FMT did NOT work to clear C. diff, even after trying 2 donor

If you have had or are considering an FMT please share your experiences here.
Macy88
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FMT did NOT work to clear C. diff, even after trying 2 donor

Postby Macy88 » Fri Nov 20, 2015 2:43 pm

Hey guys! I have a bit of a strange story that has left me feeling pretty helpless. More than 2 years ago I had C Diff & I managed to kick it with an FMT. I caught it again in July on a separate instance, and this time I can not get the FMT to work. In fact, I used my original donor and I did about 15 FMT's with their samples. It did not feel good to do, as in afterwards I was still in cramps and pain. I didn't get the instant relief that I did 2 years ago. I eventually found a second donor thinking that it was just an issue with that. However, even with the second donor and doing 7 FMT's it's STILL not gone. I am still testing positive for C. diff. An interesting note is that after I do the FMT, about 24 hours after I get horrible stomach cramps and pain, and it's always quite painful. It feels like there is a war going on in my colon, but yet nothing is working somehow.
Does anyone have any tips or any hope to share? I can not seem to understand what I might be doing wrong, or why this isn't working?
Thanks!

NanciT
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby NanciT » Fri Nov 20, 2015 5:36 pm

It's not clear if you are doing this yourself? Have you been followed by a GI? I did not have the FMT but was all set to. My donor had to go through several tests. Were they tested?

Have you been treated with medications?

Sorry for all the questions but it's difficult to figure out by the information.

NikaNik
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby NikaNik » Fri Nov 20, 2015 5:48 pm

Hi, Macy,

So sorry you are dealing with c diff. Have you tried a colonoscopy FMT by a doctor? It has more than a 90 percent success rate (about 98 percent of it is needed a second time). Bowel prep is used before hand and tested donor stool is spread out throughout the colon in areas an enema doesn't reach. That may be an option for you. There are also now FMT capsule pills.

Hang in there. This is a great place for support!

Blessings,
Nikki

Macy88
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby Macy88 » Fri Nov 20, 2015 5:52 pm

Hi there! So yes I am doing this on my own but under a doctors supervision. The donors had extensive testing, both blood & stool. They are young, very healthy & have dependable bowel movements on schedule daily. Haven't been on any antibiotics in over a year, are on no prescription meds at all either. They really are the perfect candidates for FMT! Like I mentioned I used the first doner about 2 years ago with quick success.

I was treated with high doses of Florastor and probiotics both times. Neither times did I use antibiotics (neither 2 years ago or now). The reason for that is because I have a chronic illness and do not tolerate vanco or flagyl at all. I get severe side effects that make them not an option unfortunately. I'm just at such a loss as to why this isn't sticking! It shouldn't be this hard.

Macy88
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby Macy88 » Fri Nov 20, 2015 5:55 pm

NikaNik wrote:
> Hi, Macy,
>
> So sorry you are dealing with c diff. Have you tried a colonoscopy FMT by a
> doctor? It has more than a 90 percent success rate (about 98 percent of it
> is needed a second time). Bowel prep is used before hand and tested donor
> stool is spread out throughout the colon in areas an enema doesn't reach.
> That may be an option for you. There are also now FMT capsule pills.
>
> Hang in there. This is a great place for support!
>
> Blessings,
> Nikki


Hi Nikki! Thank you for the encouragement I appreciate it more than you know! I am unsure if my insurance would cover the FMT with colonoscopy since I have not technically taken vanco or flagyl which is usually required first before they approve it (it's so strict)! That's why I went for the at home approach in the first place. I've read about the capsules, that might be an option! Thank you again for your advice

NikaNik
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby NikaNik » Fri Nov 20, 2015 6:34 pm

Sure thing! I've heard they usually bill it as a colonoscopy. Dificid is also an option to take rather than Flagyl or Vanco. I felt great on the Dificid. : )

beth22
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby beth22 » Sat Nov 21, 2015 2:26 am

You really need to take an antibiotic for at least 4 or 5 days before doing FMT according to all the protocols, to beat down the c diff. Maybe you would tolerate Dificid. If not, perhaps taking Pepto Bismol every day for a few weeks may work. Pepto Bismol alone cleared me of c diff when I had it low grade. Have you been tested for any other pathogens besides c diff? Sometimes when you have something else, it can hinder the c diff from going away as well. That is what I was told by my GI.

roy
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby roy » Sat Nov 21, 2015 5:13 am

Are you doing this ONLY because you have a positive test result?
I cant imagine being able to do FMT while you have active c.diff D.
If its because of the test and not symptoms you might be causing a lot of harm.

FMT only seeds the gut with a tiny amount of bacteria.
That bacteria can not grow and populate the colon if it already has a full compliment of gut flora.
The antibiotic course before FMT is done to kill active c.diff and some other bacteria to create a void for the donated bacteria to latch onto and multiply, it can then mop up the c.diff spores as nature intended it to do.
If you do not clear the active infection before FMT then the new bacteria would just be overwhelmed by the old.
If your trying to clear asymptomatic c.diff you might have to accept your colonised and that c.diff CAN BE PART OF NORMAL FLORA and cause no disease.

Macy88
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Re: FMT did NOT work to clear C. diff, even after trying 2 d

Postby Macy88 » Sat Nov 21, 2015 3:32 pm

Hi Roy! I am symptomatic, I have diarrhea/loose stools and cramps. I also had a fever along with it in the beginning. So I am treating it to get rid of an active infection.
I haven't tolerate the usual c diff meds which is why I tried to supplement with some florastor first.


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