Anyone on cipro/flagyl long term for pouchitis with no issues?

Jeane, my husband has been on cipro/flagyl, rotating with rafaxmin for the past 8 months. He did really well on cipr/flagyl for the past 2mths, now they are no longer helping so back to the rafaximin for a month. Then go back to the cipro/ flagyl. He does not feels as well on the rafaximin. He suffers with joint pain- not sure if its the pouchitis or the cipro. But he feels great when he initially starts the cipro/flagyl combo (feels good for about 2 months) He takes probiotics twice a day. The risk is worth it to him to feel somewhat "normal" for a while.

Jeane,

As you may know, I have been on cipro and flagyl at fairly high dosages for 17 years, no joint or tendon issues. Only problem that arose was a terrible yeast infection I believe was caused by staying on them too long and not rotating. When you take 1000 mg cipro and 1000 mg flagyl daily there is a massive genocide of skin bacteria enabling fungi to flourish in their absence. That coupled with not drying yourself well after showering is all it will take. I learned my lesson BIG TIME and now I am careful with when I rotate and also copious in drying certain parts of my body after showering (the legpits being the most vulnerable to this infection, at least in males).

I have been on them multiple times,for pouchitis, and for abscess infections, including iv of both. I always thought cipro/flagyl combo was the first line of antibiotics treament for pouchitis. Cipro causes me horrid joint pains. Also within 5 days no matter what I will have yeast infections... and not just in the lady parts! So now if I have to take cipro, I take diflucan as a preventative. Flagyl makes me completely lose my appetite. Been on that for pouchitis, abscesses, and also cdiff infections.

When I coulnd't tolerate joint and yeast problems from cipro, I got switched to rifaximin and it helped the pouchitis about the same.
glad to see your trying some new things.

Thanks guys.

Interestingly enough my jpouch has been the BEST it has in 19 months (only used the bathroom twice all day and no more diarrhea). On a bad note, I felt my throat tighten today and had a hard time swallowing for a bit and when I read the cipro side effcts after, this is one of them.

I am afraid to take my night dosage esp since my husband is away on business as I may feel panicky if this happens again and it could be the start of an allergic reaction possibly. I may hold on it and take the flagyl and contact the GI in the am about this. Has anyone else experienced this?

I have to admit the black box warnings are very scary with the joint issues especially since they can occur long after stopping the medicine and within a short period of time. The throat tightening was scary today but it did pass in about 15 minutes as it was not immediately after I took my meds, but a few hours after. I am encouraged by DJB's experience on long term doses.

jeane,

I have never had any issues with cipro and flagyl (or any other antibiotic) other than the aforementioned yeast infection, in 17 years. I am concerned by the symptoms you described. Others have reported those symptoms with flagyl from what I recall. Definitely report this to whomever is prescribing these drugs, immediately.

I have used Cipro on and off for 2 1/2 years. I have not noticed any side effects other than the fact that it's not really working for me anymore. Long term = decreased effectiveness. Perhaps not for everyone, but seems like you had the same fate with Augmentin (as did I).

CLz81,

Actually augmentin started causing me real issues (diarrhea, stomach pain,cramping,night leakage). I have now been off all antibiotics for three days and feel good. not sure how long it will last for but I will take anything after 18 months on non-stop antibiotics.

Sorry to hear it has stopped working for you. Maybe if you rotate or stay off for a bit, it will regain it's effectiveness.

HI,
I've been on Ciproflaxin for two years. Being allergic to Flagyl and my doctors wary of Augmentine long term, and Rafaxmin not yet available in Israel, leaves me with Cipro. It works well for me. I don't take a probiotic as my doctors say research shows it to be totally ineffective while on the antibiotic as the bacteria gets obliterated by the twice daily dose of antibiotic. I take 2X500mg a day with no side effects at all, other than an improved everything (fistula dormant, cuffitis dormant and bowl calm cool and collected ). Every couple of months I feel a reduced degree of improvement and rotate for a while with the Augmentine which works a treat too - a month or so - and go back to the Cipro. This is a good state of affairs for me. I hope things stay stable for at least, well, maybe another 32 years (that's how long I've had the pouch). I'd be blessed. Have a good day everybody!

Thank you for your response hichik. It is interesting to note your cuffitis is helped with cipro as mine was not with augmentin.

I am four days off antibiotics today and the bottom has fallen out. I was sick most of last night with cramps and stomach pain and the pouchitis diarrhea has once again started today. I am waiting today out and starting cipro tomorrow if no improvement. On top of that the canasa is not helping the cuffitis and my back pain is very severe. I have until Nov 11 to wait until my CC consult and I am not sure I can hold out until then.

Needless to say I had a pity party for myself this morning and I am trying to prepare myself for the pouch advancement surgery that most likely will not resolve my chronic pouchitis issues and may just open up an other can of worms. In reality, I am trying to prepare myself for a permanent ostomy and I am really losing hope regarding my medical situation. I cannot continue limping along in pain and discomfort the way I have been for way too long and my mental health is starting to deteriorate.

I am happy the meds are working for you. Continue to stay well.

Jeane,

Did you go off the cipro due to the side effects? I experience the same type of deterioration as you - within 4-6 days if I go off antibiotics. Fortunately, I can stay on them with no significant side effects.

Hope you can hang in there until the CC consult. Maybe they will try you on lactulose? Anyway don't give up hope that they will find something that works.

