2nd FMT

If you have had or are considering an FMT please share your experiences here.
okaylo
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2nd FMT

Postby okaylo » Tue Sep 13, 2016 4:10 pm

Hello to all. I'm a 26 year old female. I had an FMT in June of this year after multiple recurrences of Cdiff treated with Flagyl twice, Vancomycin 3+ times including a long tapering dose, and Dificid 3 times with no resolve. I had high hopes that this would work and prevent further infections, however, as of last week, the Cdiff is back and is considered to be active infection with both Toxin A&B detected. I am back on Dificid. I have seen 4 gastroenterologists as well as an infectious disease specialist and the general consensus is take meds and do a 2nd transplant. I meet with my main GI next week to go over everything and finalize a decision as I have a long complicated health history that started with food poisoning back in 2013. This progressed into an H-pylori infection, food intolerances, gastritis, post infectious IBS, a hiatal hernia, Barrett's Esophagus, small intestinal bacterial overgrowth, and finally Cdiff. I've had multiple procedures including 2 endoscopes, two colonoscopes, and a partial sigmoidscopy. Biopsies have appeared normal and no evidence of Chrohn's or microscopic colitis has been seen.

I have tried everything under the sun in terms of gut repair and digestive aid from probiotics, digestive enzymes, peppermint oil capsules, antidepressants, PPI's, antispasmodics, a gluten free diet, natural supplements, essential oils, antibiotics, and I even shelled out a large sum of money to see a naturopathic doctor. NOTHING has worked. Cdiff has controlled my life for almost 2 years and has created nothing but stress, upset, misery, and anxiety. I clean like no tomorrow and am constantly consumed by the worry and fear that Cdiff causes. I have put my engagement, moving out, and anything enjoyable on hold for so long I don't even know what it is to enjoy or have fun anymore. Personal and professional relationships have suffered.

Back to my question regarding a 2nd transplant: Did anyone have a 2nd transplant performed after a first failed transplant and have success? If so, did you use the same donor as the first transplant or a different one? Any advice is greatly appreciated.

roy
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Re: 2nd FMT

Postby roy » Tue Sep 13, 2016 4:17 pm

One question and it's an important one.
Do you have the classic symptom of frequent watery D or or you being treated for c.diff just because the tests are positive?
OK a second one.
What type of test says you have c.diff?

okaylo
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Re: 2nd FMT

Postby okaylo » Tue Sep 13, 2016 4:23 pm

Each and every time I tested positive for Cdiff I did not ever have watery diarrhea except for the very first time. The toxins have been present with no indication of the diarrhea and have made me literally feel as if I wanted to die I was in so much pain and felt so sick. The tests that confirm that I have Cdiff (being GDH positive and Toxin A&B positive) is:

Clostridium difficile Toxin B, Qualitative, Real-Time PCR

I believe you have assisted me in my posts prior to this one and have stated that if the toxins aren't being produced and the test solely detects the antigen than the test is considered negative and not an active infection. I do agree with this, however, this time around the Toxins are there and are causing havoc. My gut is on fire, my stools are now loose, I'm nauseous, and so on. The reason I may not have had diarrhea multiple times a day is because I have taken Questran over the past few years which binds everything up and could've masked the diarrhea.

roy
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Re: 2nd FMT

Postby roy » Tue Sep 13, 2016 5:53 pm

This is the reason I asked those questions.
The test you had is the one in this report.
You have not had a toxin test.
You have had a lot of treatments that can have side effects though



http://www.medscape.com/viewarticle/850855

okaylo
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Re: 2nd FMT

Postby okaylo » Tue Sep 13, 2016 6:03 pm

I cannot view that link without having to create an account. Perhaps you could tell me what the difference is... Thank you.

roy
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Re: 2nd FMT

Postby roy » Tue Sep 13, 2016 6:22 pm

I have sent you the full article by PM
PCR tests for a gene that toxin B produces.
Not the amount, not toxin A, and not if you have any natural immunity.

susant
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Re: 2nd FMT

Postby susant » Tue Sep 13, 2016 6:24 pm

I'm confused.. You said the test was the pcr or was it the GDH plus toxins a and b?

okaylo
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Re: 2nd FMT

Postby okaylo » Tue Sep 13, 2016 7:15 pm

Susant: According to my results from Quest Diagnostics, the test is called Clostridium Difficile Toxin/GDH/ W/REFLEX TO PCR.

