Ok I decided I'm going underground with the blessing of my GI but it will have to wait for 3 weeks as my son is my best donor option. So I'm going to research the hell out of it and make sure he gets the right stool test? I think Ill have my hubby as a backup and get him tested as well. I'm running out of options and if I lose this pouch well then I have tried everything? I will let everyone know when I start. I'm just angry that there is no medical facility to have this done in when their r GI doctors whom believe in it and people have to do this without being under medical care. I wish I was rich and I'd go to Australia to Dr Brody's clinic.
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You don't have to go to Australia, as there are clinics in the U.S. Right now, it is mostly only used for treatment of C. diff, but some are applying for approval for use in UC. Here is one in Portland, Oregon, and they assist with home fecal transplant and distance consultation:
http://fecalmicrobiotatranspla...on.com/FMT/home.html
But, home fecal transplants are becoming more of a viable alternative:
http://thepowerofpoop.com/medi...me-fecal-transplant/
Good luck and let us know how it turns out!
Jan
http://fecalmicrobiotatranspla...on.com/FMT/home.html
But, home fecal transplants are becoming more of a viable alternative:
http://thepowerofpoop.com/medi...me-fecal-transplant/
Good luck and let us know how it turns out!
Jan
There is a clinical trial going on right now for fecal transplants in Chron's patients.
Otherwise the best guy to go to is in the Bronx at Einstein Uni. I can get the name, I have it somewhere. Shen gave me his info months back. They have trials for C.diff going on or you can get it done in his office if self pay.
Otherwise the best guy to go to is in the Bronx at Einstein Uni. I can get the name, I have it somewhere. Shen gave me his info months back. They have trials for C.diff going on or you can get it done in his office if self pay.
Cornel my hospital, is applying, they only do for c diff as the one in the Bronx. I asked if there was a hospital but others too are only approved for c diff. I'll look at Portland but that too is quite far. And then of course! will my insurance cover this? Ugg, I'm still paying out of pocket for these meds having not met my deductible yet.
Ps thank you Jan
Thank you both! I see that Oregon is also applying.
Insurance doesn't cover it and it costs about 2k for the testing and doctor give or take. Depends on the doctor you use. There is a man in Tampa Florida that is treating IBDers with fecal transplant.
This is the full list global as well as info for the Chron's trial, he is on there in Tampa area
http://thefecaltransplantfoundation.org/?page_id=38
This is the full list global as well as info for the Chron's trial, he is on there in Tampa area
http://thefecaltransplantfoundation.org/?page_id=38
Thank you I am going to show this list to my GI but I have UC and a pouch Not sure if I will qualify? Home administer is looking better every day.
Easy to do at home. Hopkins told me how to do it. a nurse there with a rectum did it herself with her husband's poop in an enema.
Good Luck!
How do u do it? Did u have your donor tested? How much of a enema solution would u need for a pouch? I'm ready! I read you have to do it at meat 5 days in a row. I might need 2 donors like my son and hubby. And how long do u hold it? With a pouch that worries me especially since I read it has to be fresh and my poppers usually go in the am! ugg! this could be a problem.
Use a regular enema bottle and half poop half water and shake up insert and hold. She had a colon so might be easier to hold in. Testing you can request on your own and I think it is about 900 dollars. It is not recommended to do without testing. I almost did it without since I was at the end of my rope.
Vanessa, did u do it?
Fecal transplant is approved at Cleveland Clinic in Ohio and Florida for pouchitis. By now, probably other places.
Cornell NYC has not gotten approval yet as of 2 weeks ago. But good to know hospitals r getting it.
No I never did. I don't have IBD and haven't had c,diff again so not sure it would be worth it since nothing is wrong with me atm.
Ally Kat
Thanks for your post. I am in dire need of a fecal implant and have spent a lot of time researching. It not not be done by a medical facility unless you have diff or crohns and my crohns is not conclusive. There are two books on how to do on your own and a md in FL who will help with phone consults. I am out of the country now and not in front of my notes but will get back to you. Can you pm me and I will get you all the info after the 8th of January when I return. We should talk. Dr Shen said my pouchitis wouldn't qualify me at CC. But I will ask again when I am there end of January.
Thanks for your post. I am in dire need of a fecal implant and have spent a lot of time researching. It not not be done by a medical facility unless you have diff or crohns and my crohns is not conclusive. There are two books on how to do on your own and a md in FL who will help with phone consults. I am out of the country now and not in front of my notes but will get back to you. Can you pm me and I will get you all the info after the 8th of January when I return. We should talk. Dr Shen said my pouchitis wouldn't qualify me at CC. But I will ask again when I am there end of January.
Dr. Lawrence Brandt at Einstein in the Bronx.
quote:Dr. Lawrence Brandt at Einstein
Shen recommends him. Says he is the only one that holds the authorization.
I did a lot of research on fecal implants since Shen told me I had SIBO but he also told me Cleveland Clinic couldn't do one for me with my pouchitis and last week when I saw him said it probably wouldn't help much. I didn't ask why as I was still a bit drugged up from my balloon dilatation. I have tried every source in the USA I could find and found none that would do it for me. The MD at Einstein Hospital in NY, Dr Brandt won't return and emails when I ask about doing one for me. After hearing from Dr Shen it might not be as helpful i might not pursue as aggressively.
For those who are interested. the two web sites devoted to the subject are www.thepowerofpoop.com and www.fecaltransplant.org
For those who are interested. the two web sites devoted to the subject are www.thepowerofpoop.com and www.fecaltransplant.org
That's because the FDA put a stop to them Cornell is in the process of applying. I don't know how long it will take? I got a book on how to do it yourself but so far I've been in a miracle remission since Dec.
who at Cornell would do it if approved? thank you.
There is a doctor at Cornell who is doing it for C Diff. My GI told me his name but I don't remember. You can call the Jill Roberts IBD center and they will tell you.
Check with Dr. Crawford at Cornell and Cleveland Clinic is definitely approved for it.
Approved for anything other than c- diff?
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