I have struggled with Chronic Pouchitis since having the J Pouch surgery 10 years ago.  I take Visbiome twice a day, and Pepto Bismol 2 tablets twice a day.  I use  Cipro (as I found Xifaxan mostly ineffective), but only when symptoms really get out of control.  When I'm on Cipro, I feel great.  I would stay on it permanently, but I'm scared to death that I would develop a tolerance to it and it would eventually stop working.  I also was told that long term use of Cipro could cause spontaneous tendon rupture.  Am I being crazy, should I just take the Cipro permanently and actually feel good?  My ultimate fear is pouch failure and having to revert to an ileostomy.  

Original Post

Why are you taking Pepto? I have heard many people here and my doctor not being worried about long term use, but I get your concerns.

I’ve been on Cipro continuously for about 11 years. I’m not aware of having any side effects from it. My gut works well, and my activity is unrestricted.

Yes, Cipro does sometimes cause significant side effects. So does crossing the street. I think you ought to live the best life that you can.

PouchLogic posted:

Why are you taking Pepto? I have heard many people here and my doctor not being worried about long term use, but I get your concerns.

I take Pepto to help with pouchitis, it has an antimicrobial effect. It definitely works to some degree. If I even miss one dose I start to become quite sick and bowel movements/ urgency increase. So it is definitely doing something. 

Scott F posted:

I’ve been on Cipro continuously for about 11 years. I’m not aware of having any side effects from it. My gut works well, and my activity is unrestricted.

Yes, Cipro does sometimes cause significant side effects. So does crossing the street. I think you ought to live the best life that you can.

Thank you Scott, I think I just needed to hear it said by someone. My pouchitis is starting to limit my life and I just want live my life and be healthy. I was getting depressed just thinking about if this is what it’s like now, how bad will I be in 10 or 20 years. 

I have been on continuous rotating antibiotics for 24 years.  I added Remicade in the last 4 years and reduced my antibiotic dosages by over 50%.  The key is to not stay on any one antibiotic and rotate them every 2 weeks or so.  I currently rotate cipro, flagyl, tinidizole and augmentin.  Xifaxin is another good one if your insurance will cover it, as it is not systemically absorbed.

This post is very timely since I was wondering the same thing....I just started back on Cipro yesterday for pouchitis and cuffitis. My doc says I should stay on it for a few months to see if I can get stuff under control. I wonder the same thing. He said there are worse things than a very low dose of Cipro to keep things at bay. I’m sure there are and for now it seems to help so I’m gonna to just go with it. 

If you’ve been on for 11 years- that seems like a lonnngggg time- it at what point do you talk about a Ileostomy? Are you having side effects from the antibiotics? As a woman, I’m not looking forward to the potential chronic yeast infection that I’ll be getting for the next two months from being on the antibiotics. Again, that’s nothing compared to the symptoms I had when my UC was the worst so I guess it’s all relative. But, at what point do you have that conversation? That scares me. I don’t think I’m close to that conversation but I do wonder at what point that will happen. 

About the side effects with the ruptured tendons- I actually have pulled my Achilles’ tendon before so it does make me nervous about pulling it again with being on this medicine. Go figure. Ugh, if it’s not one thing it’s another. 

Since I have great disease control and no side effects, why on earth would I discuss an ileostomy? I am much, much healthier than before my surgery, in spite of the long-term antibiotic use. Pouch failure is when all reasonable treatments have been exhausted.

I’m not prone to yeast infections, but you could potentially manage those with something like miconazole (Monistat) instead of planning to suffer. It’s possible that a strong bacterial probiotic, like Visbiome, might help reduce that side effect. I do take a high dose of VSL #3, well separated from my antibiotic doses, mainly to provide additional support for pouchitis control.

I was just asking a question - if you were having side effects of being on the medication and such. That’s why I asked the question, is all. I didn’t mean to offend you. Sheesh. I feel like that was a stupid question at this point. 

I have just read that for some people they have chosen to go back to an Ileostomy bc they have bad symptoms. Just wondering. Sorry. 

As a man I had problems with yeast infections (where sun doesn’t shine, legpits mostly) but these were resolved by rotating onto another antibiotic as I already posted earlier. Xifaxin isn’t systemically absorbed and stays in the GI tract so it’s not going to cause yeast infections in males or females and will give your body a break from systemically absorbed antibiotics. It should be in the rotation if your insurance will cover it. Anyway I have been on antibiotics for 24 years, continuously, although now at much lower dosages than in the past due to Remicade. I got the yeast infections when I was taking 1000 mg of cipro and 1000 mg of flagyl, for months. Now I am taking like 250 mg per day.

Talk about an ileostomy is premature when no treatment has been attempted. You really don’t want to go down that road in my opinion unless you absolutely have to. My mindset has always been to keep my J Pouch as long as possible and I have had it for 27 years now, while successfully treating pouchitis almost that entire time.

Last edited by CTBarrister

I wasn’t offended, just surprised. If you’re having unacceptable side effects from a medication you try a different one. It’s possible to run out of options, but there really are a fair number of options. You went through so much to get a J-pouch. IMO it’s worth some effort to make it work, if that’s what it takes.

I haven't been on this site for awhile.  Doing well and living life! 

I have been rotating antibiotics for  8 years (few months after I got my j-pouch).  I had issues early on with yeast infections and a general itchiness and always needed probiotics.  But I think my body just learned to adjust to the antibiotics, and I no longer have that side effect nor need probiotics.  Cipro doesn't work great for me anymore since I was on it for 6  straight months for pouchitis prescribed by my surgeon who didn't seem to understand the importance of rotating.  I was then on Augmentin low dose for 15 months (pregnancy and nursing) since it was the best and really only good option during that time.  So, Augmentin doesn't work well for me anymore either.  I also was on Pepto for about a year, which worked great, but also, no longer effective.  Now, I'm very good about rotating.  I rotate through Flagyl, Xifaxan, and Alinia.  I will throw in Cipro and Augmentin in once in awhile, but they aren't as effective.  

Additionally, I take a very LOW DOSE of antibiotics.  I'm sure all of them would still work and work well if I upped my dose.  I just take one tablet at bedtime, which does the trick.

Also, I have to be careful with Flagyl.  I have had issues with tingling fingers and toes, which I assume was neuropathy.  It's happened multiple times and stops within a day of me getting off the Flagyl.  But, it works the best for me still of all the antibiotics so I generally give it several months break and go back to it again and see how I do.

I have had a jpouch since 2007 and a constant battle with pouchitis! Cipro has done major damage to me! I have had tendons blown in both biceps, in both shoulders, also both rotary cuff blown at same time, one total reverse shoulder replacement! I tried it again about 2 months ago after 10 plus years off and after 5 or six days my hip joints were inflamed so bad I could barely walk! After a week off I returned to normal! Flagyl would make my hands freeze up after being on it for awhile! I am now on Remicade after doing Stelara and Entivyo! Going from one infection { Sibo} after another and getting gun shy of antibiotics! So very tired of this constant war but as we all know { it doesn't matter how tired you are of it!} I was diagnosed with UC and when I got horribly sick the last time, I told them to take my colon out! They said that was the cure so I was excited that the hell would end! Then pouchitis hit and they said " Oppps!!!! You must have Chrohn's!!! I have dealt with this hell for 25 years and still have non stop diarihia! What a joy!

 

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