Blood, urgency, pressure and leakage

Have you ever tried any of the other pouchitis antibiotics? Have you ever discussed the cuffitis possibility with your doctor?

Thanks, Scott, I can always depend on you for an answer. The doctor didn't see any when I had my scope, but I had been on cipro for a few days and it usually clears up quickly. I've tried Amoxicillin with poor results. I guess I will have to email him on Monday because it's just not going away and I have some very heavy bleeding and diarrhea....I expect to be up most of the night since taking lomotil does nothing for me...UGH! 

I have been using a tooth whitener and because when you put it on you have to swallow it because there's nothing else to do with it. Do you think that may be causing the problem??? 

Wow, I don’t know if the tooth whitener is a real possibility, but it’s easy enough to check. Just pause the tooth whitening. Your teeth will wait patiently for you to resume the treatment.

Bleeding usually isn’t a prominent symptom of pouchitis, but sometimes one of the ulcers erodes a small blood vessel, with exciting results.

This “off Cipro for a few days” cycle you’ve been following seems strange to me. It’s not likely to reduce your risk of side effects very much, if at all, and it seems almost designed to develop Cipro-resistant bacteria, making the Cipro less effective. I think if you need antibiotics to stay well then you need antibiotics to stay well. It’s worth keeping the dose as low as you can, but frequent interruptions may not do any good. Normally a rotating sequence of antibiotics is best, if you can find two or three that do the job. It sounds like you may have skipped that step (trying Flagyl, rifaximin, Tindamax, etc.). In any case this might be a good time to try Flagyl, either alone (my preference) or in addition to the Cipro.

Cuffitis as a guess is kind of a stab in the dark. It’s possible, but I think I’m hearing that the only reason to consider it is the bleeding. Have I got that right? If so, then out-of-control pouchitis seems more likely.

Thanks again, Scott!! I am going to stay off of the tooth whitener for sure! The reason I think that it's cuffitis is because it feels like I have a pole stuck up my rear end....lots of pressure and soreness, quite sore as a matter of fact. Would cuffitis cause that pain?

Cuffitis can hurt like heck, and it is a possibility. OTOH you know that your formerly effective pouchitis treatment isn’t working now. An additional disease is always a possibility worth considering, but a change in a known disease/treatment happens more often.

Do you know how cuffitis hurts??? Is it like what I'm describing??? What is the usual treatment for it.....I've told him that I think it's cuffitis and he has me on an oral medication, is there a topical one. What would be the additional disease that I could have. Lots of questions here and my doc can't answer a lot of then. Considering going to see Dr. Shen.

By “an additional disease” I just meant cuffitis, which you’re speculating about. I apologize for any confusion. The easiest “topical” (really rectal) treatment For cuffitis is Canasa suppositories. They are expensive, and I believe mesalamine enemas are less expensive (but perhaps more of a nuisance).

I’d really suggest getting your pouchitis under better control first - that will help clarify if something else (like cuffitis) is actually going on, and enable you to tell if any treatment is working. It’s easy to get trapped into spending many months thrashing unsuccessfully unless the approach to diagnosis and treatment is methodical.

Thanks again, Scott, I have Canasa suppositories and they hurt too much to put in and they really didn't help much when I used them before. At this point, I really don't know what to do. I don't have another GI doctor to go to but I'm going to email him tomorrow to tell him about the problems that I've been having and hopefully he'll tell me what to do. I don't think that it's pouchitis, there's too much blood and I'm feeling too uncomfortable.

Thanks for all of your help!