I first developed a c-diff infection while on Cipro.

FYI
I looked up Flagyl today, as I'm taking it to hopefully get rid of my c-diff infection. You might want to look it up too, scary potential side effects. I believe some people have Flagyl in their antibiotic rotations for pouchitis.

Jeane,

I am the same age as you (49), been on cipro since 1995, usually rotating it with other antibiotics. The worst thing that happened from staying on it for months as in 4 months plus, apart from it eventually losing effectiveness, was the development of a yeast infection. I then battled the yeast infection for months and did not turn the tide and defeat it until I went off the cipro onto xifaxin and took two megadoses of diflucan.

I know some people who developed tendon issues after 2 weeks of taking cipro. I think if these problems would have developed, it already would have happened to you.

You are not out of the woods on yeast infections and that is probably the biggest concern.

I have taken cipro, flagyl, xifaxin and augmentin since 1995 and have no ripped tendons and no other noteworthy side effects apart from the yeast infection from staying on cipro too long coupled with poor showering hygiene as in drying myself off very well after showering.

I read a lot of this the last time I was on cipro, since I was getting really bad fatigue/nausea. It is very unsettling and it has made me question going on it again. It's funny how society and even people in the medical profession have more or less accepted antibiotics as essentially benign medications, but many if not most of them come with a whole slew of side effects. It always takes my stomach at least a couple of weeks to "renormalize" after taking antibiotics. But I have been on at least 5 or 6 courses of cipro/flagyl between surgeries and pouchitis; at one point I was taking 1000mg of cipro daily, and that was only for suspected pouchitis. I would really like to avoid any antibiotics in the future if I can help it, unless I have an infection that definitely requires them.

I am on another round of cipro and so far have had no side effects from it that I can see or feel. What is may be doing to me otherwise I guess remains to be seen. I think my next round of antibiotics will be flagyl. I don't want to be on them forever myself but off of them I am a mess too. I have a neighbor who has a j-pouch that has been on cipro/flagyl for the last 8 yrs and seems to be doing well on them. He too can't come off the antibiotics without being miserable. I guess we all do what we have to do to be able to get on with life with a j-pouch. I am so happy for all the j-pouchers who have no issues just maybe increased bm's per day.

I am a chicken or egg type of person...which is worse?...the infection (or pouchitis) that you are on the antibiotic for or the side effects?
I went back on antibiotics for 1 week and seem to be trailing dizziness, nausea and immense fatigue ever since (2 weeks)...but then again it could also be the infection that is causing that and not the antibiotics.
Before my pouch fell apart in 1998-99 they had me on ever increasing dosages of antibiotics...went up to 2grms of Cipro a day and/or Augmentin...for close to a yr...not sure if all of the other side effects were because of the original problem or the antibiotics...again, chicken or egg.
In my case it wasn't pouchitis but negrosis between the pouch and abdominal wall...so the antibiotics were a waste of time. As soon as I went off of them the cysts and abscesses came right back...sometimes the choice is a lifetime on them or radical surgery...only you can decide.
Sharon

I was on Cipro for 3 1/2 years nonstop. For me, that was unacceptable. I was having minor issues - fatigue being the most prevalent. However, I was 30 and could not face being on drugs my whole life. After much thought, I opted for a perm ileo. Since then (11 years ago) I have been drug free (except for immodium as needed to make output slower). I'm not saying you should do this. I responded simply to say that there are people like me who would rather the ileo than the long term meds. I've since had two babies (now 7 and 4 1/2) and live a very normal life. Many of the people I know now never knew me when I was sick and they are shocked when they learn what I've been through because I appear to be a very healthy and normal mom - and I am.

Everyone has their own idea of quality of life and what treatments are acceptable. Only you can answer where the line is for you. Just know that whatever your line is, that is the right answer for you, no matter what anyone else says (I fought through three surgeons who wanted me to keep the pouch and long term drugs before I found one I who agreed with my choice).

I was on cipro for almost a solid five months almost immediately after takedown. I had unrelenting yeast infections which even daily doses of diflucan didnt resolve. And i had excruciating joint pain particularly in my hips and knees. Even with that my pouchitis didnt stop.

Ive been on it again - both oral and iv form - a few times after pouch removal surgery due to absesses and wound infections. Same side effects. Recently i was given it during an eua surgery and developed a very severe reaction to it. So bad that there was an anesthesiologist sitting by my bedside in the recovery room closely monitoring me while continually injecting me with high doses of benadryl. So now I can never take it again. Glad that poison is off my list.

But point being side effects may not initially appear but cummalative buildup of the drug couldncause bad reactions to occur.

JillM, did you have your pouch removed or just disconnected?

Thank you everyone for your responses. I appreciate your sharing your experiences.

I know the cumulative effect of cipro and prior antibiotics are taking their toll. Every joint and muscle in my body aches especially upon waking. I also have insomnia from long term usage. It is a dreadful feeling every day. I also wake with headaches every day now.

