Ct,
My issues are very similar to yours. I still take vsl3 ds and although it does nothing for my chronic pouchitis, I continue to take it to avoid c diff from constant antibiotics.
Within three days or so off antibiotics, my anal canal is on fire and I often start to bleed. I don't have the usual cramping, urgency and diarrhea that others describe. Lately even on low dose antibiotics I still struggle with nighttime leakage at times as I have ulcers in the distal pouch that will mostly likely never heal. I just hope they do not worsen.

jeane,

I also experienced butt burn and that anal fire sensation the last couple days before I gave up on VSL#3 DS, in addition to the other symptoms. No bleeding though.

I plan to hang on to my VSL#3 DS supply and take a packet between antibiotic dosages for the reason you suggested: as an anti c-diff measure. However, I have never had c-diff despite being an involuntary antibiotic "abuser" for almost 20 years now. I don't know if that is due to luck, or having diligently rotated all antibiotics I have taken.

I'm sorry the VSL alone didn't do the trick for you, CT.

I'm not aware of any evidence that VSL helps prevent C diff. I guess it might, though, and won't do any harm. If that's your goal, though, you could add S. Boulardi as a more targeted approach. S. Boulardi would also be less controversial *during* antibiotic usage, since it's definitely not killed by the antibiotics.

CT, even though the VSL alone was insufficient to help with (or even delay onset of) pouchitis, it might be worth experimenting with using it during an antibiotic course, too. My rationale would be that (assuming it's not completely destroyed by the antibiotic) it would have more time to work. The time course you described may simply be too short for VSL to have any effect - the underlying pouchitis conditions just came roaring back immediately. Just a possibility...

quote:

CT, even though the VSL alone was insufficient to help with (or even delay onset of) pouchitis, it might be worth experimenting with using it during an antibiotic course, too. My rationale would be that (assuming it's not completely destroyed by the antibiotic) it would have more time to work. The time course you described may simply be too short for VSL to have any effect - the underlying pouchitis conditions just came roaring back immediately. Just a possibility...

I did consider this possibility. The problem with my pouchitis is that it has NEVER been completely eliminated with antibiotics, it has been held in check in what my GI described as a perpetual "simmering" status. Perhaps I would have a better shot at having VSL#3 DS work if the pouchitis could be stamped out in the first instance by antibiotics. But it never has been.

I realize that 6 days is not exactly a long time for any treatment, so what I'm going to do is take the VSL#3 DS at the rate of one packet per day between antibiotic dosages, and then attempt a cold turkey week off antibiotics once again, and see what happens. However, I'm not holding out much hope for VSL#3 DS being able to effectively treat the pouchitis alone, especially since the antibiotics have failed to completely stamp out the pouchitis even at higher dosages.

I have nothing to lose- I have two whole boxes of VSL#3 DS in the fridge, and there is no sense in throwing it out. At worst, it is a very expensive placebo. At best, your theory might work.

ct i too am not surprised that the probiotic in and of itself does`t helps keep pouchitis away...but thinking the same as scott maybe being on it all the time is better than just every other week..i know your dr. told you it is a waste but that does not seem to be a consences on that..i take the probiotic everyday and just make sure there is between 2 to 4 hours in between the antibiotic and probiotic..

i do not think the probiotic will be a deterrent for the c-diff ..ss boulardi is what it often recommended.i think you have been lucky not to have c-diff.once you have it however you are more prone to it returning..its a spore that just lays low.

i too could not make a week off antibiotics now when last i tried.so new plan two weeks on alternating antibiotics hopefully being able to keep down to one half regular dosage..seems like this seems to be where some of us fall with diet..

i do think it interesting and strange but common among chronic pouchitis sufferers..our patterns change ..as you know back in dec thur march i was able to get by off antibiotics totally with just diet and taking antibiotics...you and i have experienced changes in our rotating ability...that is sometimes we do not make our two weeks for example and sometimes we do..allykat seems to think she is stable doing something and bam she is not ..and so it goes..maybe my description of our pouchitis disease is just a target in motion after all...sigh!

quote:

my description of our pouchitis disease is just a target in motion after all...sigh!

That is a pretty good description based on my 20 years experience with pouchitis. It is a moving target and the treatment of it has changed over time..........

