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 ?

@sue6408

It has been 2 yrs. I am not back to normal yet. Foods that never bothered me now cause extreme bloating. My gastro gave me creon 36,000u/ meal . It stopped the cramping and diarrhea and moderated the bloating. This is an off label use.

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i stopped vance on feb 14 and slowly slowly got better (not all better but better) and then got a UTI about 2 weeks ago. Took monaural . I haven't relapsed but my stomach is so uncomfortable. I am eating a very restricted diet to try to calm it down. And stools got all messed up too by monaural. Do you all have lots of mucous? Diff have an upset stomach and for how long? this is a hard disease. I find it psychologically hard too. I had a strong fighting spirit at the start but am feeling emotionally worn down by c. Diff.

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@annapocono

i stopped vance on feb 14 and slowly slowly got better (not all better but better) and then got a UTI about 2 weeks ago. Took monaural . I haven't relapsed but my stomach is so uncomfortable. I am eating a very restricted diet to try to calm it down. And stools got all messed up too by monaural. Do you all have lots of mucous? Diff have an upset stomach and for how long? this is a hard disease. I find it psychologically hard too. I had a strong fighting spirit at the start but am feeling emotionally worn down by c. Diff.

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Feel your pain but hang in there. I fight it every day.

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@annapocono

i stopped vance on feb 14 and slowly slowly got better (not all better but better) and then got a UTI about 2 weeks ago. Took monaural . I haven't relapsed but my stomach is so uncomfortable. I am eating a very restricted diet to try to calm it down. And stools got all messed up too by monaural. Do you all have lots of mucous? Diff have an upset stomach and for how long? this is a hard disease. I find it psychologically hard too. I had a strong fighting spirit at the start but am feeling emotionally worn down by c. Diff.

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@annapocono I had a lot of mucous with my first Cdiff episode. I can relate to your being emotionally worn down. I went through four Cdiff bouts and I was ready to cry every time. It's such an "ugly" thing to experience. I've never heard of "monaural" and when I googled it, everything came up sound related. I took Macrobid when I had the UTI during my 3rd bout with Cdiff. Like "losthope" said, hang in there. So many of us know what you're going through.

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@pines

@annapocono I had a lot of mucous with my first Cdiff episode. I can relate to your being emotionally worn down. I went through four Cdiff bouts and I was ready to cry every time. It's such an "ugly" thing to experience. I've never heard of "monaural" and when I googled it, everything came up sound related. I took Macrobid when I had the UTI during my 3rd bout with Cdiff. Like "losthope" said, hang in there. So many of us know what you're going through.

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@annapocono Each one of my 4 relapses were more mucus than diarrhea. It was disgusting. When I mentioned it to my doctor he had nothing to say about it! I'm so glad you mentioned mucus because I thought it was just me! Anyway, I am slowly coming to the conclusion that I will never be"me" again. It's like getting a life sentence. I also am terrified of getting sick and needing an antibiotic. Scares the crap (no pun intended) out of me. I had the fmt a little over 2 weeks ago and feel pretty good. But I have felt pretty good before and then relapsed. If I make it to the end of May, I would be considered "cured". Just have to wait it out. Please continue to update on here as we are all in the same boat and feel the same way as you.

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@annapocono

@pines My doctor and infectious disease specialist said that the ones listed below are the high risk antibiotics:
* clindomycin
* the class of drug called floraquinolones (there are quite a few if you google)
* the class of drugs called cephalosporins, 2nd and 3rd generation
* amoxycillin
* amoxycillin-clavulnanate (which includes augmenting , Glaxo SmithKline)

Low risk antibiotics she said were
* sulfur drugs
* penicillin

I took Monurol for UTI and so far, 2 weeks out have not relapsed.

I have acid stomach, gas, reflux and turns out two classes of the over the counter meds are reported to increase risk of relapse (google C.diff and the name of the class) . They are:
* the class called proton pump inhibitors
* the class called H2 blockers: includes zantac

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I was actually taking a proton pump inhibitor (omeprazole) for 6 mo before and while taking clindamycin. I had been wanting to get off it so when I started having my “issues” before I was diagnosed with c diff I just quit the omeprazole cold turkey. I believe that it can contribute to getting c diff as it blocks the acid production. I have changed my diet since so not having the acid reflux as much. I am 3 weeks post Dificid and so far ok. 🤞 I must say that I worry every day that it is going to come back though.

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@annapocono

@pines My doctor and infectious disease specialist said that the ones listed below are the high risk antibiotics:
* clindomycin
* the class of drug called floraquinolones (there are quite a few if you google)
* the class of drugs called cephalosporins, 2nd and 3rd generation
* amoxycillin
* amoxycillin-clavulnanate (which includes augmenting , Glaxo SmithKline)

Low risk antibiotics she said were
* sulfur drugs
* penicillin

I took Monurol for UTI and so far, 2 weeks out have not relapsed.

