I was taking ciprofloxacin for about a year, started to get pain in both ankles, my gastro told me to stop taking it immediately. I’m also allgeric to flagyl and now Cipro. 

I try to regulate with diet, immodium, pepto & Vicodin..unfortunately after 37yrs without a colon not too many meds work that well. 

Good luck to you 

Linda, I’m a bit surprised about your gastroenterologist’s casual response to this. It sounds like you may have developed tendinitis as a Cipro side effect. In some cases this can lead to tendon rupture, which is a big deal when it’s the Achilles’ tendon (in the ankle). Lots of things can cause ankle pain and tendinitis, but the fact that it worsened when your dose was increased is a pretty clear indication. I think you (and your doctor) should be looking for alternatives to Cipro.

The closest cousin to Cipro is Levaquin, but that wouldn’t be a good choice for you, since it has the same side effects as Cipro. Other things to try include Xifaxan, Tindamax, Augmentin, or even switching to a biologic medication. Adding a potent probiotic, like VSL #3, might help a bit, and some folks get significant benefit from a very low carbohydrate diet.

I take Cipro every day, but if it were threatening my ankles I’d try like heck to move on from it. If a serious and creative effort to find an alternative were unsuccessful I might then stay on Cipro, because uncontrolled pouchitis is awful, but I’d cut the dose as low as possible, and use every other trick I could dig up to keep things under control. I already do this in some sense, taking a very high dose of VSL #3 daily.

Thanks!  I am on VSL # 3 but the cost and my limited income prohibits me from taking more than 1 pouch per day....sigh.  I will talk to my Doctor as my Gastro Doctor recently closed my file saying I was stable and my GP can refer me back if need be.  She also said my GP could order my MRCP/MRI for my Liver Specialist annually.  

I have gone back to the lower dosage for now until I see my GP.  Still have ankle pain but not as bad.  I will suggest some of the meds to my GP Scott....thanks again.

Linda, I’m sorry to say that your gastroenterologist has served you poorly. Is there a better informed one that your PCP can refer you to? Your condition is not stable, since you are experiencing potentially dangerous side effects from your treatment.

Do the VSL discounts (on their web site) work in Canada?

I was able to get off antibiotics and achieve pouchitis remission with Remicade and azathioprine (Imuran). 2+ years now without antibiotics.

Jan

Scott F posted:

Linda, I’m sorry to say that your gastroenterologist has served you poorly. Is there a better informed one that your PCP can refer you to? Your condition is not stable, since you are experiencing potentially dangerous side effects from your treatment.

Do the VSL discounts (on their web site) work in Canada?

Thanks Scott. I see my GP next week and I may ask to be referred to another Gastro Doctors.  Also didn’t know there may be VSL #3 discounts!  Will check to see if available in Canada.... thanks again! 

Jan Dollar posted:

I was able to get off antibiotics and achieve pouchitis remission with Remicade and azathioprine (Imuran). 2+ years now without antibiotics.

Jan

Hi Jan.  Nice to connect with you again!  Glad to hear things are stable for you.  Unfortunately I can’t tolerate Imuran or remicade....sigh.  Hopefully I can tolerat a different antibiotic.  There is one that helps PSC but they will only prescribe if very last option.  Sigh again.  I am going to my GP and I may request a different Gastro Doctor.  

Hi Scott and Jan

I saw my GP today and he took me off Cipro and put me on Cephalex so hopefully it works and doesn’t give me side effects!  Thanks for your help!  I do a follow up visit with GP in 2 weeks to see how things are going.  

I hope it works for you! Please let us know if it does - I haven’t previously heard of that antibiotic being used for pouchitis.

So I have been on cephalex one month and doing really well.  We increased it to 500 mg dose and last of symptoms gone!  Yay!  Of course I am on a gluten and sugar free diet and taking VSL #3 once per day as can’t afford to take more.  Get this though....the other day my GP Office phoned and said that they heard from my Gastro Doc and she wants me to go off of the  cephalex and onto VSL #3.  I told the Receptionist I am already on VSL#3 and the Gastro Doc knows that....so I said that they called already and booked an appointment for January so I will keep taking the Cephalex until then otherwise I get to be in Emergency for Christmas because she hasn’t ordered a replacement drug to try!!???  I am feeling frustrated to say the least!  If there is a reason I shouldn’t be taking this med then tell me why and offer an alternative!!! 

It seems that cephalex only works so long...sigh.  Went back to Gastro and she said she would do a Special Authority for a med that targets the bowel only.  I forgot the name and I’m sure it was mentioned on this site.  Does anyone on here know the name and if it works?  

Probably Xifaxan (rifaximin). It works very well for some folks, but didn’t do anything for me.

Thanks Scott

Yep it’s Xifaxin, which has worked well for me. Bottom line is you can’t stay on any one antibiotic and ideally should rotate 3 or 4 of different antibiotic families that you tolerate. For example you don’t rotate from cipro to levacquin as they are both in the fluoroquilone antibiotic family.

My current rotation is Cipro, Flagyl, Tinidizole and Augmentin. Xifaxin is out only because there are insurance coverage issues with it and I only get a very limited supply per year. It’s a bit more costly on retail than the other antibiotics.

Thanks 🙏 

I had some pouchitis (no pain with it) which increased over the years to severe. Last year I started using toilet paper plugs and right then the pouchitis disappeared completely for a year, is now still low. Years ago I heard that white food (like white flour) increases inflammation and dismissed that. But lately I have had indication that it might be affecting me, so I am on strictly whole food now for awhile to see. I take no medication.