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I wrote a long blog post about this (see my signature for link). People with FAP rarely get pouchitis. I was told all year long that my issues MUST have been pouchitis and the surgeon that kept scoping me said I had NO pouchitis. So I finally had Shen scope me at Cleveland Clinic and he said not only did I not have pouchitis I NEVER had it. What I did and do have is C.diff. From being on non stop rotation of Omniceff and Cipro I had C.diff.

I had no clue that antibiotics would make my life worse. I had no idea what C.diff even was. So if you ever have a lot of symptoms of gas, runny stool, pain (my pouch felt like a bowling ball was inside me) and other pouchitis/blockage symptoms. Make sure doctors test for C.diff. Sad a whole year went by and I just got worse to the point I almost booked surgery to remove my pouch.
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I hear ya, Vanessa! C. diff is my number one concern with Cipro and have said many, many times here, that was why I preferred Flagyl as my go-to antibiotic, even though it gives me a funny taste. If it didn't work, that would be another story. Plus, it is waaaaay cheaper than Cipro (but that is a lesser concern). I'm not even sure about Xifaxan, even though it is not systemic, it is the gut flora I am concerned about. But, I think I remember it was OK. But tLk about spendy!

Jan Smiler
The annoying part is everyone said "Oh you have no colon, that isn't really going to be possible". Shen said differently at CC. He has seen C.diff form in just the valve or a cuff.

I just had an upper scope since I have to monitor my disease and I informed the HEAD of Gastro at Georgetown I had C.diff. He said that is really uncommon and brushed it off. Then he asked why I went all the way to Cleveland Clinic. I wanted to answer with, "I called you 5 damn times and nobody helped me with my issues". I had the worst scope experience even though I am clear of polyps.

Then he told me I need to take Zantac for my gastritis issues but I was told antacids were just as bad as taking antibiotics when you have had or have C.diff.

Doctors frustrate me.
well i hope shen gave you the antibiotic they use to rid of c-diff and told you to test about a month later..i had a case of c-diff when i had colitus and a few with pouch..each time with pouch i got appropriate drug and it was resolved..i am surprised and so happy your story has a good end because unattended c-diff can be life threatening..when caught earlier it is easily remedied so no need for anyone to be terrified of it..whenever i have unusual occurrance shen says test for c-diff..its easy enough to do with my local dr.but shen does recommend a certain type test he says is more accurate..un fortunely i do not remember its name..i just ask him..

as a perventative for cdiff since i had a few bouts of it i take two recommended things ..saccharomyces boulardi and culturelle (lactosbasillas gg) i have not had any reoccurrance in over three years since i have been on them..and its my understanding once you have had it you are more suceptible in future..however,as i said i am not fearful of it now..
Yes once you have it you can get it easily. I can't take certain antibiotics or antacids anymore. I got Florastar since that has Saccharomyces Boulardi in it but probiotics don't agree with me. My guts are weird, once I put probiotics in my pouch just can't take it. I try over and over.

I just retested yesterday after being on Vanco for 2 weeks. I still have a lot of the symptoms so we shall see. I am not scared of it being life threatening I just can't stand the pain and everything else associated with it.

The C.diff test is PCR testing.
They are going to start doing fecal transplants soonish where I work (its coming, we're not quite there). Sounds gross, but honestly, if my treatment was months of abx therapy or a stool sample from my healthy husband, done up in the lab and given to me to cure C Diff, I'm going transplant. It has a 90%+ cure rate, 3x better than abx. They think the indiscriminate abx I got in the 70's for "strep throat" every time I had a sore throat was a possible trigger for my ulcerative colitis (though it'll never be proven). I prefer to stay off abx unless absolutely necessary.
I am a huge advocate of fecal transplants for C Dif. If I had C Dif, that's the first thing I would try for sure. Although I have no personal experience with them, I have read impressive things about transplants, have heard about successes anecdotally, and believe that they make pretty darn good sense. Something to consider. . . .

Good luck!
Unfortunately I think most insurance companies would call fecal transplants experimental or at least want less expensive things tried first. I don't think it is as simple as inserting someone else's excrement in your pouch. I have no idea where I read this but I thought they had to test the donor's poop first. It sounds like you know more than I do Vanessa. Is it this simple?
My c.diff is back. I know. I have blood coming out, extreme valve pain and super spasmatic pouch with gas. All the symptoms I had before. Flagyl and Vanco are now not working. I asked my husband to poop in a cup. I am desperate and just really at the end of my rope with the pain and symptoms.

Feel like doctors just don't do enough lately for me. Hate that feeling.
Vanessavy,

I am very sad to hear that you have C-Dif again. Sounds like you are on the right track by pursuing fecal transplant. I have heard practically miraculous things about that method, including from people who have actually done it. I've also heard that it might take some research to find someone in your area willing to do the transplant (or implant, as my GI likes to call it). Perhaps you could do a shout-out on this site to see if anyone knows a good doc willing to do the procedure?

I hope things clear up for you soon. You make such an effort to be helpful to others and I wish I had something useful to share with you.

Please keep us posted on your progress. Hang in there.

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