If you still have a colon HPI/Fecal Transplants might be worth a shot. They are having some success over at the healing well UC forums. If you are desperate to save your colon and have a clean donor,look into this,do your research. I have not posted about this in years, but now it sort of a mainstream alternative for UC,which you can do at home.

Mike

http://www.healingwell.com/com....aspx?f=38&m=2100072

http://www.healingwell.com/com....aspx?f=38&m=2325896

This message has been edited. Last edited by: Old Mike,Glenns Dad,

I think it is awful that this procedure has to be done "underground" so to speak as unless you have c-diff unresponsive to meds the GI's will not even consider it. I asked about this for my son BTW and to tell you the truth I would try it for my pouchtis. The thought of doing it at home is kind of creepy.

Allycat, Are you near Rochester NY? If so and you are interested, I know of a GI who will perform FT by colonoscopy for UC. Please PM me.

When my daughter was diagnosed over two years ago, no GI would do this for UC, only abx resistant C Diff. Now, they're starting to do it across the country. In another couple of years, it will be an accepted treatment, of that I have no doubt. Shame it's taken so long and I hope Dr Borody gets a Nobel or something for this.

Much less creepy than UC. Put it in a jar, get on some gloves,mix with some water,suck it up into an enema, and shoot.
I suspect the GI community would rather wait for a pill that is FDA approved. Anyhow for cuffitis and pouchitis might work, not sure if anyone has ever tried it for that. Also might be a bit dangerous pushing too much bacteria into your small intestine. The fact that it does work, should lead the research docs down the right path, but I think many refuse to believe.
Mike

Good grief Mike it is so good to see you again. How are you doing? I've been a bit of a stranger here too but I think it is time to get back into things here.

I suspect that most any therapy departing from the corporate pharmaceutical model will have a difficult time seeing the light of day. Much the same complaint can be made relative to the therapeutic use of probiotics, which is similar to a fecal transplant but sans feces. Hopefully it is just a matter of time until each is taken more seriously.

By the way, I live near Rochester, NY and never heard of a GI doing fecal transplants. My GI certainly didn't mention it. This makes me think the person doing them may be something of a pariah even within his immediate community of peers.

Oh well. Colon is gone, must move on.

Tin Can,
I don't think he advertises it. He did it at the request of a patient last year. It was successful, as a result, he a has done a few more and will continue because it has been surprisingly effective. I know people have traveled across the country to see him. There are others starting to do this too.

I was reading about this last night when I was extremely tired, so don't know if I picked this up correctly.

Some of us may have been misdiagnosed and actually have undiagnosed crohns, which is why we still have so much trouble.

I thought I read this works for crohns as well, which can be anywhere in the digestive tract, so maybe it'd work for a pouch. I also think I read that it treats ankylosing spondylitis as well.

Which of us is going to try it first? "I'm not going to try it, you try it!"..lol

-Roni*

Sorry, it didn't say it treated ankylosing spondylitis, it was sclerosing cholantitis.

-Roni*

Roni, you would think it would work for pouchitis......a small bowel ailment. If doctors are inserting fecal matter directly into the stomache via a NG tube, that means it is going from stomache, to small, to large bowel. If it was meant just for large bowel, wouldn't doctors just simply transplant the fecal matter via a scope (through the rear-end) up to the start of the large bowel? I have a new baby in the family & I am so tempted to try this at home for pouchitis! I am on Humira with cipro every now & then. I have had pouchitis since my takedown in 1993. I have come close a couple times to throwing in the towel & going back to an ileostomy. I would certainly try fecal transplant before I consider having my pouch removed.

I actually brought this up to both my GI and my surgeon. My GI completely blew this off as quack stuff, even though he admitted it is legal to do for c.diff infections. My surgeon, however, actually held a civil conversation with me about the pros and cons to it.

The one thing that convinced me not to try it was that it is performed basically as a colonoscopy. If you've had UC for a long time, your colon is much more delicate and prone to perforations. So, stool + perforation = serious medical issue.

If I'd been at the beginning of my UC career when I'd heard about it, I might have gone out of country to try it. As it is, I opted for the surgery.

I have the name of the GI in Rochester but I believe because of insurance reasons he is no longer doing it.

Roni, I am one of those who was mis-diagnosed and actually has crohn's. Hence the continued problems.

Haven't read too in depth yet about fecal transplants for IBD but I have read a lot about it's use for C Diff. Interesting to see how well it can help and for who in the IBD community.

-Sara

Allycat,
I believe he is actually still doing it. I know a patient of his who had success with this procedure and she told me recently that he is working with someone new and has done a few recently. I can put you in touch with her (she's a friend of his) if you are interested. worth a shot.

J.T., On the Healingwell board, there's someone else trying it with a new baby. They were thinking the baby may not have all the bacteria we'd be looking for. If you do it, let us know how it turns out.

Sara, So sorry about the crohns diagnosis. I'm pretty sure I was misdiagnosed as well, but since I'm not willing to take anymore meds, I'm not pushing to get a proper diagnosis. Always looking for an alternative treatment though. In the meantime I follow SCD as closely as possible, which for me, goes a long way in controlling pain and bleeding. If you ever decide to try FT, let us know how it works out.

Hang in there guys! "And remember..We're all in this together." (.. from the Red Green Show)

-Roni*