Years of C Diff, please any suggestions

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Finn17
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Years of C Diff, please any suggestions

Postby Finn17 » Mon Jun 18, 2018 1:06 am

Hello,

I am new and have a different sort of experience with C Diff. Summer of 2015 I started having the most foul smelling projectile vomit and horrible acid. Eventually I developed diarrhea, was so dehydrated and sick I was hallucinating. Finally I was diagnosed with C Diff which was new to me. Two rounds of Flagyl and I felt so much better and life went on.

Fall 2016 I developed rancid smelling diarrhea and I knew it was C Diff. No antibiotics at all, so no one believed I had it until my labs, dangerously low potassium and a positive C Diff. First Flagyl, then Vancomycin, and I was vomiting and going excessive diarrhea, always the worst in the late night and morning. My potassium was so constantly low affecting my heart I was hospitalized. After going home and on a Vancomycin taper it just continued. They did a Hida scan, EGD, cat scan, couldn’t find anything else. I was negative at this time but they said it was from the Vanco.

A new doctor told me I would never recover, that in spite of kiefer and various methods of trying to rebuild my gut the C Diff damaged me permanently. I tested positive again shortly after when I again had persistent diarrhea. I was back on Vancomycin.

Last May I went to a teaching hospital. The GI was shocked the other doctors had left me so malnourished. Ironically the night before my appointment I started vomiting huge amounts of liquid with little chunks of blood, along with diarrhea that had been ongoing again (rarely I would get short breaks or at least a smaller number of stool). I was admitted to the teaching hospital, and was throwing up so badly I couldn’t even swallow. They used a general anesthesia to do an EGD and colonoscopy. The GI told me my bicarbonate levels were very close to the point of death. I was told I had hundreds of tiny ulcers in my upper intestines, put on carafate, IV potassium and Vancomycin. I went home after five days, had a seizure the day after getting home because of damage to my heart. Now I spent two more days in the hospital and am on heart medication.

I finally had a good four or so weeks until the vomiting and diarrhea slammed me, back in the hospital, three rounds of Dificid, then Vancomycin until FMT. It came pouring out before I even left the hospital after the FMT. The diarrhea continued all through fall and winter, but the cultured C Diff test was always negative so the GI who said I was malnourished said I needed to eat better. I was trying, but I kept losing everything, had lost 50 pounds, my teeth are chipping, hair falling out, etc. In March 2018 I was going diarrhea and throwing up what looked like dog food. A PCR test was positive. More Vancomycin. Two months later severe attack, another positive PCR. Now a round of Dificid and they want to do another FMT.

Has anyone had anything remotely like this, vomiting like that?

I really don’t want another FMT, especially since the first was useless and I am in the hole thousands. Are FMTs exaggerated in some of your experiences?

I am scared beyond words. No doctors agree, some say it’s impossible to have positive tests multiple times, but what else would fake it? I have had positive in both the rapid test as well as the cultured test.

Please, can anyone help with suggestions, without my asking for medical advice? I am sick of walking around in diapers and being treated like a leper. I have bleached and scrubbed and thrown out everything from personal care items to carpets and furniture. Thank you.

lila30
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Re: Years of C Diff, please any suggestions

Postby lila30 » Fri Jun 29, 2018 12:35 am

I am so sorry that you are going through these difficult times. As I just found out I am c. diff positive. I am on vancomycin right now. I've been reading a lot of other people's stories on here and some had to do a couple or multiple FMT to be cured. Also pray, Jesus cures! Have faith! I really pray that you get to feeling better!

beth22
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Re: Years of C Diff, please any suggestions

Postby beth22 » Fri Jun 29, 2018 1:27 am

Finn - I did not see your post before. I am one who has had multiple FMTs. Was your FMT donor someone you knew? I ask because I was told to follow up with home enemas after my FMT and I think those helped me more than the actual FMT it self. Since then, I have done them as needed, like after antibiotic use. I am a c diff carrier as I test positive on PCR, but negative on EIA, which means I do not have an active infection. Your case is different, as you had symptoms. FMT is what helped me the most. If you do another, maybe use Dificid as the antibiotic that you take before, as it kills the least good bacteria.

Lisa33
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Re: Years of C Diff, please any suggestions

Postby Lisa33 » Fri Jun 29, 2018 9:44 am

So sorry for all that you have been through. Nobody should have to endure c-diff for so long. There were a couple of posters on here who had extremely stubborn cases, who did bottom up and top down FMTs, which finally did the trick. I believe one poster was skizaami. You can look up the older posts. Maybe something else to look into with your doctors?

NanciT
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Re: Years of C Diff, please any suggestions

Postby NanciT » Fri Jun 29, 2018 11:13 am

Hi

Sorry you are going through this and for so long. I had severe vomiting with CDIFF, until I was on treatment for 2-3 weeks, it would not let up. It left me with a hernia. I was diagnosed in March 2014. After failing Flagyl, I moved onto Vanco. I felt better on Vanco but the vomiting would start and I would end up in the ER over and over. After some research, I found the Vanco which I was on for months caused severe low potassium( not too common) but in my case it did which led to cardiac issues, severe vomiting etc. I went through 3 GI's, my last one also told me I would never recover.

In 2014 FMT's were not as common because the FDA was questioning them and I found it difficult to find anyone to do one, was on a wait list for 4 months with the only GI I could find. During that time I found a research paper on a Dificid taper, my GI finally agreed to give me the refills and I was on a tapered dose for months. I found being on Dificid that long I felt terrible, ended up in the ER A few times but pushed through it. I finally got in with the GI for an FMT but he felt the Dificid taper may work, asked me to complete it and return if the symptoms came back.
They never did, I was left with Post IBS and recovery has been slow.
Talk with your GI about a Dificid taper, there are several on the site that did a 30 days taper with great success.
NanciT

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

Re: Years of C Diff, please any suggestions

Postby Finn17 » Tue Jul 03, 2018 8:06 pm

Thank you all so much for sharing. Wow, I didn’t think there was anyone else with the excessive vomiting, ER visits, and low potassium. I had never been to an ER before this nightmare started, and it reached a point like “oh, it’s you again?” as my potassium was so low my heart was going bonkers.

I am on Dificid now, and am trying to convince someone about the taper, but having difficulty. I really have never experienced something in which you have to do the research because it’s such a misunderstood illness.

It’s also interesting about the test. The PCR is often positive, the other (I believe it’s the EIA), shows negative for the toxin but positive for C Diff NAAT R). I am wondering how much my inflammatory arthritis plays into this.

Thank you all so much, I have more questions to ask my doctor now!


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