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Cipro HAPPILY change my life!! Long-Term use??

TheresaSTheresaSMember
Let me get right to the point before my explanation.

Can I be on Cipro forever???? (lol) Heck, even a lower dose than the round I was just on to maintain the beautiful results.

NOOOO, frequency, urgency, NO CREAM, no gas build up, no leaks, N O T H I N G that's been making me crazy daily regretting this surgery 12 years ago. Symptoms above didn't just start one day, or I'd have considered pouchitis, I've had the same symproms making me pissy since the day I had my takeodwn. (unless I've always had it since I got my pouch and no doc has ever bothered to treat it) I've never been told I had it nor was treated for it.

I searched the forms before i posted but it really is easier to have everything in one place for me to reference. I find so many different answers I get confused.

Cipro did an amazing job with my pouch, curing everthing i've been trying to change like the Vicidon did. I had the better quality of life I was lookig for and it really chagned my life in such a good way you have no idea. For a week I was the happiest I've ever been (aside from the week I took the Vicidon and had the same results. I was recently put on a round of cipro for a mild UTI and what an AMAZING difference Cipro made with my pouch. 500mg 2x daily

It seriously gave me such a wonderful quality of life I wanted to cry happy tears. Now I'm off of it and it's back to square one and it's depressing the hell out of me. Even with all the new things I've tried and researching I've done. It sucks I'm over it.

I know there's side effects just like anything else, and as individuals we all experience them differently if even at all. I'd really like some input on this. I've seen how happy many others were during their rounds of Cipro, and there has to be a way to maintain the wonderful outcome it offers.

I also see about rotating antibiotics, can someone give me a quick 101 on this? I like to arm myself with all the possible things that have ever worked for me before the doctor and I make a long term plan for me.

Can you tell how elated I am with the results of Cipro just for 1 week?? Seriouly I can't stress how it changed my life for the better. For the 1st time in 12 years I was happy. I want to maintain this.

Thanks everyone!!
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S SimpleXMember
Hey,

I'm four month's out from takedown. During month two I developed some pouchitis, and went on cipro (500 mg 2/day) and just like you, felt AMAZING.

When I had to go, I didn't even feel pressure, I just felt kinda full in my stomach. My stool was always formed, I never had itching (which is my main burden right now), I could get a consistent 5-6 hours out of each BM and could have easily gone longer.

I easily slept 8-9 hours a night without waking up. I felt wonderful.

Believe me when I tell you, I understand what you're going through. Since I stopped it's back to my normal, liquidy output that isn't necessarily urgent, but it uncomfortable to hold in. I have my itching back, and do not sleep as long through the night without waking up.

While on the cipro what I ate made no difference, I could eat pizza and chipotle and asian food AND ALCOHOL with my friends and be one of the guys.

However, no matter how depressing the fall in quality is, I think it is very unwise to start rotating antibiotics for long term use. The side effects can be very bad (liver damage, immune build up so when you really need the antibiotics they are less effective) and you don't really NEED them at the moment.

Yes, quality of life is less, but going on antibiotics or narcotics indefinitely is not an acceptable solution. Staying on cipro is not because you will soon build up a defense against the antibiotic and it's amazing results will slowly wear off. Long term antibiotic use has been shown to have negative effects to organs and immune system.

Maybe one day a drug that has all the same benefits as Cipro with none of the negatives will be made for us J pouchers... maybe one day...
TheresaSTheresaSMember
I've done some extreme research the last 2 days on my question. I know that anyone here can give me a better idea considering we're all on the same boat. However, I've seen mixed things. And many are the far fetched 1 in 2000 people type side effects you hear at the end of every drug commercial. I see all the bad side effects, but those are also plastered all over the Imodium we take every day and anything else as simple as baby asprin that many take daily. I try not to hold too much to those side effects. The % that have vs haven't are what tells me it's a small factor. Risk/reward is what I'm basically researching on the topic. I want to see the 30 out of 100 results to weigh my options.

I'm just hoping some people here have been on long term and can give me an idea of their experience. I know what we hear and what can happen, but I like to get actual testimonials because heck, if we believed everything we read we'd live in a glass bubble lol.
tammykathleentammykathleenMember
Hi Theresa,

I have been on constant antibiotics for years due to my chronic pouchitis. I would say about 5 years. I have stuck to one if it is working, and always have Cipro and Flagyl on hand if things get out of control.

Back in January I developed 3 fistulas and had setons placed. However, as they were actively draining my doctor also prescribed Cipro and Flagyl, which is the standard course of treatment and not a huge change for me since I have always been on some form of antibiotic.

