I have been dealing with pouchitis for the past year. I have had my J-pouch for 10 years and have had no problems. After blood transfusions, iron infusions, multiple hospitalizations for pain management I am getting so tired. Every time my GI suggests colostomy I cry. When I had it for the 2 months before my takedown I was very depressed. I see a specialist in St Louis next week and hopefully I can get answers. Cipro, Entocort, Flagyl, Rowasa, & Prednisone nothing can even touch the pain that I am having. Have been on Percocet for the past 4 months. That is even starting not to help. Any other suggestions?

sully,

Have you tried other antibiotics like xifaxin or augmentin? And Pentasa which is used to treat Crohn's Disease?

You mention serious pain issues and to be honest I have never had significant pain issues with pouchitis, more of a crampiness and irritation and certainly nothing even remotely resembling the pain associated with UC which I dealt with for 20 years. It makes me wonder about your diagnosis. Have you had any testing to determine possible Crohn's Disease?

I probably don't need to ask this, but by any chance are you taking any NSAIDs for your pain? If so, they canbe the root of your problems. It surprises me how often the docs do not catch that simple issue.

Plus, if your pain is due to obstructing adhesions, narcotics and antibiotics can actually make things worse by thickening the stool and/or slowing the gut.

Jan

Thanks guys! I am now trying Cipro & Xifaxan. If that doesn't work then trying Remicade. If that doesn't work then I will be off to the Cleveland Clinic. Hoping for one of the other two options to work. My GI Dr seems too eager to remove my pouch but I'm not quite ready to part with it yet. It's nice to have something like this to talk to people who are going through some of the same things! Thanks again!

hello,
New to this website.. I had a quick question.. for those with J-Pouch and are suffering from pouchitis.. would you mind sharing the symptoms for that?

Try this link. Also search this forum for symptoms. There is lots of info.


http://j-pouch.org/eve/forums/...51071921/m/787108343


Best to you

Derek

2 doses of remicade and I was put into remission. Good luck. It sure is not what we signed up for.
susan

allycat i know you have been someone having issues but were you ever a rotator of antibiotics too?i am a antidependent pouchitis jpoucher..been that way from day one i think..i rotate antibiotics..only way i stay above water..did that fail you and thus the remicade?

i had remicade as last resort when i had uc did nothing for me than..just trying to remember if you rotated before or just kept getting pochitis/

i am soo happy for you that you are in remission of pouchitis..its the best news..

rebe

sully i can empathize with you for me pouchitis is unbearable pain from a feeling of extreme soreness,i shutter in pain when i have to go..there was a time in my early history where the pain or soreness continued indefinetly after going and i would pace the floor in pain and i was on vicodin constantly.. absolutely unbearable..now i rotate antibiotics which stop the pain/soreness when going..but must rotate because my body adjusts to the antibiotic..without them i am dead meat!

pouchitis seems to come in different flavors with different symptoms so it seems..i do not have chrohns ..but that pain/soreness is my devestating symptom with going a lot....i do not have fever,cramps,fatigue, or inflamed on going pouchitis on my pictures as many do but it is classified as chronic pouchitis anyway.. for example both djb husky and i rotate antibiotics but do not have same symptoms it appears..

i highly recommend cleveland clinic and dr. bo shen..i think it is worth the effort..he probably has seen it all..

my prayers and good wishes for a solution go out to you..i feel your pain..my pouchitis when i have it as bad as anything i had when i had uc so i get it..

rebe

I too am suffering with chronic pouchitis -- but mine has been since day one with the pouch in June of this year. I am reading this entire website now trying to catch up on what I don't know -- which, like my doctor, is a lot!

Your post caught my eye because you wrote that you cry when your doctor mentions colostomy. In contrast, I would give anything to go back to my lifestyle with the bag. As gross and inconvenient as it could be at times, I had a much more normal life then. Now with the pouch I just spend my life depressed and in pain in my bathroom.

But I see that you only had yours for a couple months and want you to know that that might not be what you would be living with in the case of a permanent ileostomy. I had one after my initial surgury for 6 months because I had almost died during surgery (toxic megacolon, everything fell apart, ICU, lucky to be here). I think it was done more like a permanent ileo because of my situation. Then my doc talked me into the jpouch as a better long term option. So had the surgery to make the jpouch and create a new temporary ileostomy. Now that one was a nightmare! Normal life came to a halt again and I spent night and day taking care of a hellish mess, bags wouldn't stay on, painful open sores, you name the problem, I had it. My doc said it was due to the type of ileostomy he had to do because it was a temporary until the final takedown. If I had to go back to that, I would say no way too! But if I could go back to the first one -- hell yes! It was way better than my life with the jpouch.

Just another perspective to consider. Hopefully, you 'll get this under control and enjoy another 10 problem-free years! But if not -- don't loose hope, it may not be as bad as you think :-)

This message has been edited. Last edited by: Ubermommy,

Hi Rebecca,
No,I never rotated antibiotics but for whatever reason beyond anyone I became antibiotic resistant. I hope the remicade works for you but to be honest after my second dose I already made up my mind that I did not want to be on it long term and if pouch removal was the case then so be it. For some reason too G-d has been looking down at me and things are going well. See my post on my pouchitis regime cause I now take a lot of anti-inflamatory suppliments and am under the care of a Functional Medicine doctor.
Susan