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Lindsay~n~SD
I have been battling Cdiff off and on since May. This month as I prepped for a PSC liver procedure I have been telling my doctors I either had pouchitis again or Cdiff again, the day before my liver EUS I tested positive for cdiff. I had to beg this time not to be admitted and for them to treat me at home with Vanco...
I have been in the hospital every other month lately with a terrible infection.
I have had my jpouch since 2007. I suffer from chronic pouchitis and now cdiff.
Does anyone else suffer from this all the time? My bm's are about 25 times a day. I am always in pain.
They said I don't qualify for a stool transfer because I am a high risk for infection and that could cause other infections.
I have ulcerative Colitis, Pouchitis, Primary sclerosing cholangitis and tons of other health problems.... but CDIFF I hate! HELP!
If I don't show improvement I go back to the hospital. I have some of the best doctors around, as I am a patient at UCSD.

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Lindsay~n~SDLindsay~n~SDMember
I think my jpouch is great and I have had lots of second opinions no one can figure out why I am constantly getting infections. I am a high risk patient. I have actually had doctors refuse to treat me when I went for a another opinion, because my history is extensive... very frustrating. I am familiar with him, Ramamorthy did my surgery.
Lindsay~n~SD
Scott FScott FMember
The criteria for fecal transplant are still evolving - it's very new, and there's a lot we still don't know. I understand their caution, but if I were in your shoes I'd press pretty hard for the fecal transplant. It is probably riskier for you, and it could turn out poorly, but from the sound of things the C Diff is having a huge effect on your quality of life. Good luck!
Scott F
TE MarieTE MarieMember
I agree with Scott. They have not gotten rid of the c.diff since May and it can kill you so what are they going to do about it. It sounds like you need some sort of duct work in your liver and how long can that wait? I don't know exactly what the liver problem is but it doesn't sound like it should be put on indefinite hold. Everyone is afraid of stool transplants as they are new and there is not a lot of data. I think they have been performed in other countries so can they use that data? In any event you need to find a brave doctor that isn't afraid you will sue him/her if the transplant causes problems I guess. I've had many cases of c.diff and am fortunate in that I've never had to go on vanco, I took many courses of Flagyl. It's horrible to have and I can just imagine how run down and bad you feel. Please find someone to help advocate for you if you are to weak to push them to help you.
TE Marie
Last edited by TE Marie
TE MarieTE MarieMember
P.S. I know this is lame but I take a probiotic specifically to fight c.diff. It is Saccharomyces Boulardii+MOS by Jarrow Formulas. I order it from LuckyVitamin.com and refrigerate it when I get it to prolong it's life. It doesn't have to be refrigerated but says it will extend it's shelf life, probiotics like the cold. You can get any s.boulardii product, that is just the one I found and have been using. I have not gotten c.diff back since I started taking it after my last time. It's just a suggestion. I don't know if you can take it with your antibiotics or not, you should ask your doctor. I take VSL#3DS probiotic too but the s.boulardii is specifically to fight off c.diff infections.
TE Marie
BENNO__64BENNO__64Member
Hi Lindsay, I hope the C.Diff infection passes through your digestive system soon.
Also could you please tell me about Pouchitis, and if it will affect me since I had a J-pouch and reversal done on 22nd Nov. 2013. My surgeons and specialists haven't told me anything about possible complications that might occur, same deal when I got my temp. ileostomy done on 16th Jan. last year too. I ended up with a blockage a week after leaving the hospital, not even with the slightest acknowledgement of what was going on, until the local hospital nurse said what was happening, luckily it only lasted a few days.

I'm 18 yrs old, btw.

(still new to this too.)
Late 2010-2013 Ulcerative Colitis (I haven't had any signs of UC since my Large Bowel was removed on 16th Jan. 2013)
Jan. 2013 Temp. Ileostomy (Due to contracting C. Diff at the hospital while on a new treatment for the UC flare-up I had from Boxing Day, 26th 2012)
Nov. 2013 J-pouch and Reversal
BENNO__64
R Rebe0505Member
benno 64 there is plenty of information on this site to tell you about pouchitis and pretty much everything else

fyi nobody told me anything about complications when i went for surgery..i just thought ok ii have a 94 per cent chance it will all be good..i will be free of colitus and that was that..i learned the hard way because i did in deed not necessarily fall into the 94 percent..

but most people after initial healing which can be hairy for a while do very well and do not have pouchitis problems and if they do have a bout of it usually a 10 day treatment of antibiotics work..they aren`t going to tell you all about the various things that can happen because there are many as with any major operation...
R

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