C. difficile – Are your guts ever normal again?

Posted by sue6408 @sue6408, Jan 27, 2019

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 ?

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@annapocono

@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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I'm not sure if you are still checking but I am in NYC and wondering which infection disease and gastro you used. Thank you!

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A friend had cdiff. She was in the hospital a lot. Then she had the fecal implant. She is now back to having lunch with friends and she no longer is bothered by c diff.

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@billchitwood

My husband, Bill (89), was hospitalized for C.Diff last Friday. Got released on Sunday still with uncontrol able diarrhea. At least no longer bloody. This morning said he was doing better.
Understand it is highly contagious. Daughter and I are using Clorox, etc., like crazy people - hand washing every time we turn around and lots of hot showers.
Is there any other preventative things we should be doing?
Bill doesn't want to eat - has lost 20 pounds in past month (also has dementia). I keep putting things in front of him and he'll take a few bites. Doctor has him on Vancomycin. At first they wanted a different pill but we don't have Part D and it was going to cost over $4200! Costco had the Vancomycin for $73 - some places listed it at over $1000!
Understand eggs, cheese, chicken good for diarrhea?
He had been in the hospital and NH a month ago and on antibiotics for UTI at that time. I understand all of those events can trigger C.Diff.
Thank you for suggestions.
He is not a happy camper.

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I lived on rice, pineapple, and boiled chicken for 3 months. Only thing that helped me was finally an FMT. But still has taken 2 years to return to any kind of "normal"

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@mpeters

A friend had cdiff. She was in the hospital a lot. Then she had the fecal implant. She is now back to having lunch with friends and she no longer is bothered by c diff.

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I also had a FMT in June, happy to say IT WORKED!!!! back to normal in 3 weeks.

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May I ask any of you who had a successful FMT, was it by Pill form or Colonoscopy? I was Hospitalized (in Nov/Dec 2020) for 16 days with C-Diff, and have taken the FMT Pills 3 times since to no avail. Just getting over another episode of C-diff currently.
My Infectious Disease Doc wants me to have an FMT via Colonoscopy Route. My Gastro Dr says he doesn't do this. So I was referred to another Gastro Dr and I was contacted by Phone by his office to Register to have it done. I told them at the time I wished to think it over first. I did a few days, and talked to my Infectious Disease Dr before Scheduling this. He highly recommended I have it done, as I have had C-diff over 10 times total. So I contaced the New Gastro Dr office again to try to Schedule the FMT and they said I had refused to have it done so they needed another Referral. I contacted my Inf Disease Dr office and they Resent the Referral 10 days ago. No contact to this point.
Back to my original Question now. Is it worth it to have a Colonoscopy FMT? I am really worn out by this disease. Thanks for your time in reading/responding to my situation.

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@pixie1960

May I ask any of you who had a successful FMT, was it by Pill form or Colonoscopy? I was Hospitalized (in Nov/Dec 2020) for 16 days with C-Diff, and have taken the FMT Pills 3 times since to no avail. Just getting over another episode of C-diff currently.
My Infectious Disease Doc wants me to have an FMT via Colonoscopy Route. My Gastro Dr says he doesn't do this. So I was referred to another Gastro Dr and I was contacted by Phone by his office to Register to have it done. I told them at the time I wished to think it over first. I did a few days, and talked to my Infectious Disease Dr before Scheduling this. He highly recommended I have it done, as I have had C-diff over 10 times total. So I contaced the New Gastro Dr office again to try to Schedule the FMT and they said I had refused to have it done so they needed another Referral. I contacted my Inf Disease Dr office and they Resent the Referral 10 days ago. No contact to this point.
Back to my original Question now. Is it worth it to have a Colonoscopy FMT? I am really worn out by this disease. Thanks for your time in reading/responding to my situation.

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@pixie1960 I had cdiff 4 years ago. Was hospitalized for 8 days. Was put on medication 4 times over 6 months and then was offered the fmt via colonoscopy. I truly believe it saved my life! Although I have never been able to gain back the weight (14 lbs), I have been okay. It was the best decision for me. I was never even told about the pills. If you have any questions, feel free to ask me. Good luck!

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@ngorman25

@pixie1960 I had cdiff 4 years ago. Was hospitalized for 8 days. Was put on medication 4 times over 6 months and then was offered the fmt via colonoscopy. I truly believe it saved my life! Although I have never been able to gain back the weight (14 lbs), I have been okay. It was the best decision for me. I was never even told about the pills. If you have any questions, feel free to ask me. Good luck!

