Rebecca-

My Doctor told me try the one week on and one week off. I was never able to pull it off until I went on the Paleo diet. I just found out that my insurance is covering VSL#3 DS so now that I am back from vacation I am doing one more week on cipro and flagyl then my off week will be on VSL#3 DS and we will see if I can extend the time off antibiotics.

I rotate the antibiotic weeks between cipro and flagyl, xifaxin and augmentin.

CT, have you given up on the lactulose that you were using for a while?

Scott,

I did give up on the lactulose. It was making me runny and I had to cut back on the dosage but it did not really seem to improve anything in terms of keeping the pouchitis at bay. I am ready to try VSL#3 DS and took a test dose last night but I decided to wait a week and make sure I am totally pouchitis free before I go on it full time cold turkey, because I had some seepage the last few nights.

Do you take VSL#3 DS with cold water or in cold food? I tried it just dissolved in cold water. It is not a bad taste, it's sort of like protein powder.

scott i really think for most of us suffering from pouchitis/s.i.b.o. nothing but antibiotics and the inclusion of diet seem to really help(sigh!)

the catch is of course the same antibiotics become less effective over time and one runs risk of c-diff if one already has had it..above all apply to me anyway..

the diet has or seems to aid most of us one way or another as to being able to cut down dosage..

personally although i take probiotics i have yet been able to see them make a difference.before diet or after..(sigh!)

its sad they still haven`t come up with anything safer and more effective to help us since antibiotics for above issues..

i am going to try ct barristers approach of one week on and one off....two nights ago from sheer exhaustion of my up and down state and going so much to bathroom in a day i took some leviquien 500 mil..had not been on that one very long time..have had the best two days in do not remember..no pain,no urgency,no running to bathroom 15 times in a day..of course diet in the mix because i am sure it has proven to cut back on bacteria or inflammation just has not been enough to permanently stop antibiotics..now just to figure out how long on antibiotic and rotate various ones..that will be the trick...

later this month i have appointment with dr. melmed at cedars in l.a. recommended by dr. shen..someone closer to me (i live in cal)for maybe some new incite or guidance..hoping i like him..

although i have had two good days i am feeling a bit discouraged because i know i hardly have the answer yet to this ongoing battle..

Has anyone tried wormwood? My husband has tried it for his sibo/pouchitis and has seen it make some difference.

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Has anyone tried wormwood?

Are you referring to the perennial? I have one growing in my garden. Do you suggest that I start eating it? This is what it looks like:

http://www.generousgardeners.o...5cfe3<=B&la=a&lp=6

I actually went off the diet since starting the augmentum and found that I'm actually doing better. I tried to restart and on those days I did worse. So confused???

quote:

I actually went off the diet since starting the augmentum and found that I'm actually doing better. I tried to restart and on those days I did worse. So confused???

Actually I am confused by your post. You went off what diet? You tried to restart what?

Unless I'm traveling I mix the VSL into yogurt. It becomes essentially undetectable to me. I can tolerate it in water, but I find it a bit yucky.

CT, why wait on starting the VSL? Although the evidence is strongest on preventing pouchitis, there's also data that suggests it helps in active pouchitis.

quote:

Are you referring to the perennial? I have one growing in my garden. Do you suggest that I start eating it? This is what it looks like:

I was referring to Wormwood in the supplement form.

https://www.swansonvitamins.co...mwood-100-mg-90-caps

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CT, why wait on starting the VSL?

I heard from my doctor it is best used with the pouchitis at bay. I was really runny the last few nights coming back from vacation and wanted a solid week of cipro and flagyl before I start it.

quote:

I was referring to Wormwood in the supplement form.

https://www.swansonvitamins.co...mwood-100-mg-90-caps

I wonder what they do to turn the plant into a supplement? I have a wormwood perennial growing in my front landscaped area garden. I planted it in May and it seems to be doing well, has grown a lot. I am wondering what these companies do to transform the plant into a supplement and whether I can do the same thing for free?

