C. difficile -are your guts ever normal again ?

Posted by sue6408 @sue6408, Sun, Jan 27 12:57pm

Does anyone know any body that has recovered from c.diff (guts back to pre-c.diff status ) . I have been negative for a year and still have bloating every time I eat anything and sporadic diarrhea. I need maternity clothing to eat and be comfortable. I have 0 appetite since I was initially infected.I am on creon 36,000 . this helps some what with bloating,I take papya&pineapple enzymes not helping, and floraster 2xday not sure about that.I have tried the FODMAP diet, I avoid many foods on that diet. I am seeing an RD, just finished an elimination diet with her. If I eat I bloat there for I am. Bottom line…are my guts ruined forever ?

@pines

@ngorman25 It's been 5 months since I finished the Dificid and I'm still not "normal." I have days that my BM's are not formed. Not the same as Cdiff diarrhea but not anything like the normal BM's prior to Cdiff. I've read on here that some people take a year to be back to normal. Wishing you both well after your FMT's.

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pines@pines I agree with what you said. I think if I am fortunate enough to be free of cdiff, it will be a long time before I am back to the way I was before. Maybe never. All I know is I am taking it one day at a time until I get to the end of May. We shall see.

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@ngorman25

pines@pines I agree with what you said. I think if I am fortunate enough to be free of cdiff, it will be a long time before I am back to the way I was before. Maybe never. All I know is I am taking it one day at a time until I get to the end of May. We shall see.

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@pines @ngorman25 It makes me a little less worried to hear you both are about the same as I am. I sure wish we were “normal” again.

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@nettecook

@pines @ngorman25 It makes me a little less worried to hear you both are about the same as I am. I sure wish we were “normal” again.

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@nettecook It definitely is comforting to know people in the same boat! No doubt about that. Nobody understands what we have gone through and continue to go through. Nobody understands the fear involved. Nobody understands the not knowing what will be next. I am so grateful to have found this website. I always feel better after texting with all of you.

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@ngorman25

@nettecook It definitely is comforting to know people in the same boat! No doubt about that. Nobody understands what we have gone through and continue to go through. Nobody understands the fear involved. Nobody understands the not knowing what will be next. I am so grateful to have found this website. I always feel better after texting with all of you.

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@ngorman25 & @nettecook Yes, it's wonderful to have this site to share our concerns. It surely is "the good, the bad & the ugly" going through Cdiff and recovery. 🙂 I would NEVER feel comfortable talking to people about BM's. 🙂 And no one truly understands unless you've lived through it. 2018 and four bouts of Cdiff was a year I wouldn't wish on my worst enemy. And their is such a fear of relapse. I'm in hopes that all those who have had FMT will be on their way to recovering. I wish I would have taken Deficid early on rather than waiting until my 4th bout. And I hope they find a generic so the price will lower for those who are unable to afford the high co-pay. I was happy to read the post the other day about finding coupons that helped cover the cost. Have a good evening.

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@pines

@ngorman25 & @nettecook Yes, it's wonderful to have this site to share our concerns. It surely is "the good, the bad & the ugly" going through Cdiff and recovery. 🙂 I would NEVER feel comfortable talking to people about BM's. 🙂 And no one truly understands unless you've lived through it. 2018 and four bouts of Cdiff was a year I wouldn't wish on my worst enemy. And their is such a fear of relapse. I'm in hopes that all those who have had FMT will be on their way to recovering. I wish I would have taken Deficid early on rather than waiting until my 4th bout. And I hope they find a generic so the price will lower for those who are unable to afford the high co-pay. I was happy to read the post the other day about finding coupons that helped cover the cost. Have a good evening.

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@pines I checked out the coupon for dificid but unfortunately, I have a Medicare advantage plan and the coupon cannot be used. Hopefully, I won't need dificid but you never know.

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@ngorman25

@pines I checked out the coupon for dificid but unfortunately, I have a Medicare advantage plan and the coupon cannot be used. Hopefully, I won't need dificid but you never know.

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@ngorman25 I found the same thing when I looked. I have Medicare, TransAmerica & Humana RX. So it would not cover me either. I'm fortunate that my GI prescribed Dificid through a cancer center pharmacy where they work with different companies that help with high copays. I went from having to pay over $900 for a copay to just under $100. I had copays at Walmart for vancomycin that were more than what I ended up paying for Dificid. I hope you don't end up needing it. Think positive thoughts.

