More susceptible or higher relapse chance?

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PatmanMI
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More susceptible or higher relapse chance?

Postby PatmanMI » Sat Feb 16, 2019 3:32 pm

Question I was hoping someone might know the answer to. All the documentation online says that if you've had c diff in the past with relapses, you're more likely to get it. Does that have an end date? My first infection and relapse were almost 4 full years ago, an I still at that increased risk for getting it again after I get thru this bout? Clearly something is "wrong" with my body in the sense that I've gotten it twice without any antibiotic use prior (Flagyl was nearest this time, about 4 years back).

So the question was kind of buried in there, but the gist is does the increased infection risk have an end timeframe associated? After 4 years, was I still MORE likely to get infected because of those prior infections or is it more of a correlation thing that because I have some extra susceptibility to catching the infection?

Hopefully someone has heard that from a doctor or found that answer on the internet, cause I haven't found anything conclusive on that.

Lid49
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Re: More susceptible or higher relapse chance?

Postby Lid49 » Sat Feb 16, 2019 8:23 pm

I'm not an expert but having 2 times cdiff with no antibiotic or exposure is unlikely, are you taking Ppi medication ore imunosupresant drugs? Are you working in the hospital or nursing setting?
If I were you I will try to find out.
There is no time frame ore reassurance that you will not have cdiff again if you are taking antibiotic or other medication that put the body in risk for it.
Take care Lidia.

PatmanMI
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Re: More susceptible or higher relapse chance?

Postby PatmanMI » Sat Feb 16, 2019 9:37 pm

Thanks for responding Lidia,

I am a computer programmer and have gone for physical therapy last month for an unrelated back issue. I have really bad ibs-d and take medications to combat that, but they aren't PPI inhibitors and I'm not on any immunosuppressants. I see a GI doctor annually, and had a rectal exam at this most recent visit 15 days before the positive test. I'm guessing that was the avenue this time, and the previous I had just gone to the dentist about 2 weeks prior. I'm guessing there the arm of the chair had enough spores or something and got a direct path into my mouth as they slid around their office. My guess is that something with my IBS (similar to how IBD can be) is making my system more susceptible to this awfulness. I haven't seen any correlation with the medications I take for IBS causing c diff to be more likely but I'll definitely ask my doctor.

It is possible that my wife is a carrier as well, but she's taken clindamycin a few times for tooth related infections (can't have any others since she's allergic to the other options) and didn't get it.

I've also seen that they updated the treatment guidelines so I've taken 2 doses of vanco (last time I did 2 rounds of Flagyl). I'm hoping that this kicks it in one round.

Thanks again for taking the time to respond, it's very appreciated

Obreezy
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Re: More susceptible or higher relapse chance?

Postby Obreezy » Sat Feb 16, 2019 10:50 pm

I'm sorry that you keep contracting this horrible disease, and it must be especially frustrating with no obvious cause. Our microbiomes are very complex, and can vary a lot from person to person for a variety of reasons. Things such as diet can play a big role. You mentioned you had IBS, I know there is some research on people with IBS and their microbiome, and I think it's slightly different than typical.

My GI doctor said that because I've had C Diff multiple times, my microbiome will be permanently altered and I'll always be at risk of getting it again, especially with antibiotics. Unfortunately there isn't enough research that points to a certain time frame when the risk drops back down to normal. He said that FMT can help restore the microbiome back to normal and reduce the risk of another C Diff infection (even with antibiotics), but it's not a perfect cure.

beth22
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Re: More susceptible or higher relapse chance?

Postby beth22 » Sat Feb 16, 2019 10:57 pm

I don't think there is an answer to this question because it really depends on the person's immune system and probably the strain of c difficile that the person had. Some people get it, don't even treat, and recover. Others, like me, have multiple relapses. Have you talked to your doctor about taking Dificid vs vanco? It is more specific to c difficile and kills less good flora.

PatmanMI
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Re: More susceptible or higher relapse chance?

Postby PatmanMI » Sun Feb 17, 2019 5:48 am

I did talk to the doctor about dificid, and they actually did prescribe it for me, but insurance didn't authorize it and no one was there over the weekend. I felt it was better to treat for the few days then wait it out for a potential override. I am taking lots of probiotics right now too, in hopes of filling back what's being wiped out by the vancomycin. I've taken all except one of them every day since my last infection.

I sure hope they do some amazing work with research and find a good vaccine so that people like us don't have to keep struggling with this terrible infection...

Once again, thanks for taking the time to respond and the kind words as they both help immensely.

AllisS
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Re: More susceptible or higher relapse chance?

Postby AllisS » Sun Feb 17, 2019 10:13 am

Neither a rectal exam nor spores on the arm of a chair at the dentist's would be a likely route of transmission for C. diff. I'll go as far as to say that both of these scenarios is impossible. Nor does having IBS predispose people to C. diff. There's a lot that's not yet known about susceptibility to C. diff, which tends to make people like us, who have had it, more fearful of it. However, the illness is becoming more widespread in what is termed "the community," meaning that people are increasingly picking it up in the absence of the typical risk factors, such as recent antibiotic use. But they aren't contracting it in the ways that you mention.

You also say that you're taking "lots of probiotics." Don't overdo; probiotics themselves can cause GI symptoms, which can then be confused with C. diff. There's been a massive bandwagon phenomenon of people taking probiotics, sometimes indiscriminately, as data supporting their usefulness is weak at best. I would pick one probiotic and take a modest dose once or at most twice/day.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

PatmanMI
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Re: More susceptible or higher relapse chance?

