1. < Digestive Health

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 | @annapocono | Mar 23, 2019
In reply to @annapocono "I have had one bout of C.Diff and now have a urinary tract infection and today..." + (show)
@annapocono

I have had one bout of C.Diff and now have a urinary tract infection and today had to take an antibiotic. I am really scared I am going to get C. Diff back. What experiences have you all had with using antibiotics after C.Diff?
I also wanted to tell you about a really good set of videos i found on an online journal called Contagion Live. It is a panel discussion among 6 experts on C.Diff, guys who teach at medical schools like Columbia, and Tufts but who also have patients. I learned so much listening to these videos. They are short and each has a topic. You will find them helpful.
Here is the link: https://www.youtube.com/watch?v=p99kQPwpHWM. Write me back if it doesn't work and I'll try again.

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oops, i gave you a link to a healing meditation (which is helpful) but not what I meant. For the videos google "Factors that impact C.Diff recurrence" -CONTAGIONLIVE. they are short and easy to listen to and divided up by topic.

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1 reply
nettecook | @nettecook | Mar 23, 2019
In reply to @annapocono "oops, i gave you a link to a healing meditation (which is helpful) but not what..." + (show)
@annapocono

oops, i gave you a link to a healing meditation (which is helpful) but not what I meant. For the videos google "Factors that impact C.Diff recurrence" -CONTAGIONLIVE. they are short and easy to listen to and divided up by topic.

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@annapocono I found those videos too and found them helpful. I’m glad you posted them for others. I know, I’m scared of getting any sort of infection as well that requires antibiotics😱 I know we are supposed to tell all docs that we have had it so they will choose the least offending one. I think the broad spectrum ones are the riskier ones. I think....

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nettecook | @nettecook | Mar 23, 2019
In reply to @ngorman25 "@nettecook I have never even heard of haldol. All I know is I am so grateful..." + (show)
@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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2 replies
lindac61 | @lindac61 | Mar 27, 2019
In reply to @nettecook "I didn’t do Dificid at all because the copay at the pharmacy was going to be..." + (show)
@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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2 replies
pines | @pines | Mar 27, 2019
In reply to @lindac61 "I found a coupon online for Dificid so I only had to pay $50 instead of..." + (show)
@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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1 reply
lindac61 | @lindac61 | Mar 27, 2019
In reply to @pines "@lindac61 I hope Dificid works for you. I was given it after my 4th bout last..." + (show)
@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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1 reply
pines | @pines | Mar 27, 2019
In reply to @lindac61 "Hi. I am hopeful that it worked but not 100% sure yet. After Vanco I knew..." + (show)
@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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1 reply
lindac61 | @lindac61 | Mar 27, 2019
In reply to @pines "@lindac61 When I just did the 10 days on Vanco, I also knew within 5 days..." + (show)
@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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1 reply
nettecook | @nettecook | Mar 27, 2019
In reply to @lindac61 "I found a coupon online for Dificid so I only had to pay $50 instead of..." + (show)
@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 | @nettecook | Mar 27, 2019
In reply to @nettecook "@ngorman25 I knew of the drug Haldol only because i heard someone taking about it. It..." + (show)
@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.

Jump to this post

@ngorman25 how are you doing?

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