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I only know one thing that can restore gut health after having contracted c-diff & that is a fecal transplant..it works! I have also read that poop pills are now available. Talk to your Gastro or do some Research. Mayo may even be able to help. Good luck!🙏🏻

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I am wondering if anyone has done an extended pulse on dificid? I know that everyone is different, but I have tried 10 days of vanco and 10 days of dificid only to have it return 10 days after last dose. I suffered with CDIFF for a full year before I went to receive treatment. I'm 47 and overall was healthy. I've heard pros and cons about FMT, I know that I do not want to take vanco again. Thoughts?

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@femalegolfer

I am wondering if anyone has done an extended pulse on dificid? I know that everyone is different, but I have tried 10 days of vanco and 10 days of dificid only to have it return 10 days after last dose. I suffered with CDIFF for a full year before I went to receive treatment. I'm 47 and overall was healthy. I've heard pros and cons about FMT, I know that I do not want to take vanco again. Thoughts?

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And I might add – I have a UTI presently to boot..

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@femalegolfer

And I might add – I have a UTI presently to boot..

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@femalegolfer I did the pulse and taper with vanco but only did the 10 days on dificid. And Cdiff returned within 5 days after taking flagyl and 10 days of vanco. The with vanco taper, it took 3 weeks before I had my 4th relapse. I'm so fortunate that deficit worked for me. And I went for way too long with my first bout of Cdiff before ever seeking treatment. I thought it was the flu for almost a week. And then went another week thinking I had Ecoli from eating romaine lettuce. (That outbreak was going around at the same time.) By the time I went to the doctor, Cdiff had really taken over my entire body. I had a UTI with my 3rd relapse. At the time, I was doing the vanco taper. I took Macrobid. Be careful taking Cipro for UTI's. It'a almost as bad as taking Clindaymcin which I'll NEVER take again.

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@pines All fluoroquinolones and clindamycin are directly linked to cdiff. Other antibiotics can give it to you also.

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@ngorman25

@pines All fluoroquinolones and clindamycin are directly linked to cdiff. Other antibiotics can give it to you also.

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@ngorman25 Yes, I'm very aware of that. However, I never got Cdiff from any other antibiotics prior to taking Clindamycin. And after having the UTI during one episode, I was informed that Macrobid would be the "lesser of two evils" to take for that infection. Macrobid is a nitrofuran and Cipro is a quinolone.

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@pines

@ngorman25 It's been 5 months since I finished the Dificid and I'm still not "normal." I have days that my BM's are not formed. Not the same as Cdiff diarrhea but not anything like the normal BM's prior to Cdiff. I've read on here that some people take a year to be back to normal. Wishing you both well after your FMT's.

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It has been 2 yrs. I am not back to normal yet. Foods that never bothered me now cause extreme bloating. My gastro gave me creon 36,000u/ meal . It stopped the cramping and diarrhea and moderated the bloating. This is an off label use.

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@pines

@ngorman25 Yes, I'm very aware of that. However, I never got Cdiff from any other antibiotics prior to taking Clindamycin. And after having the UTI during one episode, I was informed that Macrobid would be the "lesser of two evils" to take for that infection. Macrobid is a nitrofuran and Cipro is a quinolone.

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@pines I never got cdiff before either from any antibiotic until I took clindamycin. I know about cipro cause I took it once a few years ago and got off it in a few days cause it kept me awake around the clock! I will not take any fluoroquinolones again! They are bad news! Now macrobid I have never heard of.

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@pines My doctor and infectious disease specialist said that the ones listed below are the high risk antibiotics:
* clindomycin
* the class of drug called floraquinolones (there are quite a few if you google)
* the class of drugs called cephalosporins, 2nd and 3rd generation
* amoxycillin
* amoxycillin-clavulnanate (which includes augmenting , Glaxo SmithKline)

Low risk antibiotics she said were
* sulfur drugs
* penicillin

I took Monurol for UTI and so far, 2 weeks out have not relapsed.

I have acid stomach, gas, reflux and turns out two classes of the over the counter meds are reported to increase risk of relapse (google C.diff and the name of the class) . They are:
* the class called proton pump inhibitors
* the class called H2 blockers: includes zantac

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