My experience with FMT

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Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 3/9/2018 12:45 PM (GMT -6)   
They gave me prepared samples that were frozen. They are already in a liquified state with saline added, I just thaw them out in the fridge overnight and then administer the next day.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

MariaMaria
Regular Member


Date Joined Aug 2014
Total Posts : 69
   Posted 3/9/2018 11:31 PM (GMT -6)   
Hey Connor, is this a placebo control trail?
As Limey said, the McMaster study in Hamilton has isolated one superior donor that has a high cure rate. They started out placebo control but now they're primarily using this one donor because people seem to be responding best. They're actively studying this donor's stool to try and figure out what makes it so beneficial, but for now all they know is whatever this donor's got it's working.
In your case, there are so many variables you're not privy to, it's really difficult to draw conclusions. Perhaps it will just take some more time. I really hope it starts working for you soon.

I'm still doing FMT on my own and seeing good results. I've had some ups and downs but the fact that I've seen some improvement tells me it's doing something. FMT can work.. praying that information on the how's and why's comes to us soon.

MariaMaria
Regular Member


Date Joined Aug 2014
Total Posts : 69
   Posted 3/9/2018 11:37 PM (GMT -6)   
FYI - My information comes from speaking with the doctors at McMaster - I am not involved in the study as my condition was decidedly too mild and easily controlled by low level medications to participate. My goal in doing FMT on my own is to lower my medication dosage, my doctors don't see this as a necessary goal hence why I've taken it on myself.

Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 3/10/2018 3:15 AM (GMT -6)   
No it's not a placebo trial. Everyone gets the FMT, as far as I know.

There are just some UC patients who don't respond well to FMT. I spoke to a functional medicine MD today who herself has UC and she said FMT didn't work for her either. She tried 3 different donors.

My UC is just so damn recalcitrant.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

limey
Regular Member


Date Joined Sep 2016
Total Posts : 62
   Posted 3/10/2018 10:12 AM (GMT -6)   
Just a follow up regarding my FMT at Macmaster I am now taking my sessions every two weeks but for me a slight problem has started to show up .

On both the last two sessions which I get around 12pm on a Monday when I get home I found that I have been running a slight fever with my temp going up to about 38.5c.
For this I take a couple of extra strength Tylenol but it is usually way into the evening before my temp came back down.

Of course along with this I get the shivers and shakes.
I spoke with the leader of the study at Mac and he has no experience of this at Mac.
Interesting to see how this Mondays session goes

Connor77
Veteran Member


Date Joined Jul 2016
Total Posts : 523
   Posted 3/10/2018 1:38 PM (GMT -6)   
I have decided to contact my trial coordinator and withdraw from the FMT. My body just doesn't like it.

On to the next thing I guess.

Bloom93
Regular Member


Date Joined May 2012
Total Posts : 302
   Posted 3/11/2018 6:46 PM (GMT -6)   
@Limey- DD had the same slight fever and chills during evenings after the Home Ft’s. For that reason she got admitted and the GI did all possible test assuming could be an infection or mega colon. All test came back negative. And an endoscopy done during the hospital stay showed the colon inflammation down to 5 or 3 ( cannot recollect fully)from 7 at the initial colonoscopy.

I hope the same with your situation ..
Daughter 24yrs- UC Pan colitis.-In Remission achieved by 5 home fecal transplant in 2011.
Diagnosed in May 2011
SCD diet (2011-2013)
Occasional sugar , milk and outside foods(2013- 2014)
Normal diet - 2015
5 Home fecal transplants for C.diff in dec 2011.

Connor77
Veteran Member


Date Joined Jul 2016
Total Posts : 523
   Posted 3/11/2018 11:16 PM (GMT -6)   
There's no reason to get a fever and chills unless there's a pathogen in the stool. I really question their screening process sometimes. My GI doctor and infectious disease specialist all used the most crappy stool testing methods to look for infections. Meanwhile the private labs in the USA found most of my previous infections.

If they are using the same testing methods in the FMT procedures that they do to look for infections in the public, then the FMTs are high risk.

There's also some other factor about FMT that can make it incompatible. I'm having trouble figuring out what that might be.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

nolafamily
New Member


Date Joined Feb 2016
Total Posts : 2
   Posted 3/15/2018 10:22 AM (GMT -6)   
Conner77 - This might be redundant, but did you consider the Herxheimer Reaction when evaluating your reaction to the FMT?
Family of a 20 year old diagnosed with Ulcerative Colitis in Fall 2015. Tried uceris, lialda, remicade, & canasa. Entyvio every 4 weeks with imuran since June ’17. Still no remission.
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