Has anyone been on cipro for this long and then started to slip back into going to the bathroom more, waking up at night more etc... I'm only on cipro and metamucil and have been for so long but its looking like its not enough anymore, perhaps i over-did indulging in surgary foods this thanksgiving? i started some flagyl this morning hoping to get it back on track, any other advice?
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Rotate antibiotics every 2 weeks. Cipro works well or better with flagyl, but you can also rotate onto other antibiotics like xifaxin and augmentin and keflex. Levacquin is another good one but it's closely related to cipro (both in the fluoroquilones family) and it's advisable to take another antibiotic between cipro and levacquin in your rotation. If you just keep taking cipro, it's inevitable that it will lose effectiveness. I have rotated antibiotics for 20 years and kept the symptoms although not the inflammation in check.
It's advisable, assuming your body cooperates, to have a set of antibiotics that do the trick for you. The search is a nuisance, since it includes trying whichever ones don't work. A set like that lets you rotate antibiotics as CT describes, which is probably ideal. I never found a single antibiotic other than Cipro that worked (Levaquin might have). I got a few years out of Cipro alone, which is luckier than you. One it stopped working, adding Flagyl (which never worked alone) did the trick nicely, and I've been stable on that for a couple of years.
CTBarrister - i will probably contact my surgeon then to ask about rotating. i have a habit of my body becoming used to medications pretty fast, thats one of the original reasons i went to a j pouch is after trying all the meds and biologics for UC i would get used to them after a few weeks and fall back into a flare, except pred lol that always pulled me out of one but we know long term what that does
Scott - I'm hoping to go on flagyl for 1 week or so, any longer than that and i normally the past few times have this intense nausea about 1.5 to 2 weeks in. not sure what causes it.
My antibiotics rotations have been closely supervised by 3 different gastroenterologists who have treated me over the last 20 years. Generally surgeons don't like to get involved in pouch maintainence issues unless another surgery or a structural issue is involved. Usually if it's an issue of nonsurgical pouchitis that could be a long term issue, which it is in many cases, they will ship you off to a GI experienced with J pouches. Frankly, you will probably get better supervision of your treatment if that happens, so long as it is in fact a purely nonsurgical pouchitis issue. Hopefully your surgeon, or even your insurance company, can steer you to an experienced GI with J Pouch experience in your area.
If you have a great relationship with your surgeon and the office monitors and supervises pouch issues that may be long term, you can pursue that, but I don't think most surgeons want to be involved in these kinds of issues. Their money is made on surgery, and this isn't really a surgical or postsurgical issue, it's a maintainence issue.
My surgeon keeps me around. anytime theres an issues i have always emailed her and we talk about it. sometimes she has me come in but shes been my go to GI for it all. i think im fortunate in that aspect.
Though it's far from ideal, there may be an anti-nausea med that enables you to tolerate Flagyl. That being said, there are plenty of other antibiotics to try.
It's not your body getting used to the meds, nor is this a tendency that persists between antibiotics. The bacteria in the gut can certainly adapt (become resistant) to antibiotics, though this will vary a lot from medication to medication.
As far as anti-nausea meds, I was prescribed Zofran during my recent cancer treatment by my endocronologist. The radiologists at Yale told me Zofran is the best anti-nausea prescription medication on the market. I took it preemptively when I consumed radioactive iodine and never experienced any nausea. I still have almost the entire prescription at home, as I never got any nausea after the preemptive dose. Drinking the radioactive iodine was sort of like having a salty drink of water. It went down smooth.
i vaguely remembering my wife giving me some of her zofran or some kind of nausea meds the last time this happened, the problem was it was 1 minute i was fine and then the next was kind of "what is this feeling, wow i need to sit down"
Radioative Iodine!!!! yikes
Nausea is a bit easier to prevent than it is to fix after it's arrived. Unfortunately that means taking the med when you feel okay, and (perhaps) experimenting now and then to see if you still need it.
being on c/f and enduring the awful side effects. one of them is constapation. can i take miralax
I think metamucil is a better alternative to miralax for constipation caused by cipro and flagyl- so long as you are drinking enough fluids as well. Increasing fluids is the best way to counteract any constipation and in many instances constipation is due to improper hydration coupled with the natural tendency of c/f to thicken up the stools.
