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 ?

@ngorman25

@nettecook I have never even heard of haldol. All I know is I am so grateful I found this website and some wonderful people because I don't know about any of you, but everyone I know cannot begin to understand this life threatening disease. This group has saved my sanity (or what's left of it!) I know I can ask any questions and text about any parts of this. I have learned a great deal from all of you by your experiences. Thank you! Will definitely keep in touch with all of you and let you know how I am doing.

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@ngorman25 I knew of the drug Haldol only because i heard someone taking about it. It is a strong psychiatric drug. When I was coming out of anesthesia, and I heard the doc say Haldol, I was concerned. However, I have a friend in the medical field and she said it’s not uncommon for sedation. They do give it to patients who need strong psychiatric drugs, but for the purpose of sedating them. That was my understanding.

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@nettecook

I didn’t do Dificid at all because the copay at the pharmacy was going to be between $1000-1500 for 14 days. I did Flagyl (useless) then Vanco 3x, then FMT.

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I found a coupon online for Dificid so I only had to pay $50 instead of the $1400 my ins co pay would have been. I just googled and found it.

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@lindac61

I found a coupon online for Dificid so I only had to pay $50 instead of the $1400 my ins co pay would have been. I just googled and found it.

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@lindac61 I hope Dificid works for you. I was given it after my 4th bout last October and it worked for me while Flagyl and Vancomycin did not. What pharmacy did you use? I'm not sure all pharmacies will accept the coupon.

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@pines

@lindac61 I hope Dificid works for you. I was given it after my 4th bout last October and it worked for me while Flagyl and Vancomycin did not. What pharmacy did you use? I'm not sure all pharmacies will accept the coupon.

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Hi. I am hopeful that it worked but not 100% sure yet. After Vanco I knew it did not work within 4 days. It has been a week now 🤞
I used CVS and they had no problem with the coupon.

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@lindac61

Hi. I am hopeful that it worked but not 100% sure yet. After Vanco I knew it did not work within 4 days. It has been a week now 🤞
I used CVS and they had no problem with the coupon.

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@lindac61 When I just did the 10 days on Vanco, I also knew within 5 days that it didn't work. I then did the Vanco pulse and taper for 6 weeks. I went for 3 weeks after I finished that before my 4th relapse. I took my last Dificid on October 26, 2018. I have not relapsed. Although my BM's are nothing like before Diff. I think it will take many months before I'm back to what I considered "normal". I'm sure not ever constipated. Wishing you well.

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@pines

@lindac61 When I just did the 10 days on Vanco, I also knew within 5 days that it didn't work. I then did the Vanco pulse and taper for 6 weeks. I went for 3 weeks after I finished that before my 4th relapse. I took my last Dificid on October 26, 2018. I have not relapsed. Although my BM's are nothing like before Diff. I think it will take many months before I'm back to what I considered "normal". I'm sure not ever constipated. Wishing you well.

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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 found a coupon online for Dificid so I only had to pay $50 instead of the $1400 my ins co pay would have been. I just googled and found it.

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@lindac61 That’s amazing that you found the coupon!

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@nettecook

@ngorman25 I knew of the drug Haldol only because i heard someone taking about it. It is a strong psychiatric drug. When I was coming out of anesthesia, and I heard the doc say Haldol, I was concerned. However, I have a friend in the medical field and she said it’s not uncommon for sedation. They do give it to patients who need strong psychiatric drugs, but for the purpose of sedating them. That was my understanding.

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@ngorman25 how are you doing?

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@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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