My experience everytime i go off antibiotics is that i every time get "pouchitis symptoms" a few days before it gets more normal again.

jeane: Wait out a couple of days if you can ..

Thank you for the replies. I greatly appreciate them.

CTbarrister...I got nervous with the throat tightening on cipro/flagyl. Our GI said to try cipro alone which I will do in a day or so if symptoms do not approve. Thank you for your thoughts and encouragement.


Norwegian.. I am trying this approach. The only issue is my lower back has been killing me the last couple of days along with the other symptoms. Event the heating pad is not cutting the pain at this time.

Jeanne, I think you need a hug. You are having a frightful time. Hang in there or be a squeaky wheel for earlier appt. I am on cipro/flagyl....pouchitis, cuffitis and bad lower back pain. The meds are ok, other than occasional headache, but the back is worse...have been taking Norco as needed... Upper g.I. this Thursday to see what's up. I feel for you, as you are bound to go through some depression. Force yourself to listen to some good uplifting music or read a juicy novel....feel better....Sally

Thanks Sally. Please let us know how you make out. Sending good thoughts your way too.

Jeane,
Thank you for your note. Hope you are better this morning. I had an epiphany this morning!! Wow, I've learned a lot from this site. My back pains have definitely worsened in the last two weeks while on cipro/flagyl, and my legs hurt so badly this morning that it woke me up from the pain. It's the drugs!! I was under the impression that it was pouchitis pain shooting through to my back, but I am at the tail end of my prescription and the pouchitis should be better. Just a thought! Sally

I used to get very bad muscle pain/joint in my legs and arms while on augmentin. i used to describe it as if someone were injecting poison into my veins. This pain I have now is related to the pouchitis and cuffitis as I have not been on antibiotics (5 days). I'm holding out a day or more to see if my symptom rapidly decline before taking antibiotics again as I was on them way tooo long.

I am so sorry to hear that. I guess I am hoping my pain is from the cipro/flagyl, and not the chronic pouchitis I was just diagnosed with. After neglecting my healthcare for a long time and just dealing with "it", I am still learning what is going on with me. You take care Jeane. Sally

I have taken only flagyl for pouchitis..now told to take with cipro. I will be away for one week and will not take any antibiotic during that time. then I will restart using both. has anyone lost weight from these--anyone not have bad side effects??

 

I've been on both Cipro and Flagyl for well over a year now (perhaps 18 months), and I'm doing just fine. Weight loss would have been nice, though. I don't think I've had any side effects, but I haven't gotten around to checking whether I can tolerate alcohol with Flagyl, and that would be nice to know. Do take the time to try to find the lowest doses that work for you.

I have been on Cipro/Flagyl continuously for about 5 years. For7 years before that it was rotational with everything we could throw at it. Nothing ever worked as good as C\F. I don't have any physical side effects. I will make this observation, with the disclaimer that I don' t know if it is influenced by medicine's:  I am in law enforcement and am a member of our peer support team. Law enforcement officers can become victims of post traumatic stress disorder we most commonly associate with the military. In my own experience, I believe the constant battle with my chronic pouchitis coupled with the stresses of my career is the biggest obstacle with my wellness. When I vacation, I am a new person. Couple days back and it' s back to the same health issues.  I know I am straying from the C\F topic, but in my expertience, attitude is very important. I know how hard it is to be positive when you don't feel well.  It has a natural tendency to spiral downward.  Dealing with this disease for years can be very weearing. Attitude can't replace medicine, but it my case it can supplement it. Stay healthy my friends! (Whatever that translates to in your case.)

ty so very much. I am so happy that I stumbled onto this group. I gad colon ca at 40. I am now 70  worked in hospice--much much stress. anyway I was not too bad until January of this year when every internal med dr. thought it was shingles--even 2 biopsys nothing shoed up. recently I had some surgery and a ct--found infection and leaks from the j pouch.been on hydrocodone but does not help much once the pain iis there.i had taken only flagyl. my pharmacist(who had the exact same thing) said I should be on both.i am taking a week off and then will start. did you need any of the nausea meds?? also do you think percoset is better that hydrocone?? ty so very much for your input..J

here is another question--is there any topical cream ( prescription) to use for severe itching due to pouchitis?? thanks

An antifungal cream may help with the itch. Are you seeing a GI surgeon for treatment of the pouch leaks? This is pretty serious and Flagyl will not heal it, but just subdue it. People have had to have pouch reconstruction because of this complication, so be sure you are getting top notch care.

 

Jan

 it is nice to know of others who share this problem. I will be taking both flagyl and cipro after I take a week vacation i find the pharmacist to be most helpful she advised me to use some hydrocortisone cream that I have for the itch.. we shall see.

what is cuffitis??

Cuffitis is inflammation of the retained rectal cuff. Causes bleeding and the symptoms of pouchitis. It basically is UC in the retained rectal cuff.

 

Jan

I think cuffitis would be very unusual for someone who didn't have IBD but rather had colon cancer.

ok thanks again I had colon ca at the age of 40  am now 70 battle is never over but I am so happy I have found all of you--sure does help--except for the pain lol

Quite true Scott. I was just wondering if there might be some undiagnosed IBD, since pouchitis is also unusual in those without IBD.

 

Of course, another thought is small bowel C. difficile infection (could mimic pouchitis and cause bleeding).

 

Jan