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Need Some Insight

J JacobMember

HI All,

I just wanted to start out by saying I've been following this group since I had my first surgery performed in June of last year. You guys have been such a helpful source of information along the way but I haven't felt the need to actually post until now. I had my takedown and everything connected in October of 2017. The first few months were filled with the usual issues-burning, pressure, etc. Eventually everything settled down but I always had horrible trouble emptying my pouch.

Naturally I thought the terrible troubles emptying were due to pouchitis/cuffitis or a stricture-the usual culprits. I had a scope performed and there was no evidence of any of the above. My Surgeon put me on a course of antibiotics still just to see if anything improved. 

The same day I started the antibiotics was the best day I've felt since before my Ulcerative Colitis. The next two weeks were heaven.  Everything passed with ease, I was only going 2-3 times a day, and life couldn't be better. I could eat and drink whatever I pleased. I almost wanted to cry thats how good I felt. Then two weeks later when the prescription was up I returned back to my original state. Since everything showed up clear my surgeon wanted to put me under and take a closer look at everything. The more detailed scope showed once again no pouchitis, cuffitis, etc. They even took a biopsy and that came back completely normal. They did however find a small kink (just the way my pouch healed apparently) that they said would be harmless if it wasn't causing me discomfort

My question is-could this kink be the cause of all my issues? If it is I don't see how antibiotics play such a huge role in making me feel better. I started a second course of Cipro after begging for more and once again I've returned to feeling amazing. I just know its going to be short lived unless I get down to the root of the issue. At this point if we can't find whats wrong I will happily go on long term antibiotics knowing the risks. Just wondering if anyone has dealt with anything similar or could give me some advice.

Thank You! 

Last edited by Jacob
Original Post
Scott FScott FMember

I would have suspected the kink as a good candidate for the culprit except for the antibiotic effectiveness. I can’t think of a way for Cipro to fix a structural problem, except the remote possibility that it thickens your stool which somehow splints the kink so it doesn’t collapse during defecation. That theory might be testable with soluble fiber - if you can get a similar effect with psyllium as you get with Cipro you will have found something important. OTOH, perhaps you already take soluble fiber and know the answer. In any case, if your stool consistency is significantly different when you’re on Cipro, that might be an important clue (and possible mechanism), and it might be achievable without Cipro.

The mechanism by which Cipro helps pouchitis isn’t really understood. There are thousands of different bacterial species in the gut, each one of which has a different level of sensitivity (or insensitivity) to Cipro. The notion of “good bacteria” and “bad bacteria” doesn’t really make much sense for most of these species.

Ideally you’ll get an explanation for the problem. Perhaps a defecogram would show an anatomical issue. Perhaps anal manometry would reveal that your sphincter isn’t relaxing properly. I know I’d pursue a proper diagnosis, but it may require patience, and possibly a hunt for the smartest doctor in town. In the meantime, you might discuss with your doctor the reality that so far only Cipro has made things work properly. You may want to stay on it for a while. I’d strongly recommend finding the lowest dose that does the trick, by *gradually* reducing the dose until it stops working, and then bumping it back up a notch. For me, at least, Cipro works just as well taken once per day as twice daily, which makes it easier to manage. I only know that because I carefully tried it.

Good luck!

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