Being on Cipro all the time is much better than being sick. That's what I do. I'm not aware of any tolerance effect. There can be side effects, but I haven't had any.

VSL probably helped me avoid the all-the-time Cipro for about a year.

how much cipro do you take daily or weekly / I also have never had any side effects when taking 1.5 grams daily for 7 days or 1 gram daily for 10 days

I take 500 mg/day. I take it at bedtime, so it's hours after Metamucil and any dairy products. I tried a lower dose, but it just wasn't sufficient. I found that for me once a day works just as well as two doses per day (of 250 mg), and the once daily dosing is much more convenient.

Maybe a very low carb diet would work as an alternative. I confess that I haven't tried it.

Hi Vince,
I am not a know it all by any means, but having been diagnosed at age 17 w/Crohns, now currently 52 years old, have learned many things over the years.
Great call on Chipro use, specifically (tolerance).
Tapering off to a stopping point always good so as not to build a tolerance to it.
Although you mentioned having to go back on it at times.
Everyone that shares our Disease of coarse responds differently to all the meds/treatments available these days.
My opinion, and just me, having been down the Chipro road many times, and alternating Antibiotics throughout the years, these certainly help but never to the point where I could say these (Antibiotics) in general really made me feel substantially better.
I'm currently on a maintenance dosage of Metronidazole (Flagyl) and have been for sometime.
One must be very careful with the Antibiotics we use in dealing with Crohns/UC etc. very useful but with some, in taking out(all)the Bacteria, good and bad in our (gut), causes even more issues etc.
Long story short, you mentioned VSL #3 for a supplement.
I say go for it if you already haven't.
Appox 3 years ago in dealing with a severe bout of Pouchitis, my GI (which I think the world of)
put me on VSL#3. Major different immediately on how much better I felt!
There are many different dosages available either in powder and capsule form.
He(GI)prescribed a heavy dose of VSL and I was very grateful that he decided to try this.
My prescribe amount being (VSL#3 Double Strength)in powder form @ 1 packet 3 X's p/day,
each packet in this form having 900 Billion Bacteria p/dosage.
You may want to give it a try, but make sure to consult your GI first regarding dosages etc.
FYI, VSL#3 Double Strength, which will be in the packet/powder form is by prescription only.
Good Luck and all the Best!
Jim

Hey guys, you need to rotate antibiotics. I have used antibiotics to treat pouchitis for 18 years plus. Any one antibiotic if used for a long time will lose effectiveness over time. In addition to that cipro is a very powerful antibiotic and if used for months continuously will expose you to yeast infections. The bacteria will slowly be killed off in your skin and the other microorganisms in your body (namely fungi and viruses) will occupy those empty spaces. This is why strategically it is a good idea to use xifaxin, which is not absorbed in the bloodstream, in any antibiotic rotation. It gives the bacteria in your skin a chance to repopulate and could prevent a bad yeast infection.

At the moment I am on a regimen of rotating lactulose one week with antibiotics the next. When taking lactulose I take a probiotic capsule as well as a probiotic beverage called KeVita. KeVita operates on the same principle as lactulose that acidifying the stool helps in obtaining the correct good to bad bacetria count. Hence apple cider vinegar is a key ingredient in this low calorie probiotic beverage which is an acquired taste.

I have also been on a Paleo Diet since January. The results after 6 months were very encouraging. If you have pouchitis that is chronic and you continue to eat sugars and carbs you are not helping the situation. Surgeons will tell you a person with a J Pouch can eat anything and while that is true, it is true short term. If you have pouchitis and are not keeping an eye on your carb and sugar intake you will pay the price. I have the scope pics that prove it, a massive deterioration in just 2 years which were year 18 to year 20 with the pouch coinciding with my membership in dinner and wine clubs. If you want to know how bad your pouchitis can get, just let me know and I will post the pics of a massive 2 year deterioration. Which I have reversed.