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@ngorman25 It was very kind of you to Reply. Im sorry you've had such a rough time! Yours is a very encouraging experience with an FMT Colonoscopy. I have been on Dificid the Typical 10 day period. Then my Inf Disease Dr put me on an Extended regimen of 1 pill every other day for 28 days. I got better during this time and was offered the FMT Colonoscopy during this same time, and told the Dr I would think it over. I decided to have it done but have been unable to get back in with the Gastro Dr to get it Scheduled. You have encouraged me to keep trying to get this procedure done.
I would like to ask a few Questions, please. (1)-Did you get sick drinking the Prep fot the Colonoscopy? (2)-How long before you could tell a real difference after the FMT (Days, Months, etc?)- ie, no diarhea, stomach roll and churn, and the rest? (3)- Approximately how long were you able to retain the FMT Treatment immediatley following the procedure? (I have MS and my Muscles are weakened from it and from the Recurrent C-diff episodes). I am afraid I wouldnt be able to retain the FMT treatment long enough for it colonize the good bacteria. (4)-Did you have the Procedure and go home the same day? I am 63 and live alone and have some concern due to weight loss and weakness I might not do well if it makes you very sick afterwards and you have to run to Restroom and back for days?
Thank you for the time . I hope you can gain your weight back and I'm glad to hear you are doing ok now. Its a pretty rough road, as you no doubt know! Thank you!

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@pixie1960

@ngorman25 It was very kind of you to Reply. Im sorry you've had such a rough time! Yours is a very encouraging experience with an FMT Colonoscopy. I have been on Dificid the Typical 10 day period. Then my Inf Disease Dr put me on an Extended regimen of 1 pill every other day for 28 days. I got better during this time and was offered the FMT Colonoscopy during this same time, and told the Dr I would think it over. I decided to have it done but have been unable to get back in with the Gastro Dr to get it Scheduled. You have encouraged me to keep trying to get this procedure done.
I would like to ask a few Questions, please. (1)-Did you get sick drinking the Prep fot the Colonoscopy? (2)-How long before you could tell a real difference after the FMT (Days, Months, etc?)- ie, no diarhea, stomach roll and churn, and the rest? (3)- Approximately how long were you able to retain the FMT Treatment immediatley following the procedure? (I have MS and my Muscles are weakened from it and from the Recurrent C-diff episodes). I am afraid I wouldnt be able to retain the FMT treatment long enough for it colonize the good bacteria. (4)-Did you have the Procedure and go home the same day? I am 63 and live alone and have some concern due to weight loss and weakness I might not do well if it makes you very sick afterwards and you have to run to Restroom and back for days?
Thank you for the time . I hope you can gain your weight back and I'm glad to hear you are doing ok now. Its a pretty rough road, as you no doubt know! Thank you!

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@pixie1960 I didn't get physically sick from the prep, but it is a terrible ordeal! I know I lost a lot of the fmt, because I just couldn't hold onto it! But, I guess I retained enough cause I went home the same day and saw an immediate difference! I haven't looked back since.

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@ngorman25

@pixie1960 I didn't get physically sick from the prep, but it is a terrible ordeal! I know I lost a lot of the fmt, because I just couldn't hold onto it! But, I guess I retained enough cause I went home the same day and saw an immediate difference! I haven't looked back since.

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@ngorman25 That sure is encouraging, and it's helpful to be able to talk with someone who has actually been through the actual procedure. I'm so glad you have done well and saw an immediate difference! It would be such a blessing to be completely rid of the c-diff for good!
Do you take any sort of Probiotic now?
Thank you for your time, you have been extremely helpful!

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@pixie1960

@ngorman25 That sure is encouraging, and it's helpful to be able to talk with someone who has actually been through the actual procedure. I'm so glad you have done well and saw an immediate difference! It would be such a blessing to be completely rid of the c-diff for good!
Do you take any sort of Probiotic now?
Thank you for your time, you have been extremely helpful!

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@pixie1960 I alternate 2 different probiotics. One is visbiome, a medical probiotic, a bit expensive. The second one is saccharomyces boulardii. After I had the fmt, my gastro told me I didn't need to keep taking probiotics. But I wasn't convinced and asked my primary doctor and she said to continue. So I have!

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