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Help getting FMT!!

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Ulcerative Colitis
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Posted 4/18/2015 3:51 PM (GMT 0)
Hi All,

i'm in Toronto, ON Canada and am looking for a doctor to give me FMT's. My GI has exhausted all his contacts in Canada is willing to speak with any GI who will prescribe this for UC. It seems doc's here will only do it for C-diff (and that too is rare).

I'm willing to travel outside of Ontario and even Canada.

Please let me know.

Thank you.
Posted 4/18/2015 4:34 PM (GMT 0)
Try phoning the GI department at McMaster University Hospital. They seem to have had some research trials in the past. Perhaps they have some more upcoming. Or maybe look on their website and email some of the GI doctors directly and explain the issue. So sort of mass market yourself lol.
Posted 4/18/2015 4:42 PM (GMT 0)

Canada Mark said...
Try phoning the GI department at McMaster University Hospital. They seem to have had some research trials in the past. Perhaps they have some more upcoming. Or maybe look on their website and email some of the GI doctors directly and explain the issue. So sort of mass market yourself lol.

Im certain almost none of them will do it at Mac. They werent impressed with the trials in the first place, and FMT hasnt been approved in Canada yet. I know this because Im in a clinical trial there, some of them are my profs, and Ive shadowed some of them in the past. Cant hurt to try, but dont get your hopes up
Posted 4/18/2015 5:04 PM (GMT 0)
My GI tried there. No go. They stopped the trials at Mac because the trials weren't successful and some patients were getting sick.

My GI's tried all of the "obvious" contacts at Sunnybrook, Kingston, Vancouver etc etc

I'm really looking at outside of Canada.
Thanks guys...after the last 12 years I'm at the end of my rope. I have no life whatsoever and can't survive on disability and feel worthless that I'm on it. It's fmt's or enytvio. Likely surgery in the winter but I'm not hopeful that will work:(
Posted 4/18/2015 5:33 PM (GMT 0)
It's only approved in the US for c diff too. I think there may be some trials you could look at /clinicaltrials.gov/. I am not sure if a non-US resident could be in a trial here. I know in Australia there is a clinic that does it. You could also always do it yourself with enemas... The problem I've heard, is that FT doesn't always make UC better, it can make it worse. If I was doing badly, I wouldn't worry as much about that risk.
Posted 4/18/2015 6:16 PM (GMT 0)
Email these two specifically:

fhs.mcmaster.ca/pathology/contact_us/faculty/faculty_bios/lee_c.html

farncombe.mcmaster.ca/surette_michael.html


Explain your situation. Yours is slightly different than most. Be very detailed and I think you might find some help - or direction.

Also, there will be more at Mac eventually.
Posted 4/18/2015 7:47 PM (GMT 0)
NotSo...thank you. My GI would send me to Australia to get it. I'll check there.
I have no donor. None. Otherwise I'd do it myself in a heartbeat.

Thanks Canada Mark I'll try it. Don't really have time for "eventually." I've been in an unending 16 month flare and life is passing me by and the complication of PG (again) has added to my frustration.
I'll send an email for sure. You haven't steered me wrong. The WOO worked for my abscess. Perhaps you're my good luck charm!
Posted 4/18/2015 8:10 PM (GMT 0)
I don't think you need any type of referral to go to the people in AU. You just pay and go :)

thepowerofpoop.com/epatients/where-to-get-fecal-transplant/

They are probably the most reputable.

I don't know about the others on that list but the Bright clinic used to advertise here a lot (unwanted). I don't trust them, firstly because they are spammers, but secondly because they are not MDs. It makes me question that list. How many on there are not MDs? If i am not getting it done by an MD, i will find a donor and do it myself. Why pay 1000s to be monitored by someone who isn't trained in medicine?
Posted 4/18/2015 8:15 PM (GMT 0)
Notso...I tried that website...didn't get a response from most docs listed. If you don't trust the Bright Clinic, I won't either!

My GI will write to Health Canada to get the funding to get it out of Province/Country. However, I've buying lotto tickets as well.

Appreciate the help!
Posted 4/18/2015 10:14 PM (GMT 0)
You could try the Taymount clinic in the UK. They seem to have a well defined protocol for using FMT on UC and they even do it using anaerobic conditions. Problem is they charge an arm and a leg for it, but if you can afford it, maybe it could be your solution.
Posted 4/19/2015 1:34 AM (GMT 0)

Canada Mark said...
Email these two specifically:

fhs.mcmaster.ca/pathology/contact_us/faculty/faculty_bios/lee_c.html

farncombe.mcmaster.ca/surette_michael.html


Explain your situation. Yours is slightly different than most. Be very detailed and I think you might find some help - or direction.

Also, there will be more at Mac eventually.

Surette is one of my profs and we talked at length this year about FMT. He is totally against them right now because there is not enough evidence to support their efficacy. Emailing him will be a waste of time. Not to mention he is only a microbiologist, not an MD
Posted 4/19/2015 10:54 AM (GMT 0)
if i were to do ft, i'd definitely do it in Argentina at dr Silvio Najt's clinic
Posted 4/19/2015 1:04 PM (GMT 0)
Maurader has nothing to do with that.

He is a microbiologist - these are exactly whom you want to contact when looking specifically for this. They will be doing faecal bacteria analysis for upcoming studies. They will know before most of upcoming clinical cases as they will be part of the team.

-------------

rabartolo,

Have you tried here yet? - www.cdd.com.au they have a current study for UC, info is at this link www.cdd.com.au/pages/research/current_studies.html

Contact them right away if you have not.

Locally:

www.uoguelph.ca/mcb/ - Try here as well. They just finished a few studies but the focus was on c-diff. They do however have the intention to try for IBD soon. They did a small "pilot" study with one of the GI's at Mac.

If you have patience and time there will be some more local ones come up. Round one has finished at Mac, and UofG had some success in terms of c-diff. So now they will make some changes and begin planning round two approaches. I'd say within 6-12 months chances are good some of the local or and Canada wide will launch recruitment for some new faecal transplant studies. Problem is really meting eligibility criteria.
Posted 4/19/2015 1:32 PM (GMT 0)
As well this is "the one" to keep an eye out for the results specific to Ulcerative Colitis:

/www.clinicaltrials.gov/ct2/show/study/NCT01790061#contacts


The difference being is these were done mid gut via tube, whereas all the other local studies around here were via "up the butt" with limited but none the less some success. There has been some other small mid-gut studies for Crohn's that have had remarkable success.

Would be very much worth your time to write to these as well and see if you can get some preliminary "off the cuff" results and find out if they have some planned follow up studies.
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