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S
Hi All,

I have had a dodgy j pouch for 4 years now, and have been through every medication that the docs can throw at me. But they are close to calling time on getting me functioning better.

Their last ditch attempt to save the pouch is a permanent dose (500 twice a day) of cipro. I have had many short courses of cipro before and they have always seemed to be fairly helpful, but I am into the second month of the permanent dose and I am feeling rough. Though the cuff is behaving (I have had lots of issues with this), but the pouch is still not working very well swinging from massive watery acidy output to being constipated.

The permanent cipro worries me. The docs say I should not build up a tolerance to it, but by the second day of the short courses I have had in the past, my function and control have been amazing, but at the moment, other than the behaving cuff, it doesn't seem to be helping. Feeling under the weather is starting to take its toll. I wouldn't say I have any particular symptoms, just sort of fatigued, headachey, and a bit nauseous - just run down I guess.

Is anyone having permanent antibiotics? I would love to hear other peoples experiences. Either I deal with this or loose the j pouch, so any advice at big decision time would be gratefully received.

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CTBarristerCTBarristerMember
I have taken antibiotics for 20 years to combat pouchitis. I rotate antibiotics (cipro, flagyl, xifaxin, augmentin). If you do not rotate there is a chance a resistance will be built up. When I stayed on Cipro for a long period I did end up with a yeast infection but I was taking a higher dosage than what you are taking now.

In my case pouchitis has never been eliminated. Annual scopes show "simmering pouchitis" and scattered ulcerations in the pouch. The antibiotics control the symptoms but do not eliminate the disease. Changing my diet to cut out carbs and sugars has reduced the amount of the inflammation.
CTBarrister
Scott FScott FMember
Lots of us are on antibiotics all the time - we have antibiotic-dependent pouchitis. Some of us rotate/change them every 2-4 weeks, and others use one as long as it works.

I've used Cipro as long as a few years. I found that I could reduce the dose to 500 mg once daily. It did eventually stop working, so I went through a few other antibiotics, none of which worked quite as well. Right now Cipro is working quite well for me in combination with Flagyl.
Scott F
J jeaneMember
Ditto what others have said. I've been on antibiotics for over three years since getting pouch. Currently on augmentin. I try and take least dose possible ( can actually get to where taking 875 mg every third or fourth day now). When off antibiotics completely suffer from burning acidy output and very sore anal canal with some cramping and increase in frequency. Its the bunning anal canal that really gets to me though. To help push through to fourth or fifth day I substitute with a dose of rectal Canasa or anucort.

Sometimes you have to really experiment with what works for you. I was on cipro for over a year and personally feel much better and less fatigued on augmentin. Cipro gave me terrible muscle aches with deadening fatigue. Hope this helps.

Don't ditch your pouch because you need perm antibiotics. Lots of us manage on low dose antibiotics but I do think some of the side effects from certain antibiotics are as bad as pouchitis and cuffitis symptoms.
J
TE MarieTE MarieMember
My 2 cents c.diff scare. Since you've been on it so long this isn't probably pertinent. When I had my colon I got c.diff after taking Cipro so I can't ever take it again. You might want to look up the symptoms and see if they describe the way you feel. The unfortunate thing is you can not be tested for this unless you are off of any kind of antibiotic for at least 14 days.

That said I doubt you have it but you never know. It just seems strange that you are feeling worse.
TE Marie
R Rebe0505Member
i too have been rotating antibiotics for years even had a run in dec of no antibiotics for three months did well but things started to deteriorate thereafter..up and down days..made me pretty crazy..i had started my low carb diet at time which i till maintain because i think it lowers my amount of antibiotics i need....never could stay on any antibiotic for so long a period always built resistance..most people do..

as far as cdiff test..i never had to be off antibiotics to take test..
R
S SpogiMember
Thanks to all of you that have replied. It is always good to know that there are others out there battling with similar problems, and by the sounds of it, winning.

I will keep on going with the cipro for at least as long as I can, who knows, I may find a way to adjust the dose and with some dietary changes, keep on going forever.

I have one year left of a temporary contract which allows me to work from home. Though once that is over, I will have to get myself well enough to tackle the prospect of an hours commute and a full time on site job. At least for now I have the luxury of income while I can try to make this work. Out of interest, do you all manage to have a normal working life?
S
CTBarristerCTBarristerMember
quote:
do you all manage to have a normal working life?


My entire adult professional career life (22 years) has been spent working with a J Pouch and virtually all of that time has been spent rotating antibiotics to treat pouchitis. So the only "normal" I know is this existence. I do not believe things would have been markedly different if I had a healthy colon and no IBD, although I will never know for sure.

I really think the key thing is whether the treatment is working at controlling the symptoms of the disease. This is where there could be great variations between all of us as to the degree of symptom control one is obtaining from the antibiotics, as well as individual tolerance levels of not only the symptoms but the side effects of the medications used to treat the symptoms. I believe that my body may have adjusted to tolerating some level of the symptomology. I also seem to tolerate antibiotics unusually well as far as side effects go, with the worst thing to have happened was some yeast infections. However, I have learned how to prevent them from occurring and it has been a long while since I had any yeast infection of consequence.
CTBarrister
Last edited by CTBarrister

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