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 ?

@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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@sandyabbey

I would like to know what colonized means too.

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@sandyabbey. I believe "colonized" means that a person has spores in them even though they do not necessarily have active C.Diff. I believe the CDC website talks about this. I have had a back to back dose of vancomycin, and now test positive. That may be the lag in spores exiting or I may be colonized. Again (I believe) lots of people in U.S. have some spores in them but I should think "colonized" means more. I know i read somewhere that some people are colonized but never get C.Diff.

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What do you all think and do about issue of contagion? I have little grandkids. From what I read it feels like some people say — don't worry about contagion unless you are really actively having diarrhea because only those who are on antibiotics or immune suppressed would get C. Diff. But other things I have read seem to suggest I could pass spores and it is not so easy as don't worry. My friend who is a nurse practitioner with experience of C.diff says that after I no longer have active diarrhea —-as long as I wash my hands with soap and water after every trip to the bathroom and before i touch any food; and not share my plate or utensils with people then i will not pass spores even if have them in me. EPA publishes a list of household products that are effective against c.diff. Google EPA list K and you will see it.

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I was reading in this article, https://cdifffoundation.org/tag/c-difficile-colonization/ that its possible to get from animals and or the use of organic fertilizer. Although I don't use organic fertilizer, I did use a full pickup load of cow shit from a nearby farm in my garden this past year..I'm going to be paranoid of everything now, I bleach everything and wash my hands as much as possible, even if not using the bathroom. Just really stinks for all of us – in every way!

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It means it is in your body and can come back. Google cdiff and colonized for a better understanding

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I just did an informational board for the hospital where I work. Every you stated is true. You must was hand with soap at least 20 seconds and hand sanitizer doesn’t work. Clorox wipes do not work either. I have small grandchildren as well and I am extra cautious with them. We don’t share food or drinks. I don’t believe you can pass by touch unless you didn’t wash hands. I do no let them sleep in my bed. I wash everything with bleach in my bathroom as well as tub. I also change towels at the end of day and keep mine separate in my bathroom from ones used by others if company comes. I may be a little over cautious but I would rather be safe than sorry.

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