FMT & Antibiotic Failure

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afroney
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FMT & Antibiotic Failure

Postby afroney » Fri Oct 07, 2016 4:28 pm

Hello, new to the forum.

I developed a serious case of C diff after a 3 month hospitialization for Diverticulitis, Sepsis, and colon resection.

Its been 8 months, 5 hospitializations, multiple courses of Flagyl, Vancomycin, and Difficid, and 2 FMT treatments (local university) and still no cure. My family doctor says he has never seen such a treatmant resistant case in 34 years of practice. The GI/infection doctors at the University are at a loss of what to do.

Has anyone experienced a case like this? I'm on a pulse regiment of oral Vancomycin at the moment. It keeps me out of the hospital/grave, but cant seem to cure it.

NanciT
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Re: FMT & Antibiotic Failure

Postby NanciT » Fri Oct 07, 2016 6:31 pm

Hello Afroney Welcome to the site, please read the first thread for all new posters

So sorry for such an ordeal you have been through starting with the surgery. It sounds like you have been on several rounds of antibiotics, did you do a Pulse/Taper dose with Dificid? I ask because there are many including myself who went on for the typical 10 days and then relapsed. I then went on a long taper and finally am CDIFF free.
One to the FMT's. Were they both done via colonoscopy? Were you on Vanco before the procedures?

Sorry for so many questions, we don't often hear of someone being treated for a long period of time and then having 2 FMT's. How far apart were they?

You mention a University hospital, were you seeing both a GI and an ID? I would imagine with so many relapses they have had everyone on it. What period of time was this?

After your FMT's did you have the watery D that returns? I ask because so often I thought it had returned but after a long taper, I finally tested negative.
Sorry you have been through this, very difficult being Post op and getting CDIFF
NanciT

afroney
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Re: FMT & Antibiotic Failure

Postby afroney » Fri Oct 07, 2016 9:37 pm

Thanks for the response!

Oddly enough, I had showed no symptom improvement with Difficid, so it was abandoned after 10 days. Vancomycin is the only oral antibiotic that has been able to reduce severity of symptoms.

Both FMTs were done by colonscope. First FMT was about a week after the end of the Difficid, mid June. I discontinued Vancomycin 3 days before the second FMT, mid September. They deposited stool in three different areas of the colon each time. I was told to give the FMT treatment 2 weeks to work. I did, with no symptom relief and positive c diff tests preceding and following each treatment.

They have 2 GI docs and an infection control specialist working on this at the University. My family doc and the two surgeons (friends of the family) that did my resection are helping me as well.

I have watery to semi formed d, stomach cramping, vomiting, fatigue, and sometimes fever. The symptoms sort of rise and fall, but never go away completley.

NanciT
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Re: FMT & Antibiotic Failure

Postby NanciT » Fri Oct 07, 2016 9:52 pm

Your case is complicated with the surgery and infections you also had previous to CDIFF. It sounds like you have good MD's on board and that is so important. There are cases that can be very hard to treat and I also wonder about your weakened immune system post surgery when getting this.
If Vanco works and they have you on a pulse taper, maybe that will do the trick this time.
I don't often hear of Dificid not working if a pulse taper is included but it sounds like you had to stop it before.
I did not feel well on Dificid, even ended up in the ER with abdominal pain but at the time I was on a waiting list to see the only GI who did FMTs in my area so I had no options. I went on a long taper, saw the new GI and he said to complete it...fortunately it took care of it. I was on treatment for a total of 10 months which also started with Flagyl and Vanco. I am also one of the few here on the board that had vomiting with CDIFF each time I knew it would be positive...I could not stop the vomiting.
I wish I had some answers for you, maybe the Vanco will work this time. If not, you may talk with them about trying Dificid again and include a taper.
Do your Gi's have you on any probiotics?

afroney
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Re: FMT & Antibiotic Failure

Postby afroney » Fri Oct 07, 2016 10:28 pm

Good point.

I also have Parkinson's Disease which the docs think has been the "x" factor in all of this. In most people, a diverticulitis case like mine would have gone in for immediate resection. Major surgery often kills or permanatly weakens PD sufferers, so they tried to get rid of the sepsis/diverticulitis with Flagyl & Levaquin. After nearly 3 months of IV antibiotics and little improvement, they gave up and said either surgery or Hospice.

I'm guessing all of those antibiotics, surgery, pre existing health issues, and poor recovery made a perfect place for a super Cdiff bug.

Fortunately, it hasn't damaged my colon. I was awake during both my FMTs and the doctor explained to me my colon looked really healthy for someone who had a complicated surgery and c diff for so long. In all of this, I do think the severe attacks are getting less frequent and less intense. Ive stepped down from needing Dilaudid to control the pain to Bentyl. And no more bleeding.

ETA... My doctors are mixed on probiotics. They all agree they cant hurt, so I take the Phillips brand capsules and eat yogurt.

The vomiting thing is one of the worse parts. When it starts, it just doesn't stop - to the point of severe dehydration. The docs thought it was strange - not typical with cdiff, apparently.

amyc
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Re: FMT & Antibiotic Failure

Postby amyc » Sat Oct 08, 2016 3:19 am

There was a moderator or frequent poster here years ago who took vanco for years because she would relapse every time she stopped it. Her doctors just decided to keep her on one or two doses per day for the rest of her life, and it worked for a really long time. She passed away from unrelated causes, but lived healthy and happy for many years on vanco. Bobbie will know her name and more about her case.

Soimez
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Re: FMT & Antibiotic Failure

Postby Soimez » Sat Oct 08, 2016 8:11 pm

Hi, I'm sorry to here of all your troubles.. I too have been in a long battle with cliff I've relapsed 3 times and have done 2 very long vanco tapers over the the last 10 months now today is 21 days off vanco and I am having pain in my right side and I also had some mucous today.. my next step would be dificid as I'm only 38 and they don't want to do a FMT on me yet.. my specialist here in Toronto Ontario told me there were only 10 people she was unable to cure and they were all over 80 and they had to remain on 1 pill of vanco a day... the only thing is I'm eating right I drink kefir everyday also saukrout and I take a bio k in the mourning with some sacc boul and more sacc boul at night plus more kefir.. like wtf doesn't someone have to do to get rid of this... and I got it from a negligent doctor prescribing me clyindmycin when I never even need to be on antibiotics in the first place..

OCmama
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Re: FMT & Antibiotic Failure

Postby OCmama » Wed Jun 14, 2017 10:03 pm

Soimez!

We are on the same regimen, bouliardi in the am and pm, bio k in the am, kefir and sauerkraut during the day; I take two tumeric for good measure too :-)

Seriously the only foods I eat are things I know my stomach can handle and that might fight this thing.


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