Not sure if this will help you, but have you tried VSL3? I have been off antibiotics now for a year and i give credit to the VSL3. I also take candida clear from NOW. instead of taking cipro to thicken up, i would eat nuts. There should be a list of foods that would be better for managing the output. I have a BCIR so not an expert on Kpouch.

Hi John,
I agree with Linda on the Probiotics instead of the anti biotics...you need to try to fight fire with fire...give the good bacteria a chance to proliferate and control the bad...I generally have a 30day run of probiotics every other month (I find that I don't need more than that) but you may want to try 3 months strait...also, try cutting down on white bread/flour, sugar and processed foods for a while to stop 'feeding' those nasty bacterium...I have never bothered with the 'expensive' kind but the OTC healthfood store brands or Walmart brands do just fine..
Hope that this helps
Sharon
Ps...brewer's yeast helps too

Thanks to both of you. I will try your suggestions right away. Very much appreciate your responses.

--john

quote:

bacterial overgrowth.

I am different than the rest. Probiotics make me worse and usually aid in the bacterial overgrowth kicking in. I take Omniceff on and off, only antibiotic that really helps m Cipro I take for UTIs only lately since it works for 3-4 days then doesn't do anything and I won't take a medicine that doesn't help. I have to go on Omniceff every time I try a probiotic since the probiotic does me in. My GI is also starting to say she doesn't think they work if you do not have a colon. They might work for you though. Align isn't as expensive.


too bad you aren't local to me. I have a whole box of VSL DS that I will never use.

in the olden days my surgeon gave me Doxycycline for pouchitis and for travelers diarhea. To this day, it's the only antibiotic that clears it out. In fact, I can take for only a few days and it will resolve.

Thank you Vanessa and Janice. I have lived with the k-pouch for 20 years with multiple revisions and complications, but surgery free for the past 12 years, albeit the recent scope showed some valve slippage. But I have never had any communication with other k-p'ers, which makes finding this forum truly wonderful. I'm sure that each of us has our own nuances and factors that affect how we deal with the k-p. Like Linda and Sharon maybe probiotics will work or like Vanessa I may find that probiotics are not for me and Omnicef is one I haven't yet tried, or like Janice, maybe dox is effective (Janice, does that mean that Cipro or amoxicillin doesn't work?). But certainly more options to consider is great. Thank you all, and I look forward to learning more and more from you, and sharing my own experiences too.

john

just a note: regular otc probiotics didnt do the trick for me. but when the doc started me on VSL3 he had me take half packet a day at first until my body got used to it. i guess the symptons at first resemble pouchitus. it is pretty powerful stuff. too bad it is prescription, but my husband's insurance covered it so it is cheeper for me. hope you find relief soon.

Cipro never worked for my pouchitis. I've had mine for over 30 yrs and as soon as it was developed my GI dr would try to prescribe it. But I explained how wonderful the doxycycline works and it's a dirt cheap generic. Plus I never have to take it very long. I too found probiotics made me have diarhea. It's a trial by error....good luck!!

Trial by error indeed. I'll try the vsl3 and see how that goes....Like you, Janice I've had my pouch for 30 years...not sure I ever had bonafide pouchitis, at least according to the symptoms I read about. Perhaps a more general GI overgrowth. It leads to emptying ~10 times each day, and real urgency that comes on rapidly, almost immediate with food intake...I haven't tried the dox, but will in the near future....thanks!

Do you flush out your kock pouch with water regularly? I would do this daily and flush until it comes out pretty clear and take probiotics daily too. Food can cause trouble, and so can Vioxx, celebrex and ibuprofen, etc.. Are you sure you don't have a food allergy? Just some thoughts. Get that pouch cleaned out and get away from irritating food and meds, whatever that is for your system. Start a food journal and med journal...see if anything causes trouble. Also, artifical sweeteners can cause gas and diarrhea too, even in sugar free gum, etc..

Thank you Jasmine...I do thoroughly irrigate the pouch every day and while people report mixed experiences with probiotics, I haven't yet tried them but I will. I like your idea of a food and med journal too.

--john

I don't have pouchitis I have bacteria overgrowth in the small intestine, so far that is my diagnoses. I have a box of VSL DS I will never even touch again.

Hi Vanessa. how do you know its small intestine overgrowth; what are the symptoms? I find I have to drain frequently and feel great urgency almost as soon as I eat something...

thanks
--john

Well I have had 2 pouch scopes that ruled out pouchitis. My pouch looks great. Bacteria overgrowth from what I read has similar symptoms. My stool turns very liquidy after I go off antibiotics for a few weeks and the smell is so bad the whole house smells like a week old garbage. I can't hold anything usually for an hour or two and I get a lot of gas. I get gas even after I irrigate and I know nothing is in there. I can also feel poop sort of spit out into my pouch instead of a nice flow. Like spurts, perhaps it is gas in there that causes that. I don't know if what I have is common but I know I can't live this way so I am going to see Dr Shen at Cleveland Clinic in a few weeks to see.

There is no test for bacteria overgrowth it is just treated with antibiotics and if you are better that is their answer. I am just so tired of it. Mine reoocurs. I also get sharp pain my my torso/ribcage and inside the pouch. Feels like glass shards are in there.

Dr. Shen is terrific. I really hope he can help you, Vanessa. Thank you for sharing.