While it would be great if all of us had to take nothing and live excellent, poo-free lives full of energy, stamina and no pain, that isn't reality. Antibiotics are a very real way to keep pouchitis either at bay or at a level where it isn't interfering with your life constantly.

I wouldn't choose to voluntarily stop taking my Cipro because my quality of life would not be very good without it. I know there are risks with any drug, and that in the future I could face some potentially serious side effcts/cumulative effects. I could also be hit by a bus next week and I will have regretted living life at a sub-par level in terms of my health.

I think it is a personal question but many, many doctors are willing to go the route of antibiotics. There are many people here on these boards who take daily antibiotics. I am one of them.

Good luck with your decision, Theresa!!

~Tammy
TheresaSTheresaSMember
Thank you Tammy!

I take all the other everything else and then some as well. Imodium, pepto, beano, probiotics, metamucil wafers, digestive enzymes, the works. It all does something, but not really enough. Id say my happiness with my pouch was at a 3 out of 10 before all that (only cause I wasnt ill anymore), currently on all that it's about a 5 out of 10 lol. I was still taking all that and the Cipro with the great results.

I plan on talking it over with a doctor, i just like to have all the information before we have the talk.
KarbearKarbearMember
I have been on Cipro for the past year for pouchitis. Unfortunately for me, if I'm not on Cipro I am having a severe pouchitis flare with urgency, pain, fever, and sometimes bleeding. Cipro gives me a good quality of life that I otherwise would not have.

I tried once to switch to Entocort which did great for the pouchitis, but I developed abscesses in my abdomen and had to go back to Cipro.

I think it is great to discuss with your doctor. Maybe try another longer course of Cipro with frequent monitoring. I am assuming in 12 years you have been scoped and fully checked for other functional problems that could be causing your problems.
TheresaSTheresaSMember
Over time I've had everything under the sun and over it checked out. It's just my fucntion and I was told I have to live with it. I remember I told the doctor once "you don't know me too well do you" lol. I dealth with it, tried a bunch of things, came on here and read about everything that may help and tried it all, but now I'm at the point where I don't want to deal with it anymore.

I was almost ready to have a serious talk about opiate therapy considering I had great results with the vidicon and I see it's not all that uncommon. Im quite afraid of that route though for many reasons. I was an addict once, that being the main one. I may not have any self control on a long term use of opiates.
CTBarristerCTBarristerMember
My rotation is cipro and flagyl (taken together), xifaxin, and augmentin in that order. The Xifaxin is not sytemically absorbed and thus gives the system a breather after the cipro/flagyl tandem.

If you do a search there are many threads on this subject (rotation), and there are also other antibiotics that can be used, added or subtracted to the rotation depending on how they work for you.
ArtisanArtisanMember
Thank you for posting this subject. I am going thru the same issues. I was absolutely miserable until the doc gave me cipro. My quality of life has improved greatly and the pain pills I must take just to make it thru the day have cut in half! The bad side effect I am getting is fatigue. I too have been thinking of taking cipro full time. I hope my doc is open to the idea. I will be interested in what others have to post here.
TheresaSTheresaSMember
I really appreciate your input coming from someone who has been on antibiotics for a long-term treatment.

I searched around on here before I posted, but it gets confusing with so many things to read. I got a lot of great information that really helped me. I'm going to poll a few of the doctors I work with before I go talk to my own. See what their feelings are. I'm close with them all and they'll be honest. I'm one of those people who likes to gather as much data as possible before I make a jump.


I guess, just like everything else, you take it and see what happens, keep an eye on things get the proper tests if needed, and pray lol.

After 12 years the rewards outweigh the risks (the common risks, not the possible ones) buy a large margin.

I thank you all so much for jumping in.
C chiromancerMember
I am not going to comment on the antibiotics as they did very little for me. Frankly, I think if opiates work for you they can be safer then antibiotics. I would not, long term, use vicodin or any opiate with Tylenol as it can damage your liver. I had (went to an end ileostomy about 4 weeks ago) good luck with tincture of opium. It was really the only thing I found that I could take and have an evening out without problems occurring. Search this site there are several threads about using it.
TheresaSTheresaSMember
It's funny you mention opaties, because that's the first thing I took when I noticed how well I did for a week after I got my tooth pulled, I even looked on here and posted about how it all works and who does it. I read all about tincture of opium and a few others people seem to be super happy with.

All the years of surgery, sickenss, and pain pills and IV pain drugs caused me to become a opiate addict at one time. I didn't understand and I ended up becomming a drug seeker and street buyer for years long after all my surgery was over before I got a grip. It was a sad dark place to end up and coming off that ride was like nothing I've ever experienced.

