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HI all, 

If restoring the fecal stream is the main way to treat diversion colitis (with diverted Jpouches) - I am wondering why we've have never seen any discussion about doing fecal enemas to nourish the lining of the diverted pouch. It seems to me that would make sense as a potential treatment? Has anyone heard of that? 

It seems that the main treatments  - fatty acid enemas, and sulfasalazine enemas are not successful - but they wouldn't offer any restoration of the good bacteria - so maybe that's why they don't work so well?

I am still trying to avoid having my jpouch fully removed - its been diverted for 5 years now - and the inflammations is causing grief. So i am actually tempted to do experiment with my own enemas using waste from my ileo..??? any thoughts..?

Here is another study showing the value of restoring good bacteria in treating colitis...https://www.ecco-ibd.eu/index....olledx00a0trial.html

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agreed interesting argument but not sure I buy into it. mostly also because FMT in and of itself while proven very effective, upwards of 90% cure rate for cDifficile infections, has NOT been broadly proven effective in IBD. is the argument that it helps rebalance intestinal flora, yes, but as it is so new we don't really know why it seems  to work for some patients. I personally know several patients who have undergone FMT treatment, one for cdiff above and beyond the jpouch, it was extremely successful for cdiff, but nothing more, her crohns returned in force later, another who ended up in the ER while following to the letter all FMT instructions while trying to treat her UC, another who as a jpoucher had a FMT as part of a trial to treat pouchitis, she ended up in the hospital shortly thereafter with a substantive flare. I realize dr borody in Australia is trying to make waves on the FMT cures IBD but I also know of one of his Aussie patients who went and while she reported mild improvement is now facing total colectomy after also subsequently trying Remicade. mixed results at best I would say, or I happen to know all the Debbie downer cases.

Dewey, I think that Saff was not talking about fecal transplant, but just using her own ileostomy output as an enema. Essentially, just restoring her own fecal stream. Diversion colitis and pouchitis are due to the lack of nutrients for the mucosa that are derived from the fecal stream. Fecal transplant is more to treat bacterial imbalance and/or infection.

Jan

Last edited by Jan Dollar

Yes that's correct Jan I was talking about using my own waste as I figured that would have less risk, but still offers some nutritional / bacterial support. But that's still interesting feedback Deweyj - yes it does seem as though there are mixed results so far with the transplants from other people. I might be being overly ambitious trying to keep this diverted pouch going.. ! I know I can handle the ileo ok, its just the surgery that is concerning me. 

Hey Allykat, Yes reconnection its definitely an option - but for me personally, I don't wish to risk multiple surgeries.. I had such a bad time with the Pouch so there's a fair chance it will be similar 2nd time around. If I'm going to do more surgery I think I'll just limit it to the one - pouch removal. I think I'm just going to gather my strength, and get off prednisone before I do it.

I'm glad entyvio worked for you..

Saff, I did the Entyvio before reconnect to make sure it was working. See my signature, I've had multiple horrible surgeries and lots of really bad side effects from meds and surgeries gone wrong. I'm a Drs nightmare.

anyway, this second takedown was the easiest thing I ever went thru. So much better than having to remove my pouch. Yes, I'm on a bio but I've learn to accept that something is missing in my genes to warrant it. This is a new drug that only targets the gut so side effects are minimal. I've never felt better. Good luck with everything. 

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