Postby PatmanMI » Sun Feb 17, 2019 11:04 am

Yeah, I definitely agree on the probiotics. I only added one new one since I got this infection, the rest of them I've been taking for over 4 years as they helped immensely with my ibs. I'll definitely discuss with my wife if I should adjust removing that newly added one.
What I'm taking is
Florastor - 1 at same time as vancomycin
Ultimate Flora 80 billion
Culturelle 15 billion
Generic brand 30 billion (newly added)
I like the 80 and 30 billions since they contain stuff commonly in the large intestine so in theory would be good to help crowd out the c diff while the antibiotics do their work.

For me in particular it's really tough to know what is me going off my ibs meds and what is c diff for the stools. The watery part is definitely c diff, but if I every forgot to take my lotronex (highest end ibs-d medication) I could easily go 6 times before lunch.

So far this infection feels different in the sense that I still have an appetite (not as big as before, but the first time I got the infection I had to force myself to eat even part of toast). However this time I'm not sure if I'm struggling to get it all when wiping (watery is challenging) or if I have a little leakage going on back there. I've got depends that I'm wearing right now to catch any of that grossness. I sure hope the watery d goes away very soon. I'm tracking all meals, meds and movements in a spreadsheet since I highly regretted not doing that the first time I got the infection since I don't exactly recall how often I went, how long until watery went away, etc.

I also fully agree with you on the fearing how I got the infection. This time is especially scary since I've been so vigilant since my last infection on not ever eating without washing hands first. The positive test was truly devastating as I was hoping it'd have been just a norovirus or something (that test was negative). I truly pray that the vaccine for this comes out and my heart goes out to all the people like me who have gotten this infection.

Thanks for taking the time to respond, I greatly appreciate it.

AllisS
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Re: More susceptible or higher relapse chance?

Postby AllisS » Sun Feb 17, 2019 11:47 am

Glad if anything I wrote was even marginally helpful. Hope you won't mind my additional observation that you are taking a truly staggering amount of probiotics! Or my suggestion that you eliminate several of them, even if on a trial basis, and see if any of your symptoms that you're attributing to C. diff/IBS subside.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

PatmanMI
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Re: More susceptible or higher relapse chance?

Postby PatmanMI » Sun Feb 17, 2019 12:03 pm

Yeah, after your previous comment I talked it over with my wife and I'll plan on cutting out the 30 billion and the culturelle. In also afraid of swinging the pendulum too much the other way so really this is just cutting out the culturelle from what I took before this infection. I'm not sure on the florastor since I remember getting fantastic results from it the first time while on Flagyl so that's why I've been wanting to keep on it. I did go from 2 about 2 weeks ago to 4 now (4 only since the med, it was 3 previous in my vain attempt to stave off getting the infection from my doctor's office).

I think it or the other 30 billion was causing my excess gas. I may end up going back to just 2 and rolling with that.

I've also seen that the guidelines have changed and I'm both paranoid and a planner so we have talked about what potential treatment option I'd try if it came to that (Lord willing that won't happen). Allison (guessing that's what your name is short for), have you tried an FMT? If so, was it successful? If not, was it an option for you that you chose against? Everything I've heard about it seems to make it seem like it's a miraculous treatment so I'm curious what your experience/opinion of it is.

Truly appreciate your responses on this, and it's definitely helpful.

AllisS
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Re: More susceptible or higher relapse chance?

Postby AllisS » Sun Feb 17, 2019 7:57 pm

Patman, no, I didn't need to go as far as having FMT. I was lucky in that my infection responded to vanco (following an unsuccessful course of Flagyl). From all accounts, FMT has had a great success rate for those who have needed it. That said, I'm hoping that other, more palatable alternatives emerge in the not-distant future.

Allis (aka Allison)
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

PatmanMI
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Re: More susceptible or higher relapse chance?

Postby PatmanMI » Sun Feb 17, 2019 8:16 pm

Yeah, I really hope I never need to get that far either. I'm pretty sure I caught it fast so I'm really praying it will be just one course of vanco and not need to do a second pulsed round or dificid. I beat it the first time with Flagyl twice so there's a good chance a better med will knock it out in one, right?

So far I'm 6 doses out of 40, and the only symptoms in having is cramping and the 15+ BMs (as stated before, not sure how this relates to people who don't have IBS-D coming in. As my normal off meds would probably be 8-10 with no meds). I did also have trouble sleeping last night, I don't think it was the fear, I just couldn't shut my mind off it seemed, as the longest sleep stretch I got was about 2 hours (probably got at best only 6 hours total, maybe less). I know this site also won't be indictive of what to fully expect, since most will only reach out to these sites when we're the exception cases and not the rules.

Trying to take it one day at a time, and know it likely won't be until at least day 3 that I'd see any small improvements and prolly day 5 at least for the watery d to subside

Thanks for replying Allis, and I absolutely agree on the better solutions. Really hoping that that phase 3 trial on vaccine works well and can be given to folks like us.

beth22
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Re: More susceptible or higher relapse chance?

Postby beth22 » Sun Feb 17, 2019 11:14 pm

I agree with Allison about your probiotics. Most of them will get killed off by the vancomycin anyway. Florator is a yeast and the vanco will not interfere with it. That is the one most doctors recommend, although I could not tolerate it. It gave me terrible gas and even a rash. I must have some kind of intolerance to yeast. I had to try several probiotics before I found one that did not disagree with me and that actually helped and that was VSL#3, but I only take a small part of a capsule.

I had FMT - actually more than one. It is not a magic cure, although we have had people who not only got rid of their IBS with it, but IBD like Crohn's. I know one poster who said it helped with her IBS. In fact, she was treated with FMT enemas for IBS before the FDA cracked down and said that could no longer be done. If you ever get to that point, and hopefully you won't, it may help.


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