Second FMT, doubts

If you have had or are considering an FMT please share your experiences here.
Finn17
New User
Posts: 12
Joined: Sun Jun 17, 2018 5:37 am

Second FMT, doubts

Postby Finn17 » Sat Jul 28, 2018 5:16 pm

Hello,

I am a pretty new poster, and just had my 5th hospitilaztion as a result of C Diff. I am scheduled for a 2nd FMT, the 1st being in September and first, in spite of ongoing symptoms, being told it was successful, now I am told it failed.

I don’t doubt I had C Diff several years ago. I don’t think my body healed, and two GIs blew it off as taking time. Well, in that time my hair is falling out, teeth have chipped, 50 pounds and counting off. I also developed an irregular heartbeat from the constant issues with dangerously low electrolytes. It was so bad from vomiting blood and severe diarrhea last year they told me I was close to dying. I thought I was slowly bouncing back, but with these weird flare ups, almost like I imagine IBS must act.

In March, a PCR test came back positive, again in May. That test, I was told, can have false positives. The other test was CDIFF NAAT R POSITIVE, C DIFF TOXIN NEGATIVE. If there is no toxin, I don’t understand how I have C Diff.

A third, and the last GI I could get into insists this is C Diff back again and scheduled an FMT this week. I don’t deny something is wrong as I have been telling them since the initial infection. I just don’t feel confident it’s C Diff with these results, especially a transplant. I am finishing Vancomycin now. Has anyone else encountered this, or these concerns? Thank you.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Second FMT, doubts

Postby beth22 » Sat Jul 28, 2018 5:50 pm

You could have something else going on besides the c difficile, but I assume that you were tested for other pathogens. If not, it might be a good idea to do so. FMT can sometimes help other conditions like IBS, Crohn's etc. It sounds as if medication for c diff is not helping you that much. I know vanco made me feel worse in many ways, but FMT did help me more than anything else. Talk to your doctor about your concerns. Are they doing FMT via colonoscopy? If so, the doctor can check to see if you have anything else going on.

Finn17
New User
Posts: 12
Joined: Sun Jun 17, 2018 5:37 am

Re: Second FMT, doubts

Postby Finn17 » Sat Jul 28, 2018 5:59 pm

Thanks Beth! Yes, they have checked for other pathogens, checked my liver, and my esophagus. Two things concern me, and maybe it’s just the doctors I have dealt with, but it seems like some specialists take a question as an insult. It’s our body for crying out loud.

But I have always had acid (don’t take Proton Pump Prohibitors, just Pepcid), and ulcers. I also have a rare inflammatory form of arthritis, and wonder if that plays into things. It’s so frustrating, as all of you know!

Finn

roy
Long Time Contributor
Posts: 3293
Joined: Sat Aug 02, 2014 1:05 am

Re: Second FMT, doubts

Postby roy » Sat Jul 28, 2018 6:34 pm

Vomiting blood is not c.diff.
Beth could be right that something else is going on.
How recent was your liver checked?
Not just blood (LFT) tests but ultrasound and a fibroscan.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Second FMT, doubts

Postby beth22 » Sat Jul 28, 2018 11:54 pm

I don't know much about how arthritis affects the GI tract, but that would be an area a rheumatologist might help with. A scan like Roy suggested might be a good idea. I had an abdominal MRI and every few years I get an MRCP because of my pancreatitis. If your foctor wants to do FMT make sure he does the colon check as part of the colonoscopy before he puts in the donor stool.

Finn17
New User
Posts: 12
Joined: Sun Jun 17, 2018 5:37 am

Re: Second FMT, doubts

Postby Finn17 » Sun Jul 29, 2018 7:33 am

Thanks Roy and Beth. I had a hydascan of liver, and was told that vomiting was from the ulcers. I have always had vomiting during these rottten times. Not with blood mind you, but even this last hospital stay it seems to be tied to acid. It burns, I try some deep breaths and moving around, but it keeps going until everything comes out. I have read vomiting can be part of later stages of C Diff, but still feel it’s more than excessive.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Second FMT, doubts

Postby beth22 » Sun Jul 29, 2018 9:41 pm

I was very nauseated when I had active c difficile, but I never vomited. However, when I have had problems with acidity, it did make me nauseated too. Do doctors know what caused the ulcers? H pylori? The arthritis?

Finn17
New User
Posts: 12
Joined: Sun Jun 17, 2018 5:37 am

Re: Second FMT, doubts

Postby Finn17 » Mon Jul 30, 2018 11:21 pm

Hi Beth, no definite answers in regard to the ulcers. I have struggled with acid my whole life and had a peptic ulcer years ago. Ironically my dad and brother have the same.

I am currently bracing for my second FMT. I feel I have no choice. Even though I have been through it, I am very nervous.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Second FMT, doubts

Postby beth22 » Mon Jul 30, 2018 11:24 pm

My second one was much better than the first one and helped. I don't regret doing it. Good luck with yours. Let us know how it goes.

Finn17
New User
Posts: 12
Joined: Sun Jun 17, 2018 5:37 am

Re: Second FMT, doubts

Postby Finn17 » Tue Jul 31, 2018 6:35 pm

Thanks Beth, I am home. I could only hold it in two hours, which is one hour longer than the first. The first I lost mostly stool, this seemed more like the saline with just some stool color. It seems to have stopped, unlike the first was which just kept coming.

I guess time will tell. I hope for the best, but am not sure with foods. They just say eat my old diet immediately, but that didn’t work last time.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Second FMT, doubts

Postby beth22 » Tue Jul 31, 2018 10:46 pm

I would et bland foods for a few days and then slowly add.

Zapper
Regular Contributor
Posts: 221
Joined: Thu Feb 11, 2016 10:28 am

Re: Second FMT, doubts

Postby Zapper » Wed Sep 12, 2018 12:45 pm

Hi,
I just wanted to comment that I ended up needing 2 FMTs as well- my 1st didn't take and I was back in the hospital within 3 days. We all can have different symptoms- we don't all fit in this box of symptoms. I too had bad nausea and vomiting along with my D. I had no other infections/disease/autoimmune issues. I think after a while (2 years of infection) my body just started to shut down cause nothing was keeping the cdiff in control. It looks like to see your doctors often and they do appropriate testing. My only suggestion (and you probably already do it) is to keep them up to date with new or changing symptoms.
My 2nd FMT ended up working (used a different donor) so I am here to tell you to not give up hope on this one. Just keep trying. Even after the 2nd FMT my recovery was very very difficult BUT I am still cdiff free almost 1.5 years later. There is a light at the end of the tunnel.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 2 guests