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R
had my jpouch done in 06..from that point until a week ago i wasantibiotic dependent and have been rotating antibiotics for 5 years..two yearsago dr. shen concluded i did not have antibiotic pouchitis but sibo..small intestine bacteria overgrowth..still however needed to rotate antibiotics to simply not be dead meat!! in all that time since operation i had c-diff two times ..the lastest bout was a little more than two weeks ago..dr. shen told me to take vencomycin for 10 days to deal with c-diff and than suggested i go cold turkey off of antibiotics and just see!!!!! i need to add that approximately 2 months ago at his suggestion i dropped all starchy carbs completely and keep sugar intake low which i decided to do...the thinking being since they feed bad bacteria why not help fight that..

fast forward to fighting off c-diff recently and going cold turkey after that ..no antibiotics..i have never been able to be off antibiotics for even a few days in past..but with latest c-diff again thought my best chance not getting relapse was to give it a try ..that was 8 days ago..its freakin unbelievable first time off antibiotics in 7 years!!each day i marvel at it..i can only conclude if it holds that the strict adhering to diet for past few months has to be the answer to my bacteria overgrowth problem..!!!!! there is no other possibility..i just eleminated for 2 maybe three months now starchy carbs no exception..that is all grains,potatoes,rice bread completely..as for sugar still have fruit and any natural occurring sugar say in veggies etc...now i have to clearify his diagnosis for me was bacteria overgrowth nothing else causing my issues ..i had already been taking culturelle and ss boularii (but was doing that to keep c-diff away) he did say to add align to my probiotics which i did..but those and antibiotics was always needed to keep me going..

i will keep everyone posted as to my progress but if it holds and if your issues are overgrowth bacteria it seems the complete removal of starchy carbs and low sugar(outside of fruits) is only thing keeping me ok..my issues prior to this was frequency in going,not feeling emptied,having to go as soon as i put food to my mouth and the killer issue was feeling of burning and as if broken glass was coming out when it was out of control pain when going..it felt like it was raw skin opened down there..when on antibiotics the severe issues were under control and i could at least function..

now dr. shen suggested i only take lomitol or tincture of opium to slow things down if necessary..have not had to use it but a few times when i like idea of being able to sleep at night without getting up so much..

it feels amazing to not be on antibiotics,pepto bismo and so on..i am keeping my fingers crossed and some day may be happy i had the bout of c-diff or i never would have tried what i did!!!

no problem following the diet when you think its really changing your life trust me!!!

heres hoping any other patients with sibo diagnosis might have same experience..

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AllyKatAllyKatMember
I too was told I have a bacteria overgrowth problem. After a short course of xifican and endocort I upped my probiotics, told today to rotate them, and also decreases sugar snd starch. Been doing great. Also started drinking kefir, which is loaded with probiotics. Noticed a big difference once started on this.
Rebe did your scope show inflammation. Mine showed mild at the bottom and moderate at the top where food gets caught.
AllyKat
R Rebe0505Member
no i do not think it showed inflamation but if it did he always just said pouch looks good..some minor irritation may be in normal range as i had been told..i think the reason he changed my diagnosis to sibo was because three years straight he felt pouch looked good and the problem was more likely bacteria overgrowth because the valve between intestines is removed which prevents backflow of bacteria when there..

since symptom are often the same others could be mis diagnosed and if it is sibo than strict diet of removing all bacteria feeding carbs makes some sense..it might mean the difference between balance and non balance as might be case with me..
R
R Rebe0505Member
allykat when you were told to eliminate starchy carbs have you removed all from diet?i think you have to remove all...anything we can do to create a better balance might be our ticket to better pouch function and no more nasty drugs!!!!

dare i hope we who have gotten this jpouch and told it was the end of drugs forever might have our hopes realized????what if more people told they have pouchitis really have overgrowth bacteria and its a question of diet and probiotics???
R
R Rebe0505Member
allycat your drs may not have gotten there yet to see or appreciate the connection between diet and lots of our problems..as you can see from other thread going on this issue some other jpouchers with sibo are having success with removing starchy carbs and low sugar..its s simple as that to begin you can do that without the dietitian...there is some differences among us as to dairy and pro biotics but those two components carbs and sugar are the main culperts..my guideline has been scd diet by elaine gottshal for various intestinal issues .. sh e allows fruit and she allows some diary like the hard cheeses and butter..it has to do with the lactose..but no milk of any kind or commercial yoghurt..some people believe dairy encourages inflamation maybe that is the reasoning but its the starchy carbs and sugar that feed the bad bacteria..one can play around with the other things after following the removing of s.c and s.