Hi Vince,
Your post interested me a lot because, at 23 years of age, I experience the EXACT same situation as you've described. I, too, seem to react very positively to cipro, which scares me a little bit because I'd rather not become dependent on such a powerful (bactericidal) drug.

Similarly to Scott F, I find myself taking a total of 500mg of cipro / day for months at a time.

I would also like to try the intense dose of probiotics, but given the availability where I live, will probably hold off while.

After doing a little research, I consider myself to have something called "irritable pouch syndrome," as opposed to pouchitis - but who knows :,)

I was asked to post the image of my pouch deterioration from 2010-2012, here it is:

Let me just add that the scope pics of my pouchitis looked about the same 1995-2010. The severe deterioration occurred 2010-2012, when my dietary habits got out of hand. My pouch was improved in 2013 and I expect by 2014, with my continued regimen, I will be back to where I was in 2010 - "simmering" pouchitis, but nothing as serious as the pic shown above.

thanks for the replies / instead of vsl#3 I started taking 4-5 pepto bismol tabs daily about a week ago and they seem to work (frequency is about a third of what it was) - also cut down on sugars but I never consumed a whole lot / don't know if it will last but so far so good

so pouchtitis is is mainly an infection that you can get. To cure it, is with antibiotics?
And the reason you know you have it is, many trips to the bathroom. How many? I think this is what I may have, but not sure! any responses would be great! LJK

It's probably better to think of pouchitis as a bacterial imbalance that results in inflammation of the pouch, rather than an "infection." In any case, a variety of antibiotics seem to get it under control promptly. Some folks are also helped by probiotics such as VSL #3, mainly to prevent rather than treat pouchitis. Symptoms vary, but it's common for people to report some urgency and accidents (day and/or night). A pouchoscopy can show signs of inflammation, but may not correspond precisely to symptom severity.

A well-functioning pouch is wonderful, at least compared with a diseased colon. An inflamed pouch is much less wonderful. Many docs will try antibiotics (usually Flagyl or Cipro) without a pouchoscopy just to see if it works.

Pouchitis often shows up as a one-time or occasional event, like an infection, and a short course of antibiotics clears it up completely. Some folks have symptoms that reappear as soon as antibiotics are stopped (antibiotic-dependent pouchitis). Some physicians rotate antibiotics every couple of weeks, while others stretch successful treatments out much longer.

Finally, there is a school of thought that diet may play an important role. The most common recommendations are low carb diets, or a low "FODMAP" diet.

I was on Cipro for a couple of years, and just switched to Xifaxan a couple of days ago when the effectiveness of Cipro began to weaken. My fingers are crossed.

No, it is not necessarily an infection (but it can be, such as those caused by C. difficile or cytomegalovirus). It is more of an IBD sort of thing, since it rarely occurs in those without IBD. Antibiotics work because the inflammation is from an autoimmune response to the presence of too much bacteria of certain types. At least that is the theory. People with IBD tend to be underpopulated with the "good" probiotic bacteria, and that is what is behind the theory of using probiotics to sustain remission or prevent pouchitis.

Jan

Personally, I've been remiss in keeping up my VSL#3 use. During the long period of no insurance before disability was approved, I was burning through my 401k like mad, so I trimmed down on anything I could, and VSL got the axe.

I've been taking it more of late, but not consistently. That probably defeats the purpose.

I must resolve to make it a priority.



.

I'm not on here much these days because since I started taking psyllium fiber over a year ago, I stopped getting pouchitis regularly. I take it loose and mixed with water about three times per day. I like to get on here once in a while and let people know that this worked for me because I heard about it on this forum and want to pay it forward. The tricky part about all this is that there is no one "fix" for everyone. I just feel compelled to share mine in case it might help someone. Also, if I do have a minor pouchitis flare up I do take VSL#3 and pound the fiber like 5- 10 times per day and that takes care of it. It rarely happens Good luck.