don't know if I am getting better

If you are still having frequency, urgency, back pain and diarrhea, I would say that the meds could be causing the diarrhea and frequency (meds do not agree with you) or the pouchitis is not responding. After a few days on an antibiotic that you are responding to, you should see marked improvement in your symptoms.

That being said, the stricture always complicates this as I have the same issues as you. Can you try cipro, augmentin, flagyl xifaxem (expensive)? These are other options that may help you.

The stricture, as well as inflammation at the anastomosis or cuff if you have it there also, can cause back and behind pain, as well as leg pain.

I think you need to contact Dr Shen to let him know your symptoms are not improving and you may need to try an alternate antibiotic. Cipro so far has worked the very best for me, but it too has side effects like possible tendon ruptures etc. I also had pretty good luck on augmentin for a long time but it too is one
of the big gun antibiotics.
Good luck. I hope you get some medical relief soon as I know pouchitis can be so disabling.

Thank you, Jeane. I am going to contact Dr. Shen. I needed to hear that from someone else.

Please let us know how you are doing. Best wishes.

the "normal" course of pouchitis.
Hello,
I have been miserable for almost 3 weeks, (back, leg, butt pain), urgency, general malaise and fever. I am worse today than when I started the Tinadozole. Dr. Shen just Rx Augmentin. I hope to God this gets better. I can't work or even think a lot of the time. I don't see anything posted about someone being this sick for so long. Please, I'd love some feedback on it how long you feel like s****.
This is my first real bout with PI. It is worse than any UC flare I have ever had.
Thanks for listening out there!
Joanne

Been there..... going on 18 months of it...mostly cuffitis issues in my case, but I chronically feel like crap MANY days. The antibiotics may make you also feel lousy so remember that (especially muscle aches). Have you tried Cipro? I have not re-read the original thread but it has REALLY helped me with my pouchitis. Now if only I could squelch the cuffitis. Hope you get some relief soon.

Auntie JoJo, just reading your post...it sounds like you have only been on one antibiotic so far, is that true? If it's only been Tinadozole, and it wasn't working and made you nauseous, I would have suggested you get off it immediately and switch to another antibiotic. Augmentin should be very effective so I'm glad you are starting that now. Were you on either Cipro or Flagyl to start? Or was Tinadozole the first antibiotic prescribed? It's not normally doctors first choice for pouchitis, although I know it is effective for some people. From lots of experience, you should get at least some relief from your pouchitis within the first couple doses. Flagyl is one that did not work for me right away and made me feel sick so I got off that quickly and back to one that I knew worked.

Hope you start to feel better today!!

I wish you the best,but my journey w/ pouchitis hasn't been so fun. 1 month after takedown I got it and still have it since Jan 2003. I've taken flagyl everyday for 10 years. I've tried Cipro,Xifaxen and combos of the 3. But If I stop flagyl within 5-10 days I feel horrible. Now I'm dealing with the nerve damage in my feet and legs caused by longterm Flagyl. I stop and the tingle and numbness gets better but I can't stay off very long. Don't know where this is headed the nerve problem started this Sept. Hope your outcome is better than mine.

Thank you everyone for your replies. It is so freaking comforting to know I am not alone. Well, Tinidazole was Rx because I had joint inflammation with Cipro. Dr. Shen has been on vacation, certainly he is entitled to it, but I have NOT been able to get an Rx from anyone at CCF for Augmentin since Dr. Shen recommended it to me in an email 3 days ago. I had some very old Augmentin stashed away in my medicine cabinet, took one, 875 mg and within 12 hours felt better. I am certainly not recommending taking antique Rx but I was desperate. The stricture is still a problem but the fever debilitating pain are gone.The pain I have now I think can be managed with plain old Tylenol. I am thinking we are all on the cutting edge of UC therapies and many times docs try things based on a small data base of information. My father and his brother had UC (dad died at 91 of COPD - never smoked). His brother, 88 is doing fairly well. 2/3 of my kids have UC and both are in remission thank God. I seem to have it the worst. I do believe that there is a connection between where my head is at (anger, resentment, anxiety)if it is severe, and flare ups.

Thanks for listening, everyone and have a Happy Thanksgiving.
Joanne

Thanks all of you for taking the time to respond. I am on Augmentin and better. Even the stricture is better and I suspect the rectal cuff is less inflamed.
I hope you all had a wonderful Thanksgiving.