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 ?

@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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Prayers 🙏🏻🙏🏻

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@sandyabbey

@pines. I’ve been finished with my Dificid for 7 days now. I’m so praying that I’m going to make it this time. I have had 3 relapses. 2 from Flagyl & the last one from vancomycin. I went 10 days off the vancomycin & thought I was ok, then I relapsed I was so sick I was taken to the hospital in am ambulance bevause I was so weak I couldn’t stand of lift my arms. I felt better after the IV’s, but was still too weak to even go anywhere within help for over a month. They put me on Dificid then. I’m 7 days finished it & my stomach still doesn’t feel right. I’m praying that it’s just part of the healing process. I haven’t had diarrhea t all. I did have 3 normal stools at first & now it seems like I have to go & it takes forever. I do go but it’s not very much & it’s small. I hope that’s not a bad sign. If I relapse again I’ll have to have the FMT transplant. I’m nervous because I’m down to 85 pounds. I was tiny to begin with. I’ve lost 25 pou in 2 mknths of this awful thing. The drug companies should be ashamed for chatgimg people thus astronomical amount for Dificid. It was 4400.00. My insurance paid it all but 1300.00. That’s horrible. I had to have it though. We are on social security & had to dip into our savings to get it. I just pray I’m ok now. I go to my GI on Friday. I hope I don’t relapse before then.

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Prayers for you, none of this is easy and glad we have this forum to turn to when we feel hopeless…hugs~~

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@sandyabbey

@pines. I’ve been finished with my Dificid for 7 days now. I’m so praying that I’m going to make it this time. I have had 3 relapses. 2 from Flagyl & the last one from vancomycin. I went 10 days off the vancomycin & thought I was ok, then I relapsed I was so sick I was taken to the hospital in am ambulance bevause I was so weak I couldn’t stand of lift my arms. I felt better after the IV’s, but was still too weak to even go anywhere within help for over a month. They put me on Dificid then. I’m 7 days finished it & my stomach still doesn’t feel right. I’m praying that it’s just part of the healing process. I haven’t had diarrhea t all. I did have 3 normal stools at first & now it seems like I have to go & it takes forever. I do go but it’s not very much & it’s small. I hope that’s not a bad sign. If I relapse again I’ll have to have the FMT transplant. I’m nervous because I’m down to 85 pounds. I was tiny to begin with. I’ve lost 25 pou in 2 mknths of this awful thing. The drug companies should be ashamed for chatgimg people thus astronomical amount for Dificid. It was 4400.00. My insurance paid it all but 1300.00. That’s horrible. I had to have it though. We are on social security & had to dip into our savings to get it. I just pray I’m ok now. I go to my GI on Friday. I hope I don’t relapse before then.

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@sandyabbey I was in hopes you would give us an update after finishing the Dificid. I agree with you regarding the cost. I could have taken it after my first bout of Cdiff when the Flagyl didn't work. But I decided, because of the cost, to go with Vancomycin. And after doing 10 days on Vanco and then another relapse and doing the Vanco taper, I finally said enough and I'll pay the Dificid high price. Our insurance paid all but about $1,000. Terrible. But they say it's because it's a new drug and is only used for C.diff. I finished the Dificid on Oct. 26th and have not had a relapse. I knock on wood every time I say that. I now need to make an appointment for a colonoscopy. I'm worried about doing the cleaning and going through the process. And like you, if I have another relapse, I'll do the FMT. 2018 is a year I'm happy to put behind me. 🙂

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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Its sad that we are forced to pay such high prices for curing C Diff. Especially when the return rate is so high. But like you all that matters is getting well and staying well.

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@pines

@sandyabbey I was in hopes you would give us an update after finishing the Dificid. I agree with you regarding the cost. I could have taken it after my first bout of Cdiff when the Flagyl didn't work. But I decided, because of the cost, to go with Vancomycin. And after doing 10 days on Vanco and then another relapse and doing the Vanco taper, I finally said enough and I'll pay the Dificid high price. Our insurance paid all but about $1,000. Terrible. But they say it's because it's a new drug and is only used for C.diff. I finished the Dificid on Oct. 26th and have not had a relapse. I knock on wood every time I say that. I now need to make an appointment for a colonoscopy. I'm worried about doing the cleaning and going through the process. And like you, if I have another relapse, I'll do the FMT. 2018 is a year I'm happy to put behind me. 🙂

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Did you have to test again for cdiff before your dr ordered it. I am battling with mine because I haven’t had a total relapse yet. I am still having frequent bowel movements and irritation so I am praying getting better but not optimistic. I have leaking and have to wipe multiple times even when not having a bowel movements

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@losthope

Did you have to test again for cdiff before your dr ordered it. I am battling with mine because I haven’t had a total relapse yet. I am still having frequent bowel movements and irritation so I am praying getting better but not optimistic. I have leaking and have to wipe multiple times even when not having a bowel movements

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@losthope Yes, I had to have a current C.diff test positive before my doctor ordered Dificid. And my insurance also asked if I had tried Vancomycin before they would approve it.

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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I am praying for you. I am on a Vancomycin taper now after a 3rd relapse. You are not alone!

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@denisemarys

I am praying for you. I am on a Vancomycin taper now after a 3rd relapse. You are not alone!

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@denisemarys I also did the Vanco taper after my third relapse. Not sure how long you're doing it. I was five or six weeks total and also started taking Florastor as suggested by my GI. After finishing it, I was good for 3 weeks before my 4th relapse. I was then given Dificid for ten days. I finished that on Oct. 26th. I have not had a relapse since finishing the Dificid. It's really expensive and my insurance wouldn't cover it until I had tried others meds. I did Flagyl for 10 days, Vanco for 10 days, Vanco taper and then Deficid. I've never gone through anything like this in my life. And it all started with taking Clindamycin for a sinus infection. I've had three back surgeries and those recoveries were a piece of cake compared to C.diff. I'm happy I found this site where others can share and as you said, "you are not alone." I pray the Vanco taper works for you.

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@pines

@denisemarys I also did the Vanco taper after my third relapse. Not sure how long you're doing it. I was five or six weeks total and also started taking Florastor as suggested by my GI. After finishing it, I was good for 3 weeks before my 4th relapse. I was then given Dificid for ten days. I finished that on Oct. 26th. I have not had a relapse since finishing the Dificid. It's really expensive and my insurance wouldn't cover it until I had tried others meds. I did Flagyl for 10 days, Vanco for 10 days, Vanco taper and then Deficid. I've never gone through anything like this in my life. And it all started with taking Clindamycin for a sinus infection. I've had three back surgeries and those recoveries were a piece of cake compared to C.diff. I'm happy I found this site where others can share and as you said, "you are not alone." I pray the Vanco taper works for you.

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I agree!! Its nice to share with people who get it.. Its a horrible way to live and I wouldn't wish this C DIFF on my worst enemy…

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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It is the worst. I too would not wish this on my worst enemy. I only hope it ends soon

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@ngarriso

I have been through this for 2 years. Praying for it to be over soon

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Good news from my doctor. No return of CDiff!!

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@ngarriso

Good news from my doctor. No return of CDiff!!

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Still having a colonoscopy but I am so happy to be CDiff clear

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