shape and did nautilus equipment, light free weights ('cause I"m a lightweight, not cause of restrictions) and cardio activity 3-4 times a week. 4 months after pouch removal I did a 7 mile round trip hike to Ramona Falls at Mt Hood OR.

JasonPA who used to visit here has a perm ileo and he plays full contact ice hockey every week. There is a documentary about a US attorney practicing in Thailand who is on the amatur Thai boxing circut with his perm ileo. For the most part, you are only limited by your mind with a perm ileo - if you think you can do it, you can.

Mike,

Since having an ostomy I've got myself in better shape than I was before I had Colitis (and I was 26 then, turning 40 in May). My ostomy has given my life back, I'm not tied to a toilet, I spend all the time I want with my Wife and Kids with no painful bathroom visits.

I swim, lift weights, and ran in a 5k race a few months ago. So I have a bag attached to me, big deal… my quality of life is much more important. Once you get past the "ostomy stigma" your OK. But you really need to be mentally prepared before you go into it. Make sure you exhaust your medical options first.