Scope/Pouchitis

Feeling good does not mean you do not have pouchitis. It may be in a "simmering" state. Mine has been kept in that condition taking Cipro for 17 years. If there is inflammation there, they will see it.........I would suggest taking the Cipro and not torturing yourself.

Thank you. I agree. I am going to keep taking it. I just can't live without it. I will tell him when he does the scope that I have been on it. And how sick I am when I go off. I feel like I am dying when I go off it. And today I totally exhausted and drained. Thanks again.

I am sorry you are not feeling well. As a chronic pouchitis sufferer (on antibiotics for a year) I can tell you that both my GI and surgeon have told me everyone has some inflammation in their pouch. Prior to my scope I went off the antibiotics for two weeks and although I still had some inflammation, my GI thought my pouch looked pretty good...good enough to suggest I stay off them. I try from time to time, but after a week, I feel pretty lousy also. Sometimes I miss doses and I seem to manage ok, but by and large, I think I may be on them indefinitely as DJB has been.

I agree with DJB to take the meds if they help. It is likely, they will still see some inflammation in the pouch even with the meds. I think after the scope if you try to go off your meds, your body will tell you if you are able to or not. Sometimes it takes some people longer than others and then there are some of us who become chronically dependent on the antibiotics for optimal pouch function. If that becomes the case you will need to discuss the best meds for maintenance with the least die effects. I have been on augmentin for a year with very little side effects. Good luck.

amount of inflamation often not the issue..that is some people do not show inflamation and still have pouchitis symtoms very badly and must be on antibiotics all the time..i am one of them..hanging in so far on augmentin 6 months..longest i have been on only one!
and others have some inflamation and no symptoms at all..its all really how you feel in most instances...if you find you ca not go off them as some of us do than you should remain on them..our bodies sometimes know better than the doctors because they really do not understand what is really happening to us all the time..they just try various things..if you can manage without them then your doc will prefer that of course..its really trial and error so much of the time..

rebe

scopes and tests show nothing wrong with my pouch. I can't be off antibiotics

Thanks so much for all the replies. I had the scope done and he said things looked great but still took his samples and he wants me to restart the canasa. I hate those things!!!! They make my morning terrible. He is keeping me on cipro and gave me an extra prescription. I go back in two weeks so I will know more. The pictures I got from the scope looked fine. So I don't know. I feel better knowing that everything can look fine but still have pouchitis. I sure love this site. When things are going bad at least I know I have others to turn to