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 ?

@pibacher

C. Diff. or diarrhea, Crohns. TRY FLORASTOR. Saccharomyces boulardii is a tropical species of yeast first isolated from lychee and mangosteen fruit in 1923 by French scientist Henri Boulard.

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@pibacher My gastroenterologist suggested I take Florastor. I continue to take it or another brand of S. Boulardii every single day. It's the one probiotic that gets through the acid in our stomachs and goes to work in our GI tracts. I have not had a Cdiff relapse since Oct. 2018. Thank the good Lord.

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I also take florastor

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I'm new here. I got C Diff Thanksgivjng Day of 2018. Still fighting it. I had a doc put me on Sulfadiazine (antibiotic) instead if Sulfasalazine for 10 months. I caught it and stopped it on Nov 13. By Thanksgiving day, I had c diff. Here we are in March. First tried Flagyl. Failed. Then Vanco for 14 days. Improved but 3-5 days after stopping, it returned. Did the same course of vanco 3 times with c diff returning very quickly once stopping vanco. Had fecal transplant Feb 28, 2019. Seemed fine until today.. About a week later. Symptomatic again. I guess will do FMT again. What do you all do when you are symptomatic and have you hand to be in someone ekses a home? Do you take your own disinfectant? I feel like a threat everywhere I go. I also have Crohns Disease and RA, as well as chronic migraine. Ugh.. Just tired.

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@nettecook I am sorry to hear how hard it has been — and tiring. That's a lot with Crohns and RA. I have mild RA and my RA doctor told me it would make the inflammation of C.Diff worse.. I had what they called a moderate to severe case and they put me on vancomycin for 20 days after which started me on probiotics. I do probiotic/ fermented foods (yogurt, kefir, sauerkraut, miso , pickles etc) rather than the tablets. My understanding is that the best probiotic pill for C.diff is Florastor. But my doctor said you should not take it while you are taking meds. I stopped meds Feb. 14 and haven't had a relapse. My doctor said that if I did relapse she would refer me to an Infectious Disease Specialist. I am going to go to one in any case to understand all this better and the risks going forward, also the risk of giving it to other people. If you haven't already Google the C. Diff Foundation for information in cleaning and to exposing others. Also you might want to google "EPA List K" for the bleach products that kill C. Diff spores and the amount of time each one takes. I

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@annapocono thank you for your response and very helpful info. I am also allergic to dairy so I have to watch the yogurt etc. I'm complicated. My RA doc is who prescribed the wrong medicine. So frustrating. I was actually thinking about an Infection Disease Specialist to know how to contain this better. My gastroenterologist is who has been treating me and he is great. I just wonder if I need to advice from the infectious disease people. I am going to look at the places on google that you recommended. I hope you do not have a relapse!!!

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@annapocono

@nettecook I am sorry to hear how hard it has been — and tiring. That's a lot with Crohns and RA. I have mild RA and my RA doctor told me it would make the inflammation of C.Diff worse.. I had what they called a moderate to severe case and they put me on vancomycin for 20 days after which started me on probiotics. I do probiotic/ fermented foods (yogurt, kefir, sauerkraut, miso , pickles etc) rather than the tablets. My understanding is that the best probiotic pill for C.diff is Florastor. But my doctor said you should not take it while you are taking meds. I stopped meds Feb. 14 and haven't had a relapse. My doctor said that if I did relapse she would refer me to an Infectious Disease Specialist. I am going to go to one in any case to understand all this better and the risks going forward, also the risk of giving it to other people. If you haven't already Google the C. Diff Foundation for information in cleaning and to exposing others. Also you might want to google "EPA List K" for the bleach products that kill C. Diff spores and the amount of time each one takes. I

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@annapocono did your doctor mean you shouldn't take florastor while you are taking meds, or you shouldn't take any probiotics?

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@nettecook

I'm new here. I got C Diff Thanksgivjng Day of 2018. Still fighting it. I had a doc put me on Sulfadiazine (antibiotic) instead if Sulfasalazine for 10 months. I caught it and stopped it on Nov 13. By Thanksgiving day, I had c diff. Here we are in March. First tried Flagyl. Failed. Then Vanco for 14 days. Improved but 3-5 days after stopping, it returned. Did the same course of vanco 3 times with c diff returning very quickly once stopping vanco. Had fecal transplant Feb 28, 2019. Seemed fine until today.. About a week later. Symptomatic again. I guess will do FMT again. What do you all do when you are symptomatic and have you hand to be in someone ekses a home? Do you take your own disinfectant? I feel like a threat everywhere I go. I also have Crohns Disease and RA, as well as chronic migraine. Ugh.. Just tired.

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That’s terrible. I will pray for you. Someone must have answers. I hate this change in my life. So discouraging.

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@ngorman25

@annapocono did your doctor mean you shouldn't take florastor while you are taking meds, or you shouldn't take any probiotics?

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@ngorman25 My doctor said that the infectious disease specialist said I should only take probiotics after finishing vancomycin. Right after — like on the day I finished vancomycin. But from reading online and talking to a nurse practitioner friend, I gather that there is a lot of controversy and confusion about probiotics — as in how effective they are, how much to take etc. But still take them.

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@losthope

That’s terrible. I will pray for you. Someone must have answers. I hate this change in my life. So discouraging.

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@losthope Have you been to see an Infectious Disease Specialist? I have been told by two doctors that they are the specialist one needs to get the meds right. They are the one who know, or are supposed to know, how the disease works. I am really sorry to hear what is going on with you. It sounds so hard This is such a hard hard disease.

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@annapocono

@ngorman25 My doctor said that the infectious disease specialist said I should only take probiotics after finishing vancomycin. Right after — like on the day I finished vancomycin. But from reading online and talking to a nurse practitioner friend, I gather that there is a lot of controversy and confusion about probiotics — as in how effective they are, how much to take etc. But still take them.

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@annapocono I know what you mean. I was even told that if I had been taking probiotics at the time I took the clindamycin that I might not have even gotten cdiff! I feel like I need to get a medical degree. It makes me think that they have no idea what works. It's very scary and frustrating.

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@femalegolfer

@ngorman25 , if FMT is 90% effective, why are we bothering with more antibiotics? I don't understand why Dr's won't just go that route after one fail of antibiotics? I am on my first round of vanco after being diagnosed on Wednesday, but sadly I lived with Cdiff for the last 8 months or so and never went to the Dr. I would have bad flare ups at times, like when I had strep and was given antibiotics, but I never shared how my bowels were affected with Dr., shame on me I know. So I'm praying that this 10 day treatment will bring me back to normal because I'm so tired of feeling bad. Clindamycin needs to be banned!!

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Amen to that!

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@sue6408

I would go for it. It has a 90% cure rate I read some where. Good luck.

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I had the FMT after being very ill for 4 months. I failed Flagyl, vancomycin & Dificid. It’s been 2 weeks. I had mine through an endoscopy that my dr went past the stomach into the small intestine so that it would be past the stomach acid. I’m still not far enough out to know if it has worked. I sure hope it does. I’m down to 85 pounds & need to get well. I had to try it. I was out of options.

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