5 Times the Charm

Had C-diff and got better

I have UC and I got diagnosed with c diff in April of 2015 in the hospital. I had just started Humira and had my 2nd loading dose when my symptoms got worse. I was running to the bathroom up to 20x per day. There was some blood, some mucus but I had no other symptoms. It never crossed the mind of my GI that it could be c diff. He put me on 40mg of prednisone which of course didn’t help. I just got worse. I went into his office a few days later and he looked at me and immediately sent me for blood work and booked me in for a flexible sigmoidoscopy the next morning. He had fully intended to admit to hospital for IV steroids. But after the scope, he said that my colon actually wasn’t in bad shape and my blood work seemed ok. So he upped my prednisone to 60 mg and sent me home. By the end of the week I was admitted to hospital. As per hospital policy they test all patients with long term diarrhea for c diff. Everyone was surprised when it came back positive. I had 0 of the classic symptoms (except diarrhea of course). Was treated with 14 days of Flagyl. While on Flagyl I had 1 fully formed bowel movement per day. It was magical. But the side effects were simply awful. Worse drug ever. When done the Flagyl, diarrhea came back. Positive for c diff again. Put on a 10 day course of Vancomycin. Again, felt great while on the vanco. No side effects. Once I was done, symptoms came back and I tested positive for c diff a third time. So I was put on a 6 week taper of Vancomycin. Again, I felt great. And once again, once I was done, I still had c diff. So my GI stopped all my UC meds and put me on Dificid. That did it. C diff was gone. I was c diff free for 3 months and then started Entyvio. After loading dose #2, everything went downhill. Horrible cramps, diarrhea, no sleep, dehydration. I felt awful. Tested positive again for c diff. My GI referred me to another GI who did fecal transplants. Got my fecal transplant in Nov. 2015 and have been c diff free since then. But now, in January 2016, I am waiting for the results of a stool test to see if I have c diff again. Hoping not.

Because it seems I never present with the typical symptoms, I ask to be tested often just to be sure. My GI has never disagreed and indulges me. I always tell others that there’s no harm in asking to get tested. The symptoms can sometimes be so similar to UC symptoms. I have to say, I loved being on the antibiotics (not Flagyl) because I didn’t experience any c diff or UC symptoms. I’ve never felt so good in my life. So when I tested positive for c diff, I was always a little happy and relieved because it meant that the antibiotics would make me feel completely normal.

As for probiotics, I have yet to find one that helped with the c diff. Florastor is recommended but it never did anything for me. Neither did Align, VSL#3 or Bio-k Plus. But everyone is different and I know it has worked for others. C diff is horrible. My thoughts go out to anyone who has experienced it or is currently going through it.

submitted by Kim V

Author: Kim V

Kim has dealt with C-difficile several times and made it past the symptoms and now is feeling better!

5 thoughts on “5 Times the Charm”

  1. Congrats Kim for being c-diff free, and really happy to hear that the fecal transplants did the trick for you!

    That is some serious awesome news, and thanks so much for sharing!


  2. Hey Kim,

    C Diff is The.Worst. Please let us know if your test for C Diff comes back positive or negative.
    So a couple questions… do you think that if the C Diff test comes back positive it’s because you got C Diff again or because it never actually went away? Also, how did you get your FMT? Was it via colonoscopy? Do you know how you got C Diff in the first place? I battled C Diff for half of 2015 and it was truly terrible. (I am 5’7″ and I was down to 87 lbs.) I had FMT via colonoscopy back in June and I’m still not feeling normal. As far as the probiotics, Florastor is the saccharomyces boulardii strain and I tried the Jarrow brand first and it did absolutely nothing for me. Then I switched to Ortho Molecular brand (which of course is more expensive) but that REALLY did make a difference for me. So maybe you could try a different brand? I really wish the best for you and I hope this C Diff nightmare is behind you for good.

    1. Thanks for the reply! C diff is definitely the worst! Honestly I don’t think the c diff ever fully went away. But I don’t know for sure because after finishing some of the antibiotics, I would be ok for about a week or so. Maybe it was just one never ending infection. I don’t pretend to understand exacly how it all works. As for my FMT, I joined a clinical study where the GI doc is testing to see if it makes a difference how the FMT is completed (oral or via colonoscopy). Once you join the study, you get randomly assigned one or the other. I got it thru colonoscopy. It’s nice because they follow you for 1 yr.
      No one really knows how I got it in the first place. I was sick a lot as a kid and as a teenager and probably took way more antibiotics than was necessary. My naturopath was actually pretty shocked at the amount of meds I was prescribed. My GI’s theory is that I always carried the c diff spores and once my immune system was compromised by biologics (Humira, Entyvio) they just took advantage of the situation and multiplied.
      And thanks for the suggestion on the probiotic! I’ll definitely look it up! 🙂 Good luck to you as well! Let’s hope we’ve beat this horrible little monster permanently!

  3. Right on Kim glad to hear that the fecal transplant is working for you.

    C-Diff 5x I so feel for you, seriously, C-Diff is the worse.

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