Because I was an addict at one time and sadly, constant use of opiates will not work for me. The self control issue may never be cured when it comes to them. I only know how to stay away from them, not use them in modareation I'm afraid. I got over my addiction many years ago but it always lies within you no matter how long ago you had a problem. It has it's peeks and valleys through your life forever.

I do agree, they worked wonderful. With me being an accidt once and also being a spinal surgery nurse and the director of orthopedic and spine, I feel opaties just aren't going to work for my life for those two reasons. I'm afraid to open that door again with them.
E elooneyMember
What all of you are talking about with Cipro, my husband experiences as well. He feels "normal" while on it, and it is so tempting to just continually take it, even though we fear the long-term affects of it. What I can't stop wondering is: Why aren't there doctors out there that primarily study the microbiology of human guts? Because that's what it boils down to, right? Cipro is killing the bad bacteria (the good bacteria as well, unfortunately)that causes all the problems associated with pouchitis. So, it seems really simple. If it's simply BACTERIA that accumulate and can't get out of the pouch and are subsequently causing this awful problems, it seems like there should be a better, more holistic solution. I'm just shocked that there aren't answers besides your typical Western-modern medicine. There has to be a more healthy solution....we're still searching.
KarbearKarbearMember
I have been very fortunate to be able to stay up to date with the leading research being done with IBD. There are many doctors who are primarily studying the bacteria in our guts. The unfortunate part is there are more types of bacteria in our guts than species on the Earth, many of which do not survive outside of the gut to study. Take hope that there are doctors out there working hard to figure this out.
vanessavyvanessavyMember
You have to rotate them usually every 7-14 days. Cipro and Flagly are dangerous drugs to be on for long term. It isn't just side effects on the end of a commercial that I am talking about. For long term use you should go on Xifaxin that delivers the antibiotic straight to the bowel. I personally use Omnicef for my issues, the one that works the longest and best for me. I use cipro when nothing is called in yet but it only works for 3-5 days then I rotate off of it.
vanessavyvanessavyMember
quote:
Why aren't there doctors out there that primarily study the microbiology of human guts?


Dr Bo Shen at Cleveland Clinic is the man for all of this. He is onto cutting edge medicine at the Pouch Clinic there. Reason I am going to see him since I technically don't have pouchitis but I get an overgrowth of bacteria that forms and makes my life hell if I am not on an antibiotic. I am over taking them long term since these things can cause more damage than good. I hope to learn a lot about this all next month when I meet him. Everyone swears by him.
Scott FScott FMember
I've been on Cipro continuously for about 18 months. The lowest dose that works for me is 500 mg once/day. The results are entirely good - no discernible side effects, no problems. I'd take fanciful warnings with a grain of salt. While I'm taking a calculated risk (well worth it, IMO), there is no such thing as "build-up," and concerns about it losing its effectiveness seem not to be borne out in my personal experiment. If someone warns you about damage to "organs," I suggest you ask which organs, and for a decent reference in the medical literature. Life is too short to be guided mainly by fear of the unknown.
C CanHercNavMember
I have been on 500mg of Cipro and 500mg of Flagyl for the past 13 yrs. My gastro prescribes it to keep the little bit of inflammation down in the pouch.
I am a military aviator in the RCAF, flying in CC130 Hercules aircraft all over the world. Spent time in Afghanistan, Iraq, Haiti, Africa and many other not so great food areas. Although I am always careful of what I eat still I have been in some pretty sketchy areas and have never had a problem with my pouch. I always have my Cipro and Flagyl with me and if I have any indication of an issue I just increase the dosage a bit for a few days.
vanessavyvanessavyMember
quote:
Theresa


hey just remember to be careful for C.diff. Cipro causes that crap to form. I say that mainly since I know you work in hospitals and it is nasty stuff to get.

Xifacin is best for long term use. I currently take Tindamax for bacteria issues since I can never take cipro again and many other antibiotics once getting c.diff.
C CedarsFamMember
Daughter 4 months out of takedown surgery. She's 13 and is now battling pouchitis as well as a severe UTI that is in her kidneys now. She's taking 250 mg of Flagyl 4x daily, plus 250 mg Cipro 2x daily PLUS 9mg of Entacort 1x daily. Finally seeing some relief in her pain and she's so excited she's only been to the bathroom twice today! However, how do we tell which of these meds to credit? She had a pouchoscopy and they found small ulcers on her ileum but the biopsies were inconclusive for Crohn's. It better not be.....she was diagnosed with UC in 2007, we battled with every med out there and lost.....thus a 3 step surgery that's a cure.
K ktaMember
I have been on Cipro continuously for over 9 years. If I stop, the pouchitis comes back. I take 500 mg once every day. I tried 250 mg, but it doesn't work for me. Regarding the rotation issue, I asked my surgeon's nurse about it. She said not to mess with what works. I trust them implicitly. I don't think I have any side effects. In addition to the Cipro, I take VSL III daily and Tincture of Opium as needed, which is just about every 4 hours even in the night.

