Coming off Antibiotics?

The speed of stopping Cipro is unlikely to make any difference at all. Pouchitis coming back isn't a withdrawal syndrome, it's just pouchitis coming back. Depending on the strength of the pill you're taking you might be able to cut the dose in half and see if that lower dose does the job, which would be very useful information. 

The dose of VSL #3 might a difference.  If this is your last-ditch "am I stuck on antibiotics forever?" effort then I'd suggest starting a maximum VSL dose (4 DS packets daily) before stopping the Cipro.

The only thing that got me off antibiotics was medical cannabis. Charlotte's web is an over the counter (well, mail order) alternative that may be helpful. 

Hey, Avery. I hope you're well.

In general - you probably know - long term antibiotic usage or repeated antibiotic usage is more harmful than learning to live through pouchitis bouts.

For example, either Cipro or Flagyl eventually cause your tendons to weaken and break down. More acute consequences develop over time.

Probiotics haven't been particularly or consistently effective for me. With diet, I only know certain things to avoid; no specific diet has reliably improved my quality of life.

I've just had to deal with pouchitis most days since takedown. I only take antibiotics and/or steroids to avoid or recover from gastroenteritis.

You gotta do what you gotta do to live a decent life. That said, it's imperative to avoid regular antibiotic use for a lot of reasons. Some aspects aren't dissimilar to why you can't take steroids, like prednisone, all the time. If you feel like you need to learn more, bring it up with your doctor.

I disagree very strongly with Griffn's post. It's true that antibiotics create the risk of various side effects. Nevertheless, even in a post-fact society it's not true that "it's imperative to avoid regular antibiotic use." It's not true that "Cipro or Flagyl eventually cause" anything you might list, though they each sometimes cause trouble. For most people with antibiotic-dependent pouchitis, the greatest risk may be loss of efficacy of the antibiotics.

If your pouchitis symptoms are mild you might reasonably choose to skip antibiotics, or use them intermittently. If pouchitis makes you stay at home, or forego pleaureable activities, or significantly constrain your life, then I suggest you find a way to have a proper life, even though it entails some risk. Being driven by exaggerated fear is a terrible way to live, I think.

Yes, I agree that I do not want to be on antibiotics if I don't have to be. Thanks Scott, it is important to guard from fears and I will be continuing to talk to my doctor throughout this. Unfortunately, in the past when my pouchitits came back I wasn't really able to just deal with it. I was basically in the bathroom or on the floor in pain.  It does frustrate me that I have traded steroid dependency for antibiotic dependency right now, but I won't give up yet since I'm only 3 months post take down. 

For most people long-term steroid use is much, much more destructive than long-term antibiotic use. It's best not to treat them as the same problem just because they both come in pill form.

Scott is definitely right to not be ruled by fears, and that steroid dependency is much worse.

Antibiotic use is just a damn complicated issue. Even for the individual user, not just the general population. Some people tolerate steroids and antibiotics better. Some people respond to each better. Of course the side effects over time aren't comparable. I'll say in my case, antibiotics noticeably lost effectiveness within a single year - repeat usage, not continual. (My doctors were competent enough to keep my prednisone use minimal.)

My point should've been more along this line:

You need tight and regular communication with your doctor if you're taking antibiotics often. It's complex. Please do not take my word on any of that. I think you need to exercise some caution. (The muscular risks with Cipro are substantiated by studies, for example.)

Most of the recent concern around antibiotics is about the effects on an entire population. There's enough data on individual use, though. It's smart to have a sizable talk with your doctor about risks.

I talked to my GI today and she is going to scope on Tuesday and see how things look. Then she thinking about doing rectal therapy (rowasa maybe?) instead of the antibiotics at least for a while and she is hopeful that since I am not that far from takedown that we can figure out a decent treatment. I'll keep troubleshooting! Thanks for the responses! 

Hi there, I was stuck in your dilemma dependent on antibiotics but for Perianal disease..... every time i stopped them the problems returned. Its a dreadful dilemma and it turned my life upside down because the side effects honestly devastated my quality of life and I have posted on this board before to try to warn others that if Cipro hits you hard, (and there's no way of knowing if / when), it's not good at all. The side effects can be so devastating that the FDA have released updated warnings of multi system disability for these drugs last year. It's not fear mongering, these warnings are way too little and far too late with zero communication to doctors on the ground who consequently mostly remain ignorant as to the scope of what can happen and the delayed side effect profile. Look up floxed, or flouroquinolone associated disability, there are over 70 online support groups for the victims of these drugs. I wouldn't have touched them in a million years had I been properly informed about them. They were developed to fight the plague, and anthrax, pls know that they are big guns. 

I got off antibiotics by starting aziothiaprine but I continue to suffer years on with disabling musculoskeletal side effects from this time. Some members on this board manage to take them for a long time with no problems but for others even a few pills can lead to neuropathies or ruptured tendons. There's no way of knowing, It's Russian roulette. I hope that you can find ways to manage your pouchitis and get off them with no problems, which of course is he most likely outcome! Take care, 

A short course of Cipro caused systemic tendon issues throughout my body. I got floxed and it took me at least 6 months to recover and i'm still dealing with it. Like Claire said antibiotics is Russian roulette. 

Some natural alternatives I recommend

1. Paleo diet (no sugar,dairy,starch,fruit, preservatives )

2. oregano oil (put 4 drops in a capsule with EV olive oil) 

3. Probiotics (take two capsules 10 minutes before you eat)

4. digestive enzymes with meal