I was following the Paleo diet. Since starting augmentum I went back to eating my crappy ways, ie carbs snd sugar. On the days that I restarted not eating carbs and sugar my pouch actually was behaving poorly. So confused???

Does anyone have anymore information on wormwood and why that would help -- or ho wit has helped? Thank you.

alleykat understand why you feel confused.. that is very very strange and makes very little sense to me about going back to eating sugars and carbs made you worse..

perhaps it was just timing..because it just does not fit..the adding of carbs and sugars is feeding bad bacteria and increases inflammation and can have some benefit to different degrees..this is something now recognized by medical community and in dr. shens article but it is possible it cannot help at all or be of limited help ..but causing you to be worse i just can`t put my arms around that..if antibiotic working it should anyway over ride effects of diet good or bad...are you taking 500 or 1000 mil..maybe you need the 1000mg dosage for now but i would stick to diet and figure maybe antibiotic is issue..anyway thats my take on it..

what kind of difference are you talking about with husband?he goes less,has less or no pain,stopped leakage and so on since just adding that to whatever else he does and does he have refractory pouchitis/s.i.b.o...and if improved or eliminated issues for how long a period?i think that would be helpful for us looking for more answers..thanks

ct..i take the probiotics continually (do not use vsl#3 however) figure worse case i am wasting it ..best case i continue to add maybe good bacteria on going..it certainly will not hurt...
but am impressed with your dr. for constantly trying and changing up as you have been battling this a long time..and he is creative..

truth is no body knows for sure exactly what to do drs. are all just trying to figure it out too and hope they hit upon something that helps any one of us..

i read dr. shins article or research on" what every g.i should know " jan has posted..and it was quite extensive ..so far they seem to be identify the different disfunction's of pouch and giving them labels and doing research on who and why patients may have the problems..however,he says ongoing pouchitis/s.i.b.o. continues to present challenges to which they have not figured out as yet..and within the group of patients with disease(by that he means pouchitis..yikes!) different variables among them (two of which are genetics,operation itself ) causing the same symptoms create even more of a challenge as to what may or may not work for each of them..

when i go to cedars at end of month will be interesting to see if shen has missed anything..

meanwhile we all keep plugging away with oregano oil(heard that one yet?) and woodworm,looking for the evasive magic bullet..

i recommend everyone interested read that post by jan of shens article on research for pouches..

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I was following the Paleo diet. Since starting augmentum I went back to eating my crappy ways, ie carbs snd sugar. On the days that I restarted not eating carbs and sugar my pouch actually was behaving poorly. So confused???

Alley Kat,

Feeling good one or two days does not mean anything. Reducing carbs and sugars over the long term is what will reduce SIBO. It could take 6 months to a year. I doubt eating carbs and sugars was the reason you felt good, more likely it was the augmentin. Maybe you just had a bad day or ate something that did not agree with you?

Bottom line is if you are going to implement dietary changes you can't expect to make judgments after a few days. All of the available studies show it could be up to a year and if you are not in it for that long haul, then SIBO will not be reduced by diet. You definitely will NOT be making SIBO better by wolfing down carbs and sugars.

ditto what CT said. None of this is an overnight process.

K your all right, I've been depressed and needing my chocolate. my Dad just passed on top of this flare up
I promise to go back to Paleo this week or look more into SCD.

quote:

what kind of difference are you talking about with husband?he goes less,has less or no pain,stopped leakage and so on since just adding that to whatever else he does and does he have refractory pouchitis/s.i.b.o...and if improved or eliminated issues for how long a period?i think that would be helpful for us looking for more answers..thanks

My husband notices that he has less frequency and feels better. We believe that he has sibo because when he has had tests his pouch looks to be in good shape. He didn't see results in the first few days but about after a week. Wormwood is not supposed to be taken long term so he doesn't stay on it for long periods of time.