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 ?

@lindac61

Thanks! Yes, my BM’s are definitely not “normal” so that is why I am still so unsure. I am taking S. Boulders and another high potent probiotic every day too. I am hopeful that it is over and just gets better. Good luck to you!

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@lindac61 I also take Florastor or another brand of S. Boulardii every single day. I googled the Dificid coupon but the site that I went to where it said it would be $50 also said that those on Medicare were NOT included in the offer. Not sure why because even with our Medicare and Humana RX plan, my deductible was still almost $1,000. My GI prescribed it through a cancer center pharmacy and they found a place that helps with high RX's so I only had to pay $78. When it was through Walmart, it would have been a little over $1,000 copay.

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@nettecook

@ngorman25 how are you doing?

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@nettecook So far so good but I am still on vancomycin taper. I will finish on Monday. For me, all my relapses happened between 2 and 3 weeks after stopping medication. So, I figure I really won't know if it's working until near Easter. I feel ok now but I have felt this way before each relapse. Time will tell! How are you doing?

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I had cellulitis (hospitalized) in May and then C. Dif in January. Did Vanco and it seemed to work but then got UTI. Finally finally i got into see specialists this week who really knew something bout Diff — Infectious Disease Specialist and GI with a C.Diff specialty. I have mild MGUS (monoclonal gammopahty of unspecified significant — which about 3% of people over 65 have) and mild Rheumatoid Arthritis. Both these specialists said that both of those diseases damage a protein that is important to the immune system — and that they recommended and then the GI offered to do a fecal transplant if I get a relapse which they both thought was pretty inevitable given that my immune system was weak from MGUS and RA. In fact, I may be relapsing now due to antibiotic i took for UTI. In any case, it was the fact that I have these two underlying conditions, which are very common, which seems to have helped me to gain access to FMT. Also I was not told anything about having to pay. I

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@ngorman25

@nettecook So far so good but I am still on vancomycin taper. I will finish on Monday. For me, all my relapses happened between 2 and 3 weeks after stopping medication. So, I figure I really won't know if it's working until near Easter. I feel ok now but I have felt this way before each relapse. Time will tell! How are you doing?

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@ngorman25 Did your doctor want you to continue the Vanco taper AFTER your FMT? I thought that vancomycin also killed the good bacteria. I sure hope the FMT works for you.

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@pines

@ngorman25 Did your doctor want you to continue the Vanco taper AFTER your FMT? I thought that vancomycin also killed the good bacteria. I sure hope the FMT works for you.

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@pines Yes, I only had 4 pills left and take 1 every 3 days.

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@ngorman25

@nettecook So far so good but I am still on vancomycin taper. I will finish on Monday. For me, all my relapses happened between 2 and 3 weeks after stopping medication. So, I figure I really won't know if it's working until near Easter. I feel ok now but I have felt this way before each relapse. Time will tell! How are you doing?

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@ngorman25 I didn’t do Vanco after my FMT. It’s strange that we all have been given different regimens. I’m doing well I think. I have some days of diarrhea but it’s not everyday. It seems different. I think it will be awhile until I’m “normal” but I have Crohn’s Disease so normal is relative. 🤪 I’m glad you are doing well so far!!!!

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@pines

@lindac61 I also take Florastor or another brand of S. Boulardii every single day. I googled the Dificid coupon but the site that I went to where it said it would be $50 also said that those on Medicare were NOT included in the offer. Not sure why because even with our Medicare and Humana RX plan, my deductible was still almost $1,000. My GI prescribed it through a cancer center pharmacy and they found a place that helps with high RX's so I only had to pay $78. When it was through Walmart, it would have been a little over $1,000 copay.

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I am glad you were able to find help with the cost- such a racket it seems!!!

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@nettecook

@ngorman25 I didn’t do Vanco after my FMT. It’s strange that we all have been given different regimens. I’m doing well I think. I have some days of diarrhea but it’s not everyday. It seems different. I think it will be awhile until I’m “normal” but I have Crohn’s Disease so normal is relative. 🤪 I’m glad you are doing well so far!!!!

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@nettecook It's five months today since I took the last Dificid and I still have days with diarrhea. But it's completely different than what it was like during my 4 bouts of Cdiff last year. I'm so happy I found this site and we're able to share so much. I can't think of any place else I would EVER be talking about BM's. 🙂 🙂 I'm happy to hear you're doing better.

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@ngorman25 …So Feb 28 was my FMT. I’m just not feeling that great. I have lots of bloating and cramping. I alternate between constipation and diarrhea( mostly diarrhea) but not C Diff diarrhea. Someone mentioned a bad taste in their mouth and I remember that. I wonder if it is the Vanco? Anyway, waiting to feel normal. Just tired of….I know you all feel the same way.

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@nettecook

@ngorman25 …So Feb 28 was my FMT. I’m just not feeling that great. I have lots of bloating and cramping. I alternate between constipation and diarrhea( mostly diarrhea) but not C Diff diarrhea. Someone mentioned a bad taste in their mouth and I remember that. I wonder if it is the Vanco? Anyway, waiting to feel normal. Just tired of….I know you all feel the same way.

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@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

@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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