Hi, it's me again, the oldest j pouch we know, I was on Cipro for about two years straight, and then went vegan, and now I've managed to obliterate so many symptoms, you wouldn't believe it. Admittedly I take some trouble to provide myself with a healthy diet which includes all the foods vegans like - though I've only recently been eating fresh salads etc. but up till now mainly cooked foods like lentils, cooked veggy, soups, an egg (not vegan, but light easily digested pure protein, one really needs no more protein than an egg a day) lots of tahini, humous, whole grains (rice, oatmeal, quinoa, couscous etc)I eat plenty of rye bread or spelt bread (yummy, but pricey) and on the whole find there's lots of choice, especially if you live in NYC!
Tami

tami so glad you are doing well...with our moving targets as i call chronic pouchitis suffers being vegan is a new one for me..not sure why that would work on pouchitis as the meats and fish we eat are protein and not a source of feeding bad bacteria..

however,if it works for you great keep us updated..

Has anyone else here tried cutting off all those animal related antibiotic infested products? There is unending evidence that the antibiotics used on animals is detrimental to mankind's digestive tract!!! But industrial meat is now the easiest and cheapest way to feed the masses.... Which isn't to say we can't still make our own choices about what to eat....!!!! I cut off milk products four years ago and there was an immediate improvement , and then gave up meat two years ago and have never felt better . My stock of Orabase Protective Paste, which is another of my recommendations for which no one on this board has ever offered any feedback, although, to be frank, is the best way to protect and heal a burning anus, hasn't been depleting as it used to! It's a shame no one has tried my suggestions.... I'm the oldest (therefore most experienced pouch here, no?) My doctors (they're a team, one's a surgeon and the other's a GI) want to start a survey about veganism and pouches. Is anyone here a vegan....? And if so, has it helped?

Did u take 4 packets a day? I tried that once and it worked.

Even though I was prescribed 2 packets I took 4 the 1st 4 days, 2 the 5th day due to travelling to NYC, then 3 the next day, and by then it failed. My doctor told me 2 is more than a sufficient dosage.

VSL#3 also failed when I took the predecessor regular strength version in the 1990s.

Îm not a vegan but only eat organic and grass fed products and I still suffer from pouchitis.

As we all know, all bodies are different, but I would definitely recommend giving VSL #3 DS another shot at the 4 packets/day dosage. I had NO improvement with the regular strength VSL and also no improvement with taking 2 DS packets/day (took for 6 months), but a few months after starting the 4 packets/day my symptoms dramatically improved. I had my surgery 4 years ago and have battled Chronic Pouchitis since June 2011. I've been hospitalized multiple times since my original surgery, but have not been in the hospital since I started the VSL #3 DS at the 4 packets/day dose. I am religious about taking it - I travel with it etc. I pay $700/month out of pocket for it (insurance won't cover any part of it) and while that is a huge financial burden, it has provided such incredible relief that I am willing to sacrifice a lot to have it.

It's a more harmless drug than so much of what we all have been prescribed throughout our illnesses and I believe for that reason it may take longer to kick in. It has been a life-changing medication for me, so I definitely recommend giving it a shot.

Best of luck

I have not given up on it. I am currently taking xifaxin morning and night and one packet VSL#3 DS in the middle of the day. I will try going off antibiotics again in another week or two when I feel good. The 4 packet a day dose has to kick in at some point, the question is will I ever be able to make it to that point without needing antibiotics. My deteriorations when I stop taking antibiotics have become intolerable within 6-10 days. If it takes 30 days to kick in I will never make it that long and I will be in the ER and in horrible shape before it happens. My doctors told me do not let the deterioration get out of hand and this last one was out of hand after 6 days.

How long did it take in your case for the VSL#3 DS to kick in?

apa and others, thanks for including the recommendations for using more than one dose per day. I am going to increase my dosage. Especially since I've discovered I have a "large" pouch and now have a confirmed pouchitis diagnosis. In the past it wasn't active during pouchoscopes. I use one DS per day and take it while taking my antibiotic, at least 3 hours in between doses of the antibiotic.

I don't care if my insurance won't cover it at this point.

s.boulardii is the c.diff prevention of my choice. I have been taking it religiously and have not had a recurrence of my post surgical c.diff infections since I started it.

Good thread!