do not understand the rotating the probiotics but i personally do not think they in and of themselves will do the trick...its kind of something that will not hurt but no proof yet they do anything in and of themselves..
R
R Rebe0505Member
remember i think the key hear is not low carb but NO SIMPLE CARBS.. NO GRAINS,PASTA,POTOATOS RICE,CORN TOO..that means all bread...sugar try to limit to just fruit (fresh) and whatever is naturally in say veggies..or if something says very low sugar..my exception has been greek yoghurt with 7 grams of sugar otherwise just fruit for me....i have made the homemade yoghurt but have not seen improvement to make difference yet..but no question this diet change brought me to no antibiotics..

my frequency is not regular but i still go maybe 8 times in 24 hours..maybe a bit more and always after i eat.. output consistency changes but i never care that much as long as no pain, or going constantly and big gy no antibiotics..

not perfect but big gain in my eyes..going on about 5 weeks now..
R
C clouseauMember
Rebe0505 and Alley Kat,
I saw Shen last week and have SIBO and have a stricture, and inflammation, at the top and bottom of the pouch. I was going to have someone make the yogurt for me Eileens book recommends since i have no time but if it hasn't made much difference for you now I wonder. Please let me know your success with her homemade variety. I am already gluten free and sugar free except for fruit, but eat faye yogurt every morning now. Also do you eat gluten free pasta and bread or NO bread and pasta?
I am now trying to alternate every 6 hrs hours a probiotic, cipro, probiotic and xifaxan and then repeat so far I am in the bathroom a lot more but will try a couple more days. Will let you know if it eventually helps, am using VSL3.
C
Jan DollarJan DollarModerator, RN, retired
I imagine that probiotics in regard to use with SIBO is as individual as they are in any other situation. You may feel terrible with one probiotic and great with another. Or you may not tolerate any. Maybe she was referring to yogurt as the source of probiotics, and if you are needing to eliminate dairy, it can be a real issue. But, from what I have read, probiotics are a mixed bag and have not come up as consistently useful. So, they are not a primary treatment.

That does not mean that you, as an individual, would not find them useful. Still, the first order of business is the right antibiotic to take care of the overgrowth. Probiotics are just for maintenance.

Jan Smiler
Jan Dollar
R Rebe0505Member
clouseau sorry i did not see your text..but for the bacterial overgrowth the big thing here is remove all simple carbs,(starchy carbs and sugar)..you are confusing the gluten free with simple carb free..thus no grains with or without gluten..and no for my sibo i have not found the homemade yoghurt more beneficial than my faze greek yoghurt..so the main difference is the carb free that has gotten me off antibiotics..thus no grains of any kind,includes all pasta,bread,grain flour products,no potatoes,no corn, no rice..sugar i limit myself to the sugar in my yoghurt,fruit,and perhaps a gram here or there in something..but i try to stay away from processed food as much as i can but do buy grilled chicken as example from supermarket i read ingredience..amazing how they put sugar and other unnecessary stuff in it! but i read it and make decision the closer it is to few ingredience the better..

in my opinion and dr. shens its the carbs that feed the bad bacteria so it makes sense to limit them..the probiotic in and of itself will not fix us but shen suggests align to take besidesdiet elimination..it cannot hurt but no proof any probiotic works for pouchitis or sibo..period..
R
C clouseauMember
Rebe0505, I am out of the country and have your book and have been trying to follow it as much as possible and have seen some results. You are right the book is a must. I want to thank you again for all your comments and help on this. I will do whatever it takes to get off antibiotics and while I am not off yet I believe I can reduce my dosage bit by bit. It is a lot harder when you are out especially in a foreign country and will be easier when I get home in several days.
C
R Rebe0505Member
clouseau...rebe here..i wanted to clarify question you had ..if i was gluten free..the answer is i have removed all wheat the biggest gluten problem in addition to corn,rice,potatoes ...no exception..but i have not concluded that the home made yoghurt is necessary..i think trying to cut out above even more important in my case of sibo...also processed foods fyi often have gluten..but i avoid processed food almost completely..i use almond butter in jar but it just says almond butter and sea salt as ingredient as example..

clearly my new diet is only reason i am off antibiotics..but now i am trying to up my game and see if i can improve my function otherwise...so testing different veggies etc..and trying to see if they are irritant so that i go too often,and right after i eat almost always,would love to cut down on my times i go in middle of night..so i too have other less than prefect pouch function..but pretty much major drug free which in turn protects me from cliff issues and my body adjusting to antibiotics making them ineffective..
R

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