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I have been having ups and downs with my general health since my take down. My pouch functions well and my quality of life has improved significantly, so I am happy that I made the decision, after 8 years of failed medication management of Ulcerative Colitis, to have the surgery. Now, I experience several bouts of an inflamed Cuff which makes for uncomfortable situations. As soon as I feel symptomatic, Apthous Ulcers appear on my tongue, and gums, and make for excessive aggravated eating ability. I will go on a 10-15 day cycle of Cipro, WONDER DRUG, and everything will clear up, but instantaneously after the last dose of Cipro, inflammation in the cuff and Apthous Ulcers return. I will then do a Cipro/Flagyl combo, and it is knocked out again. I have tried VSL #3 DS and have not had the significant healing as when on Cipro or Cipro/Flagyl. Prednisone works wonders too. I don't know if there is something else I should be doing? Am I going to be antibiotic dependent? CT Barrister has found his niche and I wonder if I fall into his category of patient. Is there a holistic approach that I should be trying? I am open to anything! Please let me know if anyone has any recommendations for anything! I am in South Florida and if anyone knows of any doctors down here that have experience, I would love to hear about them too.

thank you in advance to anyone who has ideas!

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Even though antibiotics work for you, they may not be addressing the underlying problem of cuffitis, where there is continued UC in the retained rectal cuff. I am wondering if you have tried mesalamine or hydrocortisone suppositories for this, as they are the usual treatment for cuffitis, not antibiotics. Since you also get oral aphthous ulcers, perhaps oral mesalamine is needed, such as sulfasalazine or Pentasa. Of course, you can also get into Imuran, methotrexate, and/or biologics too.

 

Something to discuss with your doctor to be sure, unless you want to be on antibiotics full time.

 

Jan

The only thing that seems to have a positive affect on, what is left of, my GI tract, is the antibiotics. They firm me up significantly and reduce the frequency in which I need to use the bathroom. I sleep through the night when I am on a cycle of antibiotics. I have tried both Canasa Suppositories and Anucort Suppositories, they have minimal effect, unless I am not using them for the correct duration. I take Bentyl and Lomotil 3 times a day, but again, as soon as I stop the antibiotics, the symptoms return. 

I agree with Jan, as I usually do. If you're getting aphthous ulcers in your mouth (and they do hurt like heck!) then oral IBD medication would probably be worth discussing with your doctor. Like CT I'm on antibiotics full time, with good success over a period of years, but that's generally intended for pouchitis that won't stay healed otherwise.

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