I think im going to email my surgeon today. things havent changed at all yet and i feel like its still slowly getting worse
oh ty ct yes i think you are right. have not been drinking all that much mainly because i live in florida and have not been able to play pickleball as i used to everyday. i am away now-be back sat will try to play sunday morning. meanwhile i seem to be ok on f/c just tired and only wanting to eat crackers and bread. it is so nice to have someone to talk to tx again
i see by the amt of pills that i will be on this c/f for a month..is that normal??
I was once on cirpo and flagyl twice daily for a few months, so 1 month is good.
I just remembered something, this all started around the same time i started taking Etodolac, i wonder if thats the culprit.
oh ok first time for me just wondered what the "norm" was lol.
Hey all you folks talking about antibiotics... please take a look at VSL#3 DS which is a probiotic that is designed specifically for UC and Illeal Pouch. This stuff has the same amount of probiotics as about 400 servings of yogurt. You should get a Rx from your doctor because this is expensive stuff. While you get the Rx going, buy yourself a small quantity without the Rx so you can start immediately.
I'm a fan (and copious consumer) of VSL. It's just not enough for me any more, though I think it helps me keep the needed antibiotic dose pretty low.
anyone on f/c eating only carbs??? never did this before
Why would you eat only carbs? Besides the fact you won't get essential nutrients, excess carbs promote bacterial growth. It seems like the opposite of what you'd want to do to fight pouchitis.
Jan 
oh only because the thought of anything else makes me sick but ty i will stop as of now so nice of you to help
When I had UC, I started using Cipro heavily in May, 2012. Back then, it would reduce my BMs to 1 or 2 times per day.
By August of 2013, taking Cipro only reduced my BMs to about 4 times per day, so I do think it loses its efficacy over time, especially if you're over-using it.
Did I mention that CIPRO sent me to the hospital for psychotic reactions twice and one hospitalization found I had C-difficile, as well?
Cipro is a nasty, dangerous drug, so try not to rely on it.
Like most drugs, Cipro occasionally does nasty things, and it's miserable when it happens to you. It would IMO be a mistake to rule it out as a tool simply because the nasty things were confirmed to have happened to someone. I've been using Cipro for about five years with no particular problem. Cipro could cause me trouble tomorrow, of course, but it's been a *great* five years.
i was told by my pharmicist when taking c/f to stop taking multivitimin and any antidepressent drugs true??
Multivitamins (and calcium and dairy products) need to be spaced hours away from Cipro. *Some* antidepressants are risky with Cipro (e.g. amitriptyline), but others (e.g. Prozac) have no such interactions.
I vaguely recall the side of my prescription bottle for either C/F to wait 2 hours before or 2 hours after for multi-vitamins
Wanted to provide a suggestion for people experiencing constipation with Flagyl or Cipro. Obviously, the reason we are taking the med is to reduce the diarrhea caused by the bacterial overgrowth. These meds work too well sometimes that it then causes BMs to get too thick. Two things that I do to help.
First, as I've been rotating meds now for 5 years, I've learned dosing that works for me. I'm a small person and taking Flagyl 3 x per day is overkill for me. I might start the week taking 250mg tab twice daily, but then majority of my time on the med (I do 3 week rotations), I only need 1/2 tab once a day. I'm not advocating anyone get creative with dosing without talking to your GI, but this works for me. It's kind of a tapering effect.
Secondly, take this opportunity to eat all the healthy foods that you usually cannot tolerate! When your stools are this thick, you can probably now tolerate more fresh veggies and fruits and other fiber that would normally cause frequency to increase too much.
wow what a huge help to me you people are.. i am so happy to take your advice and at least have some hope. as jan told me yesterday i no longer eat carbs but fruit and salad. now one more question i experience pressure (is this pain) and want to stay in the bathroom. when i take a pain pill i feel better is this pressure really pain?? going to space out my vits ty all so so much
It sounds like your pressure/pain is related to gut spasm/cramping. Opiates would improve this. Acetominophen or NSAIDs not so much.
Jan
what would i do without you--i can never thank you enough. i called my dr and he will have an rx ready for me to pick up on monday for percocet. i think you have been right all along. not eating much bread and eating some salads. this group has been so amazing for me ty