RESULTS:

GDH ANTIGEN: DETECTED
TOXIN A AND B: DETECETED
TOXIGENIC C. DIFFICILE DETECTED.

I believe I had listed an incorrect test name on my prior post. My apologies for the confusion.

Overthis
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Re: 2nd FMT

Postby Overthis » Tue Sep 13, 2016 7:51 pm

Okaylo I'm so sorry you are going thru this. I'm writing to let you know i take Welchol (similar to questran) and i had really loose bm's and very rarely got watery d and my gi dr said that was enough to make them test. I felt like death and sure enough would test positive. My 1st fmt thankfully worked but i will definitely say a prayer for you.

beth22
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Re: 2nd FMT

Postby beth22 » Tue Sep 13, 2016 8:57 pm

Your test is positive and if you are having symptoms along with it, then you should definitely treat.

susant
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Re: 2nd FMT

Postby susant » Tue Sep 13, 2016 9:02 pm

I know how frustrating it is!! My first fmt failed as well and I'm only hoping my second one worked. You WILL get well. It just takes some of us a lot longer. I'm only 28. So I'm young as well... It doesn't make sense but it will get better. We both will! Lots of thoughts and prayers

georgina
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Re: 2nd FMT

Postby georgina » Wed Sep 14, 2016 12:55 am

So sorry you are sick again , unfortunately for some people it takes more than 1 FMT to get well.Having the second transplant done 48 h after your last Dificid pill may do the trick.Prayers all goes well!

Lisa33
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Re: 2nd FMT

Postby Lisa33 » Wed Sep 14, 2016 8:31 am

I'm so sorry your FMT did not work and you have c-diff again. I can't imagine your frustration. There are several posters on this site who had to do a second FMT. I do not have any personal experience with FMT's, but there are a couple of posters who had very stubborn cases where the FMT failed. They went on to do a bottoms up and top down FMT, which ultimately cured them. One poster was Skizamii. Although, recovery was no walk in the park for these posters and can take a long time, they were cured of c-diff. I just wanted to share as it can be something for you to look into with your doctor.

As Susant replied, she also had to have a second FMT. It's sometimes comforting to hear from somebody else who is going through the exact same situation. It makes me so mad that some of you have to deal with this for so long. But ultimately, you will get better.

Keep positive and hopeful as the second FMT will most likely do the trick.
Lisa

roy
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Re: 2nd FMT

Postby roy » Wed Sep 14, 2016 9:12 am

What you should ask your Dr is why you had all these symptoms BEFORE you had c.diff and was given a diagnosis of PI IBS following food poisoning In 2013.
Your more recent diagnosis of c.diff might not be the cause of your ongoing symptoms.
It's easy to blame c.diff (a natural gut bacteria) but the Dr should be treating the patient not the test result.
Of course it's possible that it's c.diff causing you to be sick but you had colonoscopy's and other investigations a long time before c.diff.
If c.diff was causing symptoms then it's a very negligent Dr who misses it during at least 2 colonoscopy's.
I assume they ruled out the obvious coeliac and lactose alergy type diseases.
I would not be too happy to be fully accepting that I spent 2-3 years having investigations when I did not have c.diff and now that c.diff is detected it's the only reason I am sick.
Maybe another FMT might work but I would be asking the Dr's to reases my history and take into account that I had those symptoms a long time before I had c.diff.
Please don't think I am saying that c.diff is not a cause of your illness but it's very likely only part of the problem.

NanciT
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Re: 2nd FMT

Postby NanciT » Wed Sep 14, 2016 10:41 am

I am so sorry you are going through this, the frustration of relapse is terrible and so wearing not only physically but also emotionally. There was recent article listed by the Peggy Lillis Foundation about how many cases of CDIFF are far more difficult to treat than once thought. We are seeing that on this board also.
I did not have an FMT because it was not an option at the time for me but had several relapses. We have posters who have had 2 FMT's that have worked (one posted above).
I see you were on Dificid but not clear if you did a taper. I went on a long taper which finally cured me.
Hoping whichever your GI and you decide, you will be rid of this once and for all...you will get there
NanciT


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