Has anyone done okay being on cipro for the long haul? I just visited my surgeon again for about the 4th time this year. Basically I begin to have cramping, spasms whenever I am off cipro. It seems everytime he looks into my pouch it seems fine (no inflammation). He has not actually sedated me to scope very far up (he says that is the next step if I don't start feeling better). Right now he has me on a daily dose of 500mg of cipro. He also recommended chewing rolaids like they were candy and also taking VSL3 daily also trying cholestrymine (Sp). So anyway the main question here is cipro safe to take daily for the rest of your life? And also has anyone had a positive outcome using the cholestrymine?

Hi Tracy
I,m on long term cipro myself,I use from 500 to 1000 mg a day,as for the rolaids I was under the impression they can effect the intake of the cipro,something about the calcium I think, I,m not sure on it.I feel no side effects at all from my cipro and have been taking it for over a year now.I do eat a very well balanced diet and try to keep my pouch from being stressed if I can,what I do know is that this is what works for me and I run with it and feel great for the most part,when I,m not doin so good I turn into a couch potatoe and enjoy every minute of it.
hope everything works out
matt

It is safe to take as long as you do not develop adverse side effects. If and when that time comes, that is when you deal with either stopping, reducing the dose, or switching to something else.

In the meantime, go with what works.

Jan

I've been on Cipro for nearly 2 years now, 250 mg twice daily. I don't get side effects (though now not sure if pain in shoulder,upper arm, finger and occasionally left foot is osteoarthritis or the limb pain that I've read about here!). I don't generally have constant pouch pain or fevers but I sure have frequency, sometimes gas and occasional pain when I eat too much carb at any one meal.

I've been taking Cipro 500 x 2 daily for 5 years and the only side effect is I hate my pouch. Cholestrymine didn't help me at all.

i was on cipro for most of two years. I stopped taking it when i started to have neurological symptoms and psychiatric ones (namely my already existing anxiety and ADD became overwhelming). It helped a lot though when i was on it though and i am thinking about trying it again in may after i'm done with school(levaquin is really expensive).
My past complaints... http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/6631...631064742#6631064742

-sara

I was on cipro for about 5 months and stopped it due to issues with joints. I started having lots of elbow pain for no good reason. Though I can't prove cipro had anything to do with it, my doc said it's possible, plus there are sites on the 'net say joint pain can be a side effect.

I am doing well pouchitis wise, and am keeping it in check so far taking a combination of Culturelle, Dan Active, Forvia chewables, and Pepto Bismal tablets strategically through the day and week.

i have been on cipro for 7 years and havnt had any problems. befor i started taking it i had pouchitis all the time now i havent had it in 7 years.

Thanks everyone for your replies... Cipro and VSL 3 seem to be helping for the most part.. still have some blood and cramping, but not near as bad... I was just wondering for all of you who have taken cipro long term... anyone gain weight? Since I started on the cipro and vsl 3 I went up an entire pant size!!

I took cipro for a year and a half (500 mg twice a day) and by the end of that period I had developed really bad lower back pain. It would only occur at night, around 3 AM and then ache so badly I couldn't sleep. Once I got up I would be stiff for 15 minutes and then be fine.

Once I stopped taking the Cipro the pain resolved in about a week.

Unfortunately Cipro is the only thing I've found that helps me at all...

How about Flagyl? Anyone taken that long term? I recently had a bout that flagyl worked for but cupro didnt. My GI suggested that long term use can lead to some neuropathy - tingling in hands feet etc...

I originally tried flagyll.. it did not work at all for me... I'm not so sure this cipro is working at all that great either.. from the looks of it everyone reacts differently...

I have had chronic problems (pouchitis and cuffitis) for over 6 years now with treatment in Canada, France, Hong Kong and now Australia (I have moved around a bit).

I have literally had different advice by specialists in all four countries which I find fascinating.

1) I did best in Hong Kong. There are some studies that indicate that *some* people's UC and pouchitis will go into remission if you are located close to the equator (ie. tropics). Mine certainly did. No pouchitis while there.

2) I do disastrously in cold climates. Cannot explain why.

3) Australia has been better than Canada but not as good as Hong Kong. BUT amazing medical support here. THE VERY FIRST thing my specialist warned me about was the danger of damaging my kidney and liver with long-term use of cipro!!!!!!!!!!!!!!!!!!!

Has no one else had this advice? I tend to use cipro (250 mg once or twice a day) every 3 to 4 days, along with taking a chortizone (sp) suppository every night. A balanced diet with reduced fibre, vitalye, heaps of water, and proper sleep in combination with the above drugs have made a *night and day* difference for me. Anyhow, FYI on the cipro... alanaM

hi..i have chronic pouchitis and cuffitis (after a year and a half of trying to figure it out with different doctors..anyway cipro,levaquin or anything i took would only work for awhile,then i was put on two antibiotics..levaquin and tindermax and it really relieved the constant soreness/irritation or burning..in almost two years i finally did not have pain..but i have now gone to cleveland clinic where they confirmed my situation and put me on a suppository i take for cuffitis..that appears to be working and i think the real problem is the pouchitis..dr. bo shen seems to think he can control it thur meds and only have antibiotics for a rainy day as he said..but i am taking tincture of opium(he gave me)and something called lactolose and wants me to take those anfter 7 days stop antibiotics..so i am hoping for the best ..

because i have been on the double antibiotics for about four months and beginning to wonderas others if my strange stiffness in my toes for one thing is not just old age but related to the double antibiotics..i work out in the gym soi usually contribute things like that to workouts,bad shoes..but now beginning to wonder..

rebecca

but i do believe it is an individual thing..personally i would be okay on the antibiotics to keep me pouchitis free but concerned i am having side effects..

tracy i forgot to add that if you are having blood i usually found that to be related to the cuffitis so see about getting some antiinflamation suppositories and see if the cuffitis/pouchitis is better..my experience so far is until i got on the two antibiotics i still has some symtoms..since antibiotics are for the pouchirtis generally i presume the cuffitis is being taken care of with the generally harmless suppositories..

dr. bo shen di say i should be on suppositories for life as precaustion for preventing cancer of the cuff since i have some cuffitis..look into the suppositories and try to change the cipro to levaquin or just add the suppositories see if blood goes away..if not try changing to another antibiotic like levaquin plus the suppositories..if that doent work then maybe like me you need two antibiotics..sometimes the two together cn knock the pouchitis out better than the one i have learned..my original surgeon said no way two antibiotics better than one but he was definitely wrong!!only on the two did i finally get relief from all pain,soreness/burning which did not have to do with a food..

hope this gives you some food for thought..it really is a try an see thing because everyone reacts differently..we just have to hope and find what works for each of us..right now i am putting my faith in dr.bo shen in cleveland clinic..i communicate with him by e-mail after traveling to cleveland from cal. where i live to see him..rebecca