Confused about c. diff once again

Following up on a recent post of mine, the problems I was having was again due to c. diff. My instances of this infection were diagnosed on 12/30, 1/23, and now 3/8.

My doctor took forever to call me back and tell me that, yes, I tested positive again, so with that delay I still have yet to pick up my antibiotic (vanco again). What's confusing me is that my condition is not deteriorating. I have felt pretty good the last 3 days. How could that be? If this infection has been sitting in me for however many days, wouldn't I be getting worse every day? I mean, I've had some Kefir and some healthy tea, but that's it.

I'm going to get the prescription in about an hour. He's having me take it for 3 weeks instead of 10 days this time. Someone here had told me that you can still test positive for c. diff for 60 days after treatment. I want to make sure I'm not heading into another, longer round of vanco if I don't need to. I know the infection is dangerous, so I don't want to put it off any longer. I'm just second guessing this diagnosis now. Am I just overthinking it? Doesn't help that my parents always think I'm assuming the worst and am just having "a little setback."

I have a lot to learn about this disease and all its complications.

quincy said...
What are you meaning...complications of c.diff or UC? UC doesn't cause c.diff, and c.diff isnt a complication of UC directly.

I have also heard that c.diff can remain active after treatment.....it should be continually monitored.

You might want to consider fecal transplant for c.diff. i dont know if there are different strains of c.diff, but one can end up with VRE from continual vanco treatment.

Have others in your family been tested for c.diff as well? Reason is we can also pick it up hand to mouth if it's a more prolific strain.

Off to google to seek more answere about my own questions.

q

Hey quincy,

To answer your first question, both. I know they don't directly cause each other, but UCers are much more prone to developing it, so that's what I meant. Never had to deal with c. diff until I was diagnosed with UC.

Yes, he has been talking to me about FMT. I have an appointment coming up at the University of Chicago, so I'm going to ask them about it.

Oh boy, VRE? Now I have even more to think about, and more is at stake if I go ahead and take the antibiotic again. Let's say I get VRE before FMT...will the FMT no longer be effective?

Okay, so that's what we've been doing, monitoring the c. diff, so if it is "active," that means I HAVE to take the antibiotic, right? (at least until I look more into the FMT)

Sorry, hopefully I'm not confusing you with my confusion.

GloGirl, funny your story almost lines up exactly with mine. Same time table too. Got diagnosed over Christmas with C.Diff, took a 14 day Vanco course. Came back positive after, another 14 day vanco course, then test came back negative. Then now it is again positive.

My doctor has now put me on Dificid which I take twice a day, 10 day course. I will say, it is expensive. Out of pocket cash without any insurance etc. would have been $5,283. Dificid does have a patient savings card though (up to $3,100) and my insurance paid a lot so I ended up only paying the minimum of $50.

Good luck, I'll keep you updated on the Dificid development.

uhh sorry you are dealing with it again.

i got rid of it with a 60 day course so my doctor only prescribes those for me from now on.

but yes, you can test positive for up to 60 days after treatment and should only take more antibiotics if you are experiencing symptoms. my gi doctor rights the guidelines for c diff treatment and he said he would never give me antibiotics if i was not having symptoms.

Are you in a flare too or are you just dealing with c diff?

Obviously, you know what your "normal" feels like so if you feel symptoms, you should take it. The long course worked really well for me and I haven't had to take vancomycin since last May.

yeah, if you feel pretty normal then i would hold off on the vanco. you only need antibiotics for it when it is an overgrowth giving you problems.

Hey there,

I'm in the same situation right now. When I was first diagnosed with c diff, I was on prednisone for a flare. My dr took me off of prednisone and put me on flagyll. I was fine and my symptoms weren't bad, I was still able to work and go about life. But when my body was completely off of pred, I flared like crazy and ended up in the hospital. so it is possible to feel ok when diagnosed with c diff, as long as you're not flaring too.

I don't understand the testing positive for 60 days thing either. When I was in the hospital, I tested negative twice so I was clear. (that was only two weeks after originally being diagnosed). Then I relapsed after coming home and I'm on vanco now. I have been on vanco for two weeks and I'm only just now starting to see small improvements (going 8 times a day instead of 14). my Doctor plans to keep me on it for a six week taper. I haven't heard of the risks involved with taking vanco but I would definitely recommend sticking with a taper to avoid relapse again.

I'm considering fecal transplant as well. I've read a lot about its high success rate. however my dr said he wants to put me on dificid before doing fecal transplant, I don't want to go through another round of antibiotics :( does anyone know why Drs see fecal transplant as a last resort? I've been dealing with this for eight weeks and have been out of work, I don't know what to do convince my dr how desperately I need to get this resolved.

sorry this is so long! I just didn't expect to see anyone else with c diff right now on here!