Likely FMT failure anyone from Missouri?

If you have had or are considering an FMT please share your experiences here.
kanak
New User
Posts: 23
Joined: Fri Apr 21, 2017 8:32 pm

Likely FMT failure anyone from Missouri?

Postby kanak » Mon Jun 19, 2017 2:34 pm

I won't go into long details yet but it is apparent my fmt last week failed. Of course I'm now in the window after medicine that my pcr was negative. I can't keep driving 700 to mayo for continued treatment nor will the c diff specialist acknowledge this relapse, it's IBS....No treatment without a positime pcr.

So, does anyone get care and treatment in Kansas City Mo area? Any recommendations?

georgina
Long Time Contributor
Posts: 2069
Joined: Sat Sep 12, 2015 10:07 am

Re: Likely FMT failure anyone from Missouri?

Postby georgina » Tue Jun 20, 2017 12:24 am

What symptoms are you experiencing? Are you having frequent D , fever , abdominal pain?

beth22
Long Time Contributor
Posts: 9161
Joined: Tue Apr 07, 2009 2:23 pm

Re: Likely FMT failure anyone from Missouri?

Postby beth22 » Tue Jun 20, 2017 2:28 am

After FMT, I had worse symptoms than with c diff at times. I had SIBO. Make sure it is really c diff. I also got pancreatitis.

I think Bobbie may know of doctors in that area. Send her a pm and ask.

kanak
New User
Posts: 23
Joined: Fri Apr 21, 2017 8:32 pm

Re: Likely FMT failure anyone from Missouri?

Postby kanak » Tue Jun 20, 2017 7:58 am

Georgina,
This is my 4th relapse. Symptoms are the same as every time I've had c diff. Watery or mucous diarrhea especially in the morning. Overall flu feeling, nausea and vomiting, feverish feeling, brain fog. I relapse on medicines within about 48 hours and I stopped vanco on a wed before fmt and symptoms returned full force by the weekend. I have never in any of the times I've had it had 10 or more times a day but do have anywhere from 2-8. Sometimes it s just mush. I can't get out of bed. I have an hour or so in the evening when I rally. Last month I relapsed on difiCid by the last day I took it may 1. Had neg pcr may 5 at mayo, neg pcr may 16 at home and then positive pcr at Mayo on may 23. As soon as they put me back on vanco in about 36 hours symptoms resolved. 14 days of vanco (not enough) and did fmt. Here I am.

Lisa33
Long Time Contributor
Posts: 2396
Joined: Mon Sep 29, 2014 1:45 pm

Re: Likely FMT failure anyone from Missouri?

Postby Lisa33 » Tue Jun 20, 2017 10:51 am

There are two doctors listed under Missouri on the list under the "Doctors" forum. Here's the link.

viewtopic.php?f=9&t=16391

There are posters on this site who have had to do a second FMT to get cured. There are also a couple of posters, although rare, who have had a hell of a time and winded up doing the FMT bottom up and top down, which was ultimately their cure. But as the others said, you can have symptoms for some time after, so make sure that you still have c-diff and it's not something else.

So sorry that you are still feeling so ill.

Lisa

afroney
New User
Posts: 21
Joined: Fri Oct 07, 2016 4:13 pm

Re: Likely FMT failure anyone from Missouri?

Postby afroney » Wed Jun 21, 2017 3:09 pm

University of Iowa did my two FMTs. Not in your state, but a little closer than Rochester. Both FMTs failed to resolve my Cdiff. They require a positive test to proceed with FMT though...

beth22
Long Time Contributor
Posts: 9161
Joined: Tue Apr 07, 2009 2:23 pm

Re: Likely FMT failure anyone from Missouri?

Postby beth22 » Thu Jun 22, 2017 12:31 am

afroney - If you don't have a positive test, how do you know it is C diff and not something else? I know of people who got Crohn's, Celiac, and UC after c diff not to mention SIBO. Have you been tested for anything else?

afroney
New User
Posts: 21
Joined: Fri Oct 07, 2016 4:13 pm

Re: Likely FMT failure anyone from Missouri?

Postby afroney » Sat Jun 24, 2017 8:27 pm

beth22 wrote:
> afroney - If you don't have a positive test, how do you know it is C diff
> and not something else? I know of people who got Crohn's, Celiac, and UC
> after c diff not to mention SIBO. Have you been tested for anything else?

Ive actually had a handful of positive tests since the last failed FMT. The most recent was about a month ago, and i'm just starting to get over it. Two of my doctors have told me they don't trust the Cdiff test results from our local lab (testing was outsourced to the lowest bidder and specimens are processed in large batches, often winding up with paitent mixups).

I'm told all the scopes and scans I've had rule out the other conditions you mentioned. Wouldn't surprise me if I had something like UC, but testing hasn't showed it.

beth22
Long Time Contributor
Posts: 9161
Joined: Tue Apr 07, 2009 2:23 pm

Re: Likely FMT failure anyone from Missouri?

Postby beth22 » Sun Jun 25, 2017 2:24 am

I've had the same thing happen. I have tested positive on PCR for the last year, but negative on EIA that is a follow-up. Doctor says it is a low grade infection, but it is there. I am planning on doing some more home FMT enemas. They have helped me in the past. I don't want to treat with antibiotics because it will just start the whole thing all over again - kind of like hitting the reset button. Every time I treated with vanco, I wound up with a horrible relapse. However, I did have a bad case of SIBO after my FMT. Have you had the breath test for that? When I took Xifaxan to treat it, I felt better and I did not relapse with c difficile.

afroney
New User
Posts: 21
Joined: Fri Oct 07, 2016 4:13 pm

Re: Likely FMT failure anyone from Missouri?

Postby afroney » Sun Jun 25, 2017 10:37 am

Haven't had a breath test for SIBO, yet. I was under the impression that SIBO comes with lots of gas and bloating. Don't really have any issues with either. I usually have vomiting, severe D 10-20 times a day, fever, pain, and crippling fatigue. Blood tests usually reveal high WBC and dehydration.

I think the docs see the severity of the symptoms as textbook severe Cdiff and will even perscribe Vanco with negative test results. When I asked my GI docs about the other diseases you mentioned, they said my symptoms were too severe and testing didn't support it.

The good thing is that my relapses are getting less and less severe and frequent. I feel like Im winning the battle, just slowly. The current infection specialist I see has me on a vanco taper regiment, followed by probiotics.

beth22
Long Time Contributor
Posts: 9161
Joined: Tue Apr 07, 2009 2:23 pm

Re: Likely FMT failure anyone from Missouri?

Postby beth22 » Mon Jun 26, 2017 2:06 am

That sounds like a good plan. You want to try and beat the c difficile down as much as possible. If you do an FMT in the future, the chances of it working are better if you have been on meds and suppressed the c difficile.

The only thing I can add is that I got pancreatitis because of c difficile. My pancreatic enzymes were elevated. Vomiting is not a common symptom of c difficile, although some people do get it. I got terrible nausea, but no vomiting. Pancreatitis can do this too. Your doctors may already have checked you for this, but you could mention it when you speak to them.

I hope you feel better soon. I had many relapses of c difficile, was on meds for a long time and had more than one FMT. I can well understand how frustrated you feel.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 1 guest