When comparing my quality of life before and after this surgery I have to admit it has been far from a win/win situation. My health is far worse now than before surgery even on constant meds and I'm pretty certain I do not want to take further risks of continually poisening myself with just a new set of medications when there are alternate options. This has been a long road and my husband I are now discussing whether to take the pouch out and hopefully be done versus opt for advancement which has unpredictable results and really may improve my condition. I really would like to hopefully be drug free in my future or would consider keeping my pouch if there were meds that were not so adverse for long term use.

I know how chronic my situation has become. I purposely missed by two 250 mg dosage of cipro ghe other day and by the end of the following day I was bleeding from the very end of my anal canal and had increased pressure all day. If I do not restart meds today I will be curled up in a ball in tears later running for the hot baths due to the never ending anal burning and pain only to be followed by bleeding. I hope I have the strength to make a decision from here and move forward. This has impacted every aspect of my life from my social and family relationships, as well as my mental and physical well being. I no longer want to be defined by my illness.

Jeanne - whatever path you decide to take, we are all here to support you along the way. We want you to get better, happier, and to enjoy each and every day of your life.
liz

I don't know if this will help you a little or not. I wake up with daily headaches. Since I had so much experience with dehydration in the hospital I've been drinking 16 oz of electrolyte/sports water the first thing. It usually gets rid of my headache. I use NUUN tablets in water but any replacement should do the trick.

I can't take Cipro anymore but when I did I felt ok, except for the last time I took it and got a c-diff infection. Please watch out for that too everyone. It acts like cuffitis which is why I have a hard time figuring out I have it. Every time I stand up I have to go and get bad BB. Since I've been on Flagyl for C-Diff the BB is gone and I'm going less. The problem is Flagyl makes me feel icky. Hard to explain but slight nausea and more aches and pains than usual.

I was feeling so bad, before I figured out I have C-Diff again, I was considering going to a perm ileo too. If I have these chronically, cuffitis and C-Diff, I will seriously consider what jeane is considering.

My question would be how do you knw the aches and pains are from the Cipro and not the cuffitis? I know my joint and muscles aches increase when my cuffitis is active.

Not sure it really matters though. Bottom line, you need a more long term solution...one you can live with.

Jan

HollyM - I had the pouch disconnected initially, but continued to have pouchitis, and developed additional issues so had the pouch out 18 months later. I had wanted the pouch out in the first place but had a surgeon who insisted the disconnect was the way to go. When I wanted the pouch out after the disconnect 3 different surgeons wanted to "save" the pouch, but I wasn't interested. Finally found a surgeon who agreed and I credit her with saving my life - the life I wanted to live.

It's really really really hard for me to figure what is causing what with muscles and joints as I have fibromyalgia and arthritis too.

Maybe the increase in my fibro pains are caused by cuffitis. Who the hell knows as they are all overlapping.

Jill. So glad you found peace and your health back. It is amazing how the surgeon's want to save a pouch more than a patient may care to. Then again, they were not dealing with pain and toxic medications for a long period of time.

Te Marie... The cuffitis always causes joint pain for me but my continual muscle pain with it I am certain is from two years on antibiotics. I was dusting this morning and any time I overuse my arm i feel that odd sensation in the shoulder joint and today I felt tingling. Not happy about this and trying at this time to once again get off cipro or change to augmentin if I cannot.

I wonder if FMT would be a better alternitive then cipro and flagyl with its dangerous side effects and also is believed to cause c. Diff. Fecal microbiota transfermation has cured uc and cd.

jeane...just want to add.. that my conversation with Dr.Remzi.. once I decided to go for pouch removal verse pouch redo/rebuild.. was so different than any conversation that I had ever had with any doctor ever. He understood completely that I wanted my life back and I was worn out from drugs and surgeries and didn't want to try and risk things anymore. And he complemented me on how well thought out of a decision I made. He really gave me true peace with the decision that I had already made. Just sayin... not all doctors/surgeons are alike. Some are just truly wonderful people.

There is a fellow j-poucher that had a fecal transplant and it took a month or so but was successful at treating his c-diff. It's been discussed with my Mayo GI. I haven't heard of it curing UC but maybe I could get a 2 for 1 out of it. Get rid of cuffitis and c-diff at the same time...... It is not a routine treatment. Antibiotics were not working on his c-diff at all. Mine usually goes away but takes longer dosage time than the usual 10 days.

This is interesting Liz as my current surgeon has pretty much left me in the lurch after he suggested the pouch advancement and I moved to a new GI and obtained a SSO at Cleveland. Since then I tried to contact him twice through email and he did respond to some of my questions (after almost three weeks) and addiotnal requests, but has not responded via a request for a phone conversation after saying he would try and get in touch to talk. So after that email, I have decided to move on from him as my surgeon as possibly he feels he can do nothing else for me without my agreeing to the advancement surgery.

Or he is scared you are going to sue him over the surgeries he performed. I'm jaded these days.

Where I live you have 2 years from when you "should have known" to sue and weren't your surgeries around 2 years ago? It is common curtsy for his office to contact you and tell you some reason why he's not responding. After all you paid him because he doesn't accept your insurance, I would be incensed! Sorry jeane, I'm always cranky these days. I know he is a good surgeon, that is why his behavior is troubling.