I have acid stomach, gas, reflux and turns out two classes of the over the counter meds are reported to increase risk of relapse (google C.diff and the name of the class) . They are:
* the class called proton pump inhibitors
* the class called H2 blockers: includes zantac

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So I was on Sulfasalazine (a low risk drug), but I was on it for 10 months because my doc prescribed it instead of Sulfasalazine which is an anti inflammatory. 🤦‍♀️ So I have c diff for no reason or rather a reason that shouldn’t have happened. It cost me $1200 plus for all the meds and after a letter to my doc, I was reimbursed and the PA who prescribed the wrong med was gone 2 weeks later. Not sure if I was the last straw for her or not. But here’s the thing.. each time I went into her office.. every 3 months, I gave them my list of meds. It was never caught. I thought Sulfadiazine must have been generic for Sulfasalazine and that’s why I didn’t catch the mistake myself. At least I was reimbursed. I guess they decided that was better than a lawsuit. By their negligence, I ended up with c diff and I also have Crohn’s.

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@pines

@annapocono I had a lot of mucous with my first Cdiff episode. I can relate to your being emotionally worn down. I went through four Cdiff bouts and I was ready to cry every time. It's such an "ugly" thing to experience. I've never heard of "monaural" and when I googled it, everything came up sound related. I took Macrobid when I had the UTI during my 3rd bout with Cdiff. Like "losthope" said, hang in there. So many of us know what you're going through.

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@pines Actually i misspelled the UTI med. It was Monural , also known as Fosfomycin. You take one dose. It got rid of the UTI .

Liked by pines

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. @nettecook I feel for all of us with the doctors' lack of knowledge and the mistakes they therefore make but yours is particularly awful. My doctor almost made two mistakes with me. Starting Vanco again when I wasn't having a relapse (i.e. no diarrhea while still testing positive) was the first; the second was suggesting i take zantac for gas pains. It took me one minute on line to find a recent mayo study that showed increased risk of C.Dif relapse for those who take zantac.. My nurse practitioner friend caught the first mistake, almost yelling at me not to take Vancomycin if i wasn't having diarrhea. When I finally got into Infectious Disease specialist and GI with C.Diff specialty things felt much better. They really seemed to know what they were talking about.

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We are so fortunate to have this site to discuss our symptoms and emotional struggles with or after Cdiff. And I can't think of anyplace or anyone else that I would feel comfortable discussing BM's with. It's been five months since I finished Dificid after my 4th bout of Cdiff. And every time I have diarrhea of any type, the worries begin. I need to go in for a colonoscopy and I've been putting off making the appointment. We have to keep thinking positive thoughts and encourage each other through the "crappy days." 🙂

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@annapocono

. @nettecook I feel for all of us with the doctors' lack of knowledge and the mistakes they therefore make but yours is particularly awful. My doctor almost made two mistakes with me. Starting Vanco again when I wasn't having a relapse (i.e. no diarrhea while still testing positive) was the first; the second was suggesting i take zantac for gas pains. It took me one minute on line to find a recent mayo study that showed increased risk of C.Dif relapse for those who take zantac.. My nurse practitioner friend caught the first mistake, almost yelling at me not to take Vancomycin if i wasn't having diarrhea. When I finally got into Infectious Disease specialist and GI with C.Diff specialty things felt much better. They really seemed to know what they were talking about.

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@annapocono I’m glad you got into an infectious disease doc. My gastro doc is actually very good. My rheumatologist’s office is who prescribed the wrong medicine. I could hear the fear in her voice when I told her what I had found out about the medicine mistake.

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@nettecook

@annapocono I’m glad you got into an infectious disease doc. My gastro doc is actually very good. My rheumatologist’s office is who prescribed the wrong medicine. I could hear the fear in her voice when I told her what I had found out about the medicine mistake.

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@nettecook You are very fortunate that you realized you were given the WRONG med. The results could have been much worse. Just sorry it took 10 months on the wrong med before you found out. It makes a person wonder if we should start going to google and look up every med when given a new one. I've sure learned more about different antibiotics since getting Cdiff last year.

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@pines

@nettecook You are very fortunate that you realized you were given the WRONG med. The results could have been much worse. Just sorry it took 10 months on the wrong med before you found out. It makes a person wonder if we should start going to google and look up every med when given a new one. I've sure learned more about different antibiotics since getting Cdiff last year.

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@ nettecook I am definitely googling any med of any type to see if they have any connection with c. Diff.

Liked by pines

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@annapocono

@ nettecook I am definitely googling any med of any type to see if they have any connection with c. Diff.

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I reread my post and I was put on the antibiotic Sulfadiazine instead of Sulfasalazine. They are very close in spelling and you can see how it could slip through the system. Watch those meds I guess!

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@ngorman25

pines@pines I agree with what you said. I think if I am fortunate enough to be free of cdiff, it will be a long time before I am back to the way I was before. Maybe never. All I know is I am taking it one day at a time until I get to the end of May. We shall see.

