Should I choose surgery for ulcerative colitis?

     Wow...reading all these posts whether to have surgery or not is mind-boggling.  This disease is sooooo individual.

     I personally know five other people who were diagnosed with UC and one who had Crohn's (my very close friend who passed in 2005 from complications of Addison's).  I am the only one who had surgery.  One woman was on 6MP for ten years and enjoyed a wonderful remission while on the drug.  For some reason or other, her GI doctor took her off it and she immediately flared.  Right now she is back in remission while only on Rowasa enemas and VSL#3 .  The four others have only had one or two flares of UC (they were diagnosed through colonoscopies), the UC cleared up on its own and they are still in remission!  None of them are on maintenance drugs. 

     Sometimes I wonder if they were misdiagnosed .

    

TRAUBLE said...
Well, they took my entire colon but left the "cuff" because she didn't want to cause incontinance.  I got cuffitis from it and they put me on cipro which I take twice a day.  I think that's what's kept the fistula manageable until now and why I didn't realize this was a CR issue and not a gynecological issue. 

Trauble - if you do have cuffitis then you might want to try a different medication. It's usually pouchitis that is treated with Cipro (or Flagyl or Xifaxin). Cuffitis is treated with mesalamine suppositories / Canasa or protofoam and then azulfidine for maintenance.

If the cipro is helping the fistula then you should keep taking it at the lowest dose that helps you stay manageable. And you should also introduce probiotics to keep things healthy. Just try to space the dosing of the antibiotics and probiotics so they don't cancel each other out. (I.e., take the probiotic in the middle of the doses of antibiotics.) 

Trauble - if you do have cuffitis then you might want to try a different medication. It's usually pouchitis that is treated with Cipro (or Flagyl or Xifaxin). Cuffitis is treated with mesalamine suppositories / Canasa or protofoam and then azulfidine for maintenance.



If the cipro is helping the fistula then you should keep taking it at the lowest dose that helps you stay manageable. And you should also introduce probiotics to keep things healthy. Just try to space the dosing of the antibiotics and probiotics so they don't cancel each other out. (I.e., take the probiotic in the middle of the doses of antibiotics.)

Hi Sunnycali - I am on pribiotics - have been for some time and do space them out. Nutritionist put me on those right away. I can't take Flagyl - terribly allergic - same with Xifaxin. I've taken Canasa and didn't get much resolution with it. It is cuffitis not pouchitis - she tested me. It's because I can't take many of the drugs that most collectomy patients can take that they put me on cipro - and for the most part it helped maintain it but the fistula has tunnelled deeper now . . . waiting for an authorization to get back in to see my CR specialist - thank you for your thoughts.

I wish there was something to get rid of it once and for all . . .