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Had my FT consultation

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Ulcerative Colitis
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Posted 11/15/2012 7:43 PM (GMT 0)
Went to McMaster University Hospital yesterday.  I've been approved to start the FT trial in January.   They would have started me rightaway but there is still remicade in my system.  They seem to be a great team of people and are headed by the guy I met with.  This guy is an Englishman who's been in Canada for the past eight years.  Paul Moayyedi.  After checking him out online I have to say that I feel already that I could not be in better hands.   This guy has more letters behind his name than the mailman has in his sack.    Great credentials!

Just google his name and you'll see what I mean...

Posted 11/15/2012 7:58 PM (GMT 0)
Good luck!

I had the trial in my bookmarks: clinicaltrials.gov/ct2/show/NCT01545908

I think I asked this before, but are they requiring each participant to produce their own healthy donor? Or, are they providing the healthy donors?
Posted 11/15/2012 8:34 PM (GMT 0)
Thanks DB.  The (anonymous) donors are vetted and supplied by the University.

Here is some more info: (copy of email prior to meeting)

Hi *****

I will gladly answer any questions you may have. 1) We have started the study and will continue for the next 2 years.

2) Myself and Dr. Moayyedi are blinded as to what the patient will be receiving.  Once baseline procedures are done and you qualify for the study, you will be randomized to the same treatment for 6 weeks, after your 6th treatment patients will undergo another flex sig to look at the healing of your bowel. If there has been no change, the code is broken to see what treatment you were assigned to. If you were assigned to the placebo, you would then be re- randomized to the active treatment for 6 weeks.

We will explain in more detail when I see you on Nov 14th    

I can also answer any other questions you may have.

Looking forward to meeting you

*******

 

I'll keep everyone posted with info.     I'm wondering if this same trial is being conducted in the US. It wouldn't be too far for folks in Western New York state to travel.  Dr. Moayyedi said that his trial is 'randomized' at the request (insistance) of the Canadian Health Ministry. 

Posted 11/15/2012 8:50 PM (GMT 0)
are you in canada? I wanna get in trials also...
Posted 11/16/2012 2:32 AM (GMT 0)
That's so awesome!  I wish you the best of luck, and yes, do please keep us posted how it goes.

I contacted them a few weeks ago volunteering myself for the trial.  They very politely told me they couldn't accept folks in the US .  Rats.  If a US trial appears for fecal transplant for adults (I saw the one in Michigan, I think, for youth), I am sure they could get plenty of interested folks to be guinea pigs!

Posted 11/16/2012 3:29 AM (GMT 0)
How are your symptoms? I love that trials are happening for FT. I hope you have great results.
Posted 11/16/2012 3:35 AM (GMT 0)
Darn Remicade.

Mackster...can't explain how impressed I am with this. GOOD LUCK!!!!!!
Posted 1/31/2013 1:34 AM (GMT 0)
Hi Mackster. I tried to get into the same study but never heard back from the coordinator so went ahead and did it at home. Have you done the trial yet?
Posted 1/31/2013 6:19 AM (GMT 0)
I'm sure like me, everyone here is hoping for great success for you,
And eventually us.
Posted 1/31/2013 6:38 AM (GMT 0)
Just be careful with the FTs. Its 2 weeks post-FT for me and my stools are either D or very loose. I haven't had a solid BM for around 1.5 weeks now (strangely I had very nice solid BMs 2 days after FTs, but since then, I've only had D or loose stools). I also have quite a lot of gurgling, some increase in flatulence, abdominal noises and mild urgency.

Not trying to scare anyone but I wish I was more aware of the 'side effects' of FTs. The nurse at the CDD says my symptoms are all part of the natural recovery from an FT but I can't remember anyone having symptoms last this long post-FT. As I told my parents (who were discussing with me whether I should do the FTs or not), I've only read 1 or 2 cases where someone has gotten worse from the procedure (though they've recovered)... one being bananagirl I think. The procedure either works or has no effect. So far, for me, it has made me worse with the D and loose stools. I am praying that a recover soon...
Posted 1/31/2013 6:55 AM (GMT 0)
Maxmillian have the ruled out Crohns for you?
Posted 1/31/2013 7:02 AM (GMT 0)
No. Don't think my loose stools are Crohns though because they only started after the FMTs, I had untreated ulcers in the TI before in July without any issues.
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