C. difficile -are your guts ever normal again ?

Posted by sue6408 @sue6408, Sun, Jan 27 12:57pm

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 ?

@losthope

I am in a similar situation. Had cdiff since September. Have Ben on vancomycin an flora stir for a while. Keep feeling like a kno in my side. Went to infectious disease doctor and she said my symptoms not cdiff had two ct scans told mild colitis. Put me on questran not helping. My stomach is hungry but I don’t want to eat because every morning I get up an have a minimum of 5 bowel move. I am tired and hungry all the time. I just want my life back no one gets it they look at me like no big deal. Bu cdiff USA life changing disease. Anyone have any does that have worked. Has anyone gotten better. I am withering away 24pounds so far😓😓😓

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After your vanc treatment ,did you have a stool culture done to be sure the c.diff was gone ?

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Can’t have a test unless watery stools and it will come back positive anyway where’s I am colonized

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@sue6408

After your vanc treatment ,did you have a stool culture done to be sure the c.diff was gone ?

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Yes , it came back negative , Thank God.

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@gfpp

Yes , it came back negative , Thank God.

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Did you get a diagnosis of ulcerative colitis ?

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How many members in here was prescribed Dificid and what were your side effects and effectiveness with the 10 day supply?

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@losthope

Can’t have a test unless watery stools and it will come back positive anyway where’s I am colonized

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@losthope What do you mean yours is colonized?

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@femalegolfer

How many members in here was prescribed Dificid and what were your side effects and effectiveness with the 10 day supply?

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@femalegolfer I took Dificid last October, 2018 and have NOT relapsed since taking it after my 4th bout of Cdiff. I wish I would have taken in after my second relapse instead of being sick and dealing with Cdiff for six months. I know it's expensive but it worked for me.

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@sue6408

Did you get a diagnosis of ulcerative colitis ?

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No

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@femalegolfer

@losthope What do you mean yours is colonized?

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Because I had it for a long time undiagnosed I have a 99% chance that I am colonizef

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@losthope

Because I had it for a long time undiagnosed I have a 99% chance that I am colonizef

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@losthope – how long did you go undiagnosed? I went almost a full year…But the Dr. has never mentioned anything about being colonized – so just curious.

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3 months. I am not that most people who have cdiff willl test positive for a long time after having. I went to a specialist in infectious disease.

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@ngorman25

So I am wondering if anyone here has had the fmt? I am headed in that direction after having had my 4th round of antibiotics. According to my gastro doctor, that is the next step. He says it has a 90% cure rate. Anyone with thoughts?

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I just had my first FMT a week ago after failure of Flagyl, vancomycin & Dificid. I feel bloated if I eat even a small amount. It doesn’t show right now because I lost down to 85. I’ve been sick since October. Taken to the hospital once by ambulance. I just feel full easily. My problem is that when I’m clear before a relapse I go for 3-4 days without a BM. Only thing is that if they tell me to take something it gives me diarrhea. Right now at just a week from my FMT I can’t take anything of any kind without clearing it by my GI. He’s great thought & has tried hard to get me well. Cdiff is a monster that consumes you. I hope I don’t relapse after this FMT. He said lots had to have another one. He’s hoping I’m going to ne clear. I sure hope so. I have had no life since I got this.

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@femalegolfer

How many members in here was prescribed Dificid and what were your side effects and effectiveness with the 10 day supply?

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I took Dificid after failing Flagyl & vancomycin. I was all good for 32 days then relapsed again. I just had an FMT last week. I’m so praying I’m over it. It has consumed my life. It’s such a monster & it’s so hard to deal with.

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@femalegolfer

@losthope – how long did you go undiagnosed? I went almost a full year…But the Dr. has never mentioned anything about being colonized – so just curious.

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I would like to know what colonized means too.

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@sandyabbey

I just had my first FMT a week ago after failure of Flagyl, vancomycin & Dificid. I feel bloated if I eat even a small amount. It doesn’t show right now because I lost down to 85. I’ve been sick since October. Taken to the hospital once by ambulance. I just feel full easily. My problem is that when I’m clear before a relapse I go for 3-4 days without a BM. Only thing is that if they tell me to take something it gives me diarrhea. Right now at just a week from my FMT I can’t take anything of any kind without clearing it by my GI. He’s great thought & has tried hard to get me well. Cdiff is a monster that consumes you. I hope I don’t relapse after this FMT. He said lots had to have another one. He’s hoping I’m going to ne clear. I sure hope so. I have had no life since I got this.

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@sandyabbey When I asked my doctor last week what happens if the fmt doesn't work?, He answered "we do it again"! Definitely not what I wanted to hear. In reading a lot about cdiff, I read that more women get it than men. I wonder if it was reversed, if we all would have heard of it before and if a whole lot more would be done to have a cure. Sorry, if this sounds sexist, but it's the way I really feel.

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