I think we can get so caught up in researching something that we are unable to take action. I read all these horrible things about antibiotics, about J- Pouches, about - well - just about anything. But then I have no problem with Cipro and I am forever grateful for my pouch even if it is not perfect. So I guess I hope for the best but understand that the worst can happen. If it does, I deal with it as best as I can.
A APMember
Bergie77,
I'm not a medical professional, but my understanding is that because the antibiotics seem to help people, that the inflammation and discomfort from the pouchitis is due to too much bad bacteria in the pouch. That inflammation is what we feel in the tailbone area. The cipro kills that bad bacteria providing temporary or permanent relief depending on if the bad bacteria becomes a problem again or not. It also kills the good bacteria and thats why many people take probiotics, to replace it.

My issue with Cipro is that is also caused constipation and my theory is that when I'm constipated I can't flush the bad bacteria out of my system and thats when the pouchitis begins again. It was a cycle. When I started taking psyllium fiber I was able to knock out the bad bacteria with the cipro and then continue flushing it out because I wasn't constipated.

Whenever I stop taking the fiber I get constipated and then in turn get pouchitis. Most of the time I don't need antibiotics to get over the pouchitis, I just take a ton of fiber. Only once in the past year did I need to take them because the fiber didn't work on its own.

Hope this helps. The frustrating thing for all of us is that there is not one "fix" for everyone, but this is what works for me.
Patricia WalkerPatricia WalkerMember
TheresaS posted:
Let me get right to the point before my explanation.

Can I be on Cipro forever???? (lol) Heck, even a lower dose than the round I was just on to maintain the beautiful results.

NOOOO, frequency, urgency, NO CREAM, no gas build up, no leaks, N O T H I N G that's been making me crazy daily regretting this surgery 12 years ago. Symptoms above didn't just start one day, or I'd have considered pouchitis, I've had the same symproms making me pissy since the day I had my takeodwn. (unless I've always had it since I got my pouch and no doc has ever bothered to treat it) I've never been told I had it nor was treated for it.

I searched the forms before i posted but it really is easier to have everything in one place for me to reference. I find so many different answers I get confused.

Cipro did an amazing job with my pouch, curing everthing i've been trying to change like the Vicidon did. I had the better quality of life I was lookig for and it really chagned my life in such a good way you have no idea. For a week I was the happiest I've ever been (aside from the week I took the Vicidon and had the same results. I was recently put on a round of cipro for a mild UTI and what an AMAZING difference Cipro made with my pouch. 500mg 2x daily

It seriously gave me such a wonderful quality of life I wanted to cry happy tears. Now I'm off of it and it's back to square one and it's depressing the hell out of me. Even with all the new things I've tried and researching I've done. It sucks I'm over it.

I know there's side effects just like anything else, and as individuals we all experience them differently if even at all. I'd really like some input on this. I've seen how happy many others were during their rounds of Cipro, and there has to be a way to maintain the wonderful outcome it offers.

I also see about rotating antibiotics, can someone give me a quick 101 on this? I like to arm myself with all the possible things that have ever worked for me before the doctor and I make a long term plan for me.

Can you tell how elated I am with the results of Cipro just for 1 week?? Seriouly I can't stress how it changed my life for the better. For the 1st time in 12 years I was happy. I want to maintain this.

Thanks everyone!!

I agree with everything you have said. A mirror image of my life.

The short time I was on Cipro my life changed.

My surgery for K Pouch was 40 years ago. In UK I am not allowed Cipro.

I have been nothing in its place.

I eat a really healthy diet and have no additives or colouring in food. I  a void dairy and fats etc. etc. What more can I say. I feel the medical professional has never believed my symptoms.

CTBarristerCTBarristerMember

I have rotated antibiotics for 22 years, cipro, flagyl, tinidazole, xifaxin, and augmentin being the main ones I have used depending on insurance coverages. Rotate every 1-2 weeks. If you do not rotate you will see the antibiotics lose effectiveness and, especially in the case of cipro, you are prone to yeast infections if you overuse it. As well as warts.  Xifaxin enables the skin bacteria to regenerate because it’s not systemically absorbed so always go to Xifaxin after taking Cipro to enable your skin bacteria to repopulate.

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