FMT #1 FAILURE

If you have had or are considering an FMT please share your experiences here.
CDnotME
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FMT #1 FAILURE

Postby CDnotME » Sat Nov 24, 2018 6:48 pm

Guys, it happened. My literal worst nightmare. My first FMT failed exactly 4 months to the day after. No antibiotics or anything. I’m freaking out. When I got the call saying I tested positive again I burst into TEARS! This will be 4 years dealing with CDiff that keeps returning. Idk what to do, I had to practically twist my GI’s arm into going the first FMT.
Literally am losing hope and afraid this nightmare will never go away!

Lid49
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Re: FMT #1 FAILURE

Postby Lid49 » Sat Nov 24, 2018 8:23 pm

Do you have diharrea ?
Wat are you're symtoms?
You can be positive but not toxic cdiff. Please ask you're DR to tell you the type of test you had done.
So sorry , please do not loos hope. There are people hear like with 2 Fmt done. You will get better.
Lidia

CDnotME
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Re: FMT #1 FAILURE

Postby CDnotME » Sat Nov 24, 2018 10:18 pm

Thanks! I had a PCR test done with positive toxin and Ag. I had diarrhea with mucus and blood. Those are my “sure signs” of a relapse so I was 99% sure it was back before the test. Everyone keeps saying “you will get better” but it’s so hard to believe. I’m 25 with no other health problems. It’s just not making sense as to why I can’t fight this off. :/

Princepg
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Re: FMT #1 FAILURE

Postby Princepg » Sun Nov 25, 2018 2:37 am

Dont lose hope u will fight it off for sure. R u taking probiotics and eating ur yogurt? Fmt number 2 will get rid of it forever hopefully plz dont despair i know how hard this is for u..

beth22
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Re: FMT #1 FAILURE

Postby beth22 » Sun Nov 25, 2018 2:52 am

Do not lose hope. I had to have more than one FMT too. What are you treating with? Dificid might be your best choice followed by another FMT.

CDnotME
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Re: FMT #1 FAILURE

Postby CDnotME » Sun Nov 25, 2018 9:12 am

I am taking probiotics twice daily. Two different kinds.

And i was given Vancomycin. I wanted dificid. I’m just hoping my MD will do another FMT. I had to twist his arm to do this one!

NanciT
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Re: FMT #1 FAILURE

Postby NanciT » Sun Nov 25, 2018 10:21 am

I would talk with your GI about a Dificid taper. There is a 30 day taper that has worked for so many on this site. It's not the typical 10.
Sorry you are going through this,wishing you the best


NanciT

MKW
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Re: FMT #1 FAILURE

Postby MKW » Sun Nov 25, 2018 8:46 pm

I am so sorry this is happening to you... I had an FMT that worked, but I was afraid for a long time after. I have ptsd and actually take klonopin. I developed pi-ibs and SIBo afterwards also.
I have read statistics before that after 8 weeks a significant number of recurrences are actually new infections.
Maybe think about your environment... people you share a bathroom with... pets, work bathroom, friend that is healthcare worker that uses your bathroom.... any possible way you could have had a new exposure to c diff.
Just something to consider.

CDnotME
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Re: FMT #1 FAILURE

Postby CDnotME » Mon Nov 26, 2018 12:06 am

I am actually a healthcare worker. I work in an outpatient clinic. This is a newish job. I escaped the hospital setting in the hopes of avoiding C Diff exposure. I work in wound care and we prescribe ALOT of anyibiotics and I know of 3 of my patients who have had C Diff. So i was thinking maybe that was it. I thought about my home but I am a clean freak and germaphobe. After every BM I clean the toilet with ALL disposable cleaning supplies and BLEACH. Tons of Bleach. None of my family members have experienced any symptoms at all. That was my main concern. I don’t want any of my loved ones to have to experience this.

I just don’t want to have to leave the healthcare field because it’s my passion. I love being a nurse. And it took a lot of time and money to get my degree! Being a new nurse, there’s not a lot of opportunity for me to have an office job.

georgina
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Re: FMT #1 FAILURE

Postby georgina » Mon Nov 26, 2018 1:37 am

Sorry you have relapsed , i can relate to that tremendous frustration as i too have relapsed after my first nasogastric FMT after 7 months , and i may have relapsed again now after the colonoscopy FMT that i had in the summer of this year.After the colonoscopy FMT i had good and bad days like everyone has in recovery but since november started i had D with M almost every day.I had a EIA test done that was negative but i had lots of negatives in the past only to test positive after them. I am a healthcare worker as well.

CDnotME
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Re: FMT #1 FAILURE

Postby CDnotME » Sun Dec 09, 2018 7:45 pm

I’m scheduled for my second FMT on December 21st. I’m very nervous but i know that statistics are in my favor. I hope the second FMT cures me! I can’t take much more of this horrible infection. It’s been FOUR YEARS too long!!!

georgina
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Re: FMT #1 FAILURE

Postby georgina » Mon Dec 10, 2018 1:41 am

Hope the second FMT will be your magic bullet. Sending positive vibes your way for a speedy recovery.

beth22
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Re: FMT #1 FAILURE

Postby beth22 » Mon Dec 10, 2018 2:27 am

Good luck and let us know how it goes.

MKW
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Re: FMT #1 FAILURE

Postby MKW » Mon Dec 10, 2018 3:58 pm

I wish you luck and support for you upcoming FMT.
Psychologically coping with GI problems over a long period of time is very difficult. I have suffered with PI IBS and SIBo since my FMT in March 2017.
I wanted to say I admire your attitude about continuing to work in healthcare. Where would we all be without dedicated nurses who are devoted to helping others like you?
Hang in there. You are not alone and please keep us posted on how it goes, and reach out here if you need emotional support. The uncertainty of c Diff can be severely emotionally taxing.

Ajs
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Re: FMT #1 FAILURE

Postby Ajs » Mon Dec 10, 2018 7:02 pm

You are in my thoughts and prayers as well! There are many success stories with the second FMT, and I just know you’ll be the next!


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