Is this pouchitis?

Whether or not it gets called pouchitis, it sure sounds like you're better off staying on the antibiotics. If you can find two or three antibiotics that work for you it could be helpful to rotate then every couple of weeks. I've been on antibiotics for about 4-5 years now, and they work just fine for me (I haven't found effective choices to rotate). CT Barrister is our resident antibiotic marathoner, having been on a rotating course since the Eisenhower administration. 

Thanks Scott, 

Yeah, starting a two week combination of metronidazole and ciproflaxin always usually clears things up very quicky, but it is such a high dose and over such a long period I've desperately been trying to find other ways of keeping the pouchitis at bay. But the symptoms slowly creep back as I stop the dosage.

 

I am (or was) a bit reluctant to go on anti biotics long term, but I guess it's probably better to be on anti biotics than have pouchitis symptoms. I will get in touch with my specialist about a rotation or long term dose. Also - Saying that my symptoms don't cause me too much bother has come back to haunt me this evening, I'm not having the best of nights! 

 

Hi,

 

I have actually rotated antibiotics since 1995, so about 20 years.  During that time I have taken antibiotics continuously because I deteriorate severely when I am off them for more than 7 days.  Other than the multiple failed attempts to go off antibiotics,  I have been on them continuously for 20 years now. I rotate cipro and flagyl, then augmentin and then xifaxin.  I have tried other antibiotics which worked, but those 4 have been the best.

 

The only issues I have had in 20 years of continuous antibiotics usage are occasionally bad breakouts of yeast infection/warts, although I learned to curtail the yeast infections by rotating (xifaxin is not systemically absorbed and enables skin bacteria to repopulate while you are on it- this is critical) and copious drying of the areas where I am prone to yeast infections, namely my armpits and legpits. Other than that, I have not had any real issues.

 

Back in 1998 or so I asked my then GI about the possibility of long term antibiotics and possible effects.  He said to me, "you are the Guinea Pig."  So the Guinea Pig is still doing well.

I think this pouchitis for sure. May I ask, does it affect your ability to work?

When pouchitis is properly controlled by antibiotics your bowel function is likely to be "pouch-normal" (or a little better - antibiotics tend to thicken things up). I experience no disability whatsoever. The antibiotics are well tolerated by most, but have the usual common side effects (e.g. some women will develop yeast infections), and some folks don't tolerate certain antibiotics. Most pouchitis clears up with a 10-14 day treatment, but for some of us it's a permanent thing that needs to be treated.

 

When it's not well controlled (e.g. if I'm trying a new antibiotic that isn't working) I need more frequent, sometimes urgent access to a bathroom. Whether this is an occupational disability probably depends on the occupation. To give an example, under those circumstances I can still teach a martial arts class, but I might have to duck out in the middle of class or have a small leak. I don't put up with that for very long, but I'm sure if treatment is excessively delayed it can get much worse and cause all sorts of problems in your life, including your job.

Hello O'Gorman, not sure if this was aimed for me or not. I have good days and bad ones, but I wouldn't say it would ever stop me from being able to do work. It would only effect my performance through a lack of sleep, or i'd be distracted if I was in discomfort from trapped wind etc and would need to get to the toilet to relieve the discomfort.

 

And I agree with you Scott that maybe the anti biotics make the pouch function a little better than what would be 'normal' function, which make it a little bit more difficult for me to gauge exactly what normal function is for myself. Especially as I'm only a year out of my takedown and I've been on and off the medication.