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I just had a fecal transplant for pouchitis as part of a study at University of San Francisco. The study is still open to pouchitis, UC and Crohns. It takes an initial visit with blood work and stool sample, then fed ex stool samples ongoing. The second in person appointment is the actual pouchoscopy with fecal transplant. Insurance is billed for this procedure under routine care, I believe. There is a follow up visit in person with blood work a month later. Then 6 months out, a follow up pouchoscopy.

Results:

For a week my lower part of pouch was swollen and some very painful bowel movements. This subsided and my frequency to go has been almost cut in half, sleeping through the nights, although with some cramping in the morning, but once I am up and around I feel pretty normal with very limited symptoms of pouchitis. Only time will tell if I go through flare ups or recurring pouchitis, or how long the treatment will last.

 

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My results have bottomed out, after about 3 weeks after the transplant, I had a flare up of pouchitis pretty bad. The doctor did say that initially 5 of 7 patients that underwent the transplant showed improvement, but I am not sure how long the others improvements lasted or if they continue to last. This is a very personal issue, so one man's cure is another man's passing trials and tribulation. -PB

Pouchboy

How disappointing! I know there was great hope for this line of treatment, since pouchitis seems driven by fecal flora and fauna. However, the fact that it is predominately an issue associated with IBD, the thinking is that it is an inflammatory response to the presence of normal GI bacteria (as opposed to pathogens). It just adds to the mystery (and not in a good way).

It will be interesting to see what the study results are.

Jan

Jan Dollar

I am in the same study. I had a very bad response (or happenstance a week after FMT) and was in the ER/hospital for 4 days for bowel rest for flare and/or partial bowel obstruction. Ended up going on cipro and entocourt temporarily as well as pain meds temp. Am still hopeful for results of this or other FMT in pouches/UC/crohns.

I surmise that I was too ill/run down (in the gut or otherwise) to have the transplant. Anecdotal of course.

S
Last edited by SarahXYZ

Any and all who have had a fecal transplant please keep writing.  I got my pouchat UCSF in '97 but now live in France.  Just yesterday my gastro mentioned looking into fecal implant trials here for the pouchitis which I have suffered with from day 1.  Any info you can send me on contacts in the US would be great. Hard not to get my hopes up but still, I'd try it.  Thanks for all the current info.

 

S

My pouch expert has said fecal implants are "just a strong probiotic", so before attempting one the patient may want to try other probiotics like VSL#3 to see if they at all stimulate improvement. In my case they didn't, and thereafter my pouch expert steered me away from fecal implants and towards eventual Remicade therapy which was started when his successor took over my care.

it may help others but responsiveness to other probiotics could be a clue as to how the patient responds to a fecal implant.

CTBarrister

My diverted pouch became problematic after server pouchitis. Fatty acid suppositories and VSL 3 d ememas somewhat improved it but not fully. I went on Entyvio which cleared it right up and since I'm now on it I was reconnected and my pouch so far is doing good. Do I like being on a bio drug, no, but it is better than having a sick disconnected pouch that would have to have been removed. 

AllyKat

not to get into a pissing match here, but I find it fascinating that my doc at UCSF in the same department shared with me a marginally different view of FMT.

I asked her opinion a few months ago ahead of one of my frequent dilation pouchoscopys and she opined that while FMT holds great promise for solving the cDiff problem, she is less convinced of its utility in other venues.

she expressed firm belief in the microbiome being the underlying issue in our issues, and that introducing FMT would inextricably alter the patients microbiome, and since the microbiome is still being investigated, explored and hopefully understood, do we really know what we are doing when we introduce a donors FMT to a sick patient?

an interesting viewpoint I thought.

fwiw, for years Borody in Australia has claimed that he cures IBD with FMT, I would submit that the truth is much more mixed. This includes watching an Aussie patient who is quite poorly with UC trying to undergo treatment at his facility with utter failure. granted that is a sample size of one, but it is what it is.

I would further opine if you are still reading that I am beginning to fall into the camp of call it whatever the heck you want, chronic pouchitis, crohns, etc, but personally after 8 years of relatively controlled pouchitis via Humira/methotrexate pairing, that it finally seems to be waning in treatment efficacy and so maybe indeed there's much to be said for me personally at least that biologics are a very effective treatment. this was also the case for the first 1.5 years I was on Remicade. I suspect in a few months we shall be swapping out meds to the next one in an attempt to curtail recurrent pouchitis again.

 

 

deweyj

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