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Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then I want to know. Since my daughter was born in 1992. I had it for a year on and off. Then got it again after a bout of antibiotics. Then years later I started getting the symptoms really bad with diarrhea and bad cramping for weeks on end. The tests were Negative which I could not believe. I would be put on Flagyl and sooner or later it would go away. This was three years of suffering with this. Running to the bathroom after eating and always needing to know where the bathrooms were near. Finally within the last month after months of on and off symptoms which I was told I most likely have IBS, I thought well I have to stop this diarrhea so I started taking Imodium. Total mistake. I knew in my own mind I had CDiff but since it kept coming back neg I went with the IBS. Total difference though between IBS is people do not go through the night. I was going about 18 to 20 times a day and night. . I was exhausted and getting very sick. Fever. Etc Felt like I had the flu. Taking the Imodium made CDiff go crazy. Went to ER and they dismissed it as the flu. Well, that was enough, as I was suffering intensely with a 102 to 103 fever for weeks. With the worst pain and diarrhea. Finally my dr said go to Orlando Health Hospital, ASAP. I walked in feeling quite sick and thought I am either going to die because they are Not getting positive test results and then they don’t treat or these people are going to help me. I had had it. Finally, the wonderful ER doc sent me up to cat scan for a scan of my colon. Then he wanted to culture of my stool which was what I would refer to green tea of the worst kind. The doc came quickly innafter the tests and said you have a bad case of colitis with CDiff and you are being admitted to critical care. Finally the test came back positive. Since I have chronic CDiff often times the tests come back negative. They put me on Flagyl and Vanco right away. I was vomiting everything I ate and still going about 10 times an hour. Horrible. After almost two weeks in the hospital I was able to eat a little which is only carb type food, everything liquid I would throw up right away. Bread stayed down. Went home on vanco now on for three weeks. Just now functioning more normal but still not perfect. I know once I go off this vanco the CDiff will return. So I have opted for the Fecal transplant. My docs have all recommended it and I am now in the first part of the process of getting ready for it. I have read of the amazing success. But wanted to ask those who have had it have you had any weight gain the transplant!!!! I would love to hear from people who have done this. I am super excited to know there is a cure as I have been suffering for a long time with many episodes of long term hanging in bathrooms and being in chronic pain. Not my favorite place to be. Let alone having to eat almost nothing to try and feel better. Thanks for any feedback and I truly feel for those who have to endure the horrible world of CDiff. Best of luck to all as there is help out there.

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@suzannedee

Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then I want to know. Since my daughter was born in 1992. I had it for a year on and off. Then got it again after a bout of antibiotics. Then years later I started getting the symptoms really bad with diarrhea and bad cramping for weeks on end. The tests were Negative which I could not believe. I would be put on Flagyl and sooner or later it would go away. This was three years of suffering with this. Running to the bathroom after eating and always needing to know where the bathrooms were near. Finally within the last month after months of on and off symptoms which I was told I most likely have IBS, I thought well I have to stop this diarrhea so I started taking Imodium. Total mistake. I knew in my own mind I had CDiff but since it kept coming back neg I went with the IBS. Total difference though between IBS is people do not go through the night. I was going about 18 to 20 times a day and night. . I was exhausted and getting very sick. Fever. Etc Felt like I had the flu. Taking the Imodium made CDiff go crazy. Went to ER and they dismissed it as the flu. Well, that was enough, as I was suffering intensely with a 102 to 103 fever for weeks. With the worst pain and diarrhea. Finally my dr said go to Orlando Health Hospital, ASAP. I walked in feeling quite sick and thought I am either going to die because they are Not getting positive test results and then they don’t treat or these people are going to help me. I had had it. Finally, the wonderful ER doc sent me up to cat scan for a scan of my colon. Then he wanted to culture of my stool which was what I would refer to green tea of the worst kind. The doc came quickly innafter the tests and said you have a bad case of colitis with CDiff and you are being admitted to critical care. Finally the test came back positive. Since I have chronic CDiff often times the tests come back negative. They put me on Flagyl and Vanco right away. I was vomiting everything I ate and still going about 10 times an hour. Horrible. After almost two weeks in the hospital I was able to eat a little which is only carb type food, everything liquid I would throw up right away. Bread stayed down. Went home on vanco now on for three weeks. Just now functioning more normal but still not perfect. I know once I go off this vanco the CDiff will return. So I have opted for the Fecal transplant. My docs have all recommended it and I am now in the first part of the process of getting ready for it. I have read of the amazing success. But wanted to ask those who have had it have you had any weight gain the transplant!!!! I would love to hear from people who have done this. I am super excited to know there is a cure as I have been suffering for a long time with many episodes of long term hanging in bathrooms and being in chronic pain. Not my favorite place to be. Let alone having to eat almost nothing to try and feel better. Thanks for any feedback and I truly feel for those who have to endure the horrible world of CDiff. Best of luck to all as there is help out there.

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@suzannedee Hi, suzannedee, today marks 4 weeks post fmt. I wish I had words of encouragement for you, but I don't! Up until two days ago, I felt really good. But on Wednesday night I started having some mucus discharge. I am still having a lot of mucus and know I have to contact my gastro doctor. I am terrified! I haven't even mentioned it to my family yet. I am so done.

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