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

That’s terrible. I will pray for you. Someone must have answers. I hate this change in my life. So discouraging.

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@losthope Have you been to see an Infectious Disease Specialist? I have been told by two doctors that they are the specialist one needs to get the meds right. They are the one who know, or are supposed to know, how the disease works. I am really sorry to hear what is going on with you. It sounds so hard This is such a hard hard disease.

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@annapocono

@ngorman25 My doctor said that the infectious disease specialist said I should only take probiotics after finishing vancomycin. Right after — like on the day I finished vancomycin. But from reading online and talking to a nurse practitioner friend, I gather that there is a lot of controversy and confusion about probiotics — as in how effective they are, how much to take etc. But still take them.

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@annapocono I know what you mean. I was even told that if I had been taking probiotics at the time I took the clindamycin that I might not have even gotten cdiff! I feel like I need to get a medical degree. It makes me think that they have no idea what works. It's very scary and frustrating.

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@femalegolfer

@ngorman25 , if FMT is 90% effective, why are we bothering with more antibiotics? I don't understand why Dr's won't just go that route after one fail of antibiotics? I am on my first round of vanco after being diagnosed on Wednesday, but sadly I lived with Cdiff for the last 8 months or so and never went to the Dr. I would have bad flare ups at times, like when I had strep and was given antibiotics, but I never shared how my bowels were affected with Dr., shame on me I know. So I'm praying that this 10 day treatment will bring me back to normal because I'm so tired of feeling bad. Clindamycin needs to be banned!!

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Amen to that!

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@sue6408

I would go for it. It has a 90% cure rate I read some where. Good luck.

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I had the FMT after being very ill for 4 months. I failed Flagyl, vancomycin & Dificid. It’s been 2 weeks. I had mine through an endoscopy that my dr went past the stomach into the small intestine so that it would be past the stomach acid. I’m still not far enough out to know if it has worked. I sure hope it does. I’m down to 85 pounds & need to get well. I had to try it. I was out of options.

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@sandyabbey

I had the FMT after being very ill for 4 months. I failed Flagyl, vancomycin & Dificid. It’s been 2 weeks. I had mine through an endoscopy that my dr went past the stomach into the small intestine so that it would be past the stomach acid. I’m still not far enough out to know if it has worked. I sure hope it does. I’m down to 85 pounds & need to get well. I had to try it. I was out of options.

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@sandyabbey I have been sick since September. I also weigh 87 pounds. My fmt via colonoscopy is next Monday, March 25. I am dreading it! I have very little faith that this will do it. I don't think I will ever be rid of it. I am ready to give up.

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@ngorman25

@sandyabbey I have been sick since September. I also weigh 87 pounds. My fmt via colonoscopy is next Monday, March 25. I am dreading it! I have very little faith that this will do it. I don't think I will ever be rid of it. I am ready to give up.

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My GI told me to take Florastor but not to take it with the Vancomycin. He said to wait TWO hour after taking the RX and then take it. I did the same thing with my 4th Cdiff bout while I was taking Dificid.. That was last October and so far I'm doing okay. I do have days when I have a loose BM, especially after I eat a lot of salad or cabbage. My heart goes out to all of you still dealing with this terrible thing. In 2018, I was sick with it from April to October. All because I took Clindamycin. As far as the weight goes, I put back on everything I had lost between Thanksgiving and Christmas. I wish I could have kept it off. But I don't want that kind of diet ever again.

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@ngorman25

@sandyabbey I have been sick since September. I also weigh 87 pounds. My fmt via colonoscopy is next Monday, March 25. I am dreading it! I have very little faith that this will do it. I don't think I will ever be rid of it. I am ready to give up.

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I feel your pain but please don’t give up. I am still fighting the battle and I feel the same some days. I also work around cancer patients and I feel like I could have it worse but pray I never do. Cdiff is definitely a terrible disease and it needs to be studied more to improve the treatment. God bless you. Prayers sent

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@losthope

I feel your pain but please don’t give up. I am still fighting the battle and I feel the same some days. I also work around cancer patients and I feel like I could have it worse but pray I never do. Cdiff is definitely a terrible disease and it needs to be studied more to improve the treatment. God bless you. Prayers sent

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@losthope Sometimes I think if some of the doctors got this, I bet we would see a big change in treating it!

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@sandyabbey

I had the FMT after being very ill for 4 months. I failed Flagyl, vancomycin & Dificid. It’s been 2 weeks. I had mine through an endoscopy that my dr went past the stomach into the small intestine so that it would be past the stomach acid. I’m still not far enough out to know if it has worked. I sure hope it does. I’m down to 85 pounds & need to get well. I had to try it. I was out of options.

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Was it expensive or hard to get a prior auth from insurance

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@annapocono

@losthope Have you been to see an Infectious Disease Specialist? I have been told by two doctors that they are the specialist one needs to get the meds right. They are the one who know, or are supposed to know, how the disease works. I am really sorry to hear what is going on with you. It sounds so hard This is such a hard hard disease.

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I did go to infectious disease doctor she said my issues are no cdiff. Has anyone else felt like they have a knot in the middle left side of their abdomen? I no longer have diarrhea but have days when I go to the bathroom 6 to 8 times a day. I am still losing weight and have a nawing feeling most of the time. They want me to have another colonoscopy and the thought of the prep makes me sick. I am so frustrated. This will be my second one in 4 months plus 4 ct scans. I have had so many tests done with only one thing showing up a thickening in my colon. Anyone else having weird issues

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Well, I was scheduled for fmt via colonoscopy for Monday, March 25. This past Monday, March 18, doctor's office cancelled Monday and moved the procedure to this Friday, March 22. I had to call my daughter and ask her to take off work Friday. She already took off Monday! I just happened to call my insurance to get an idea of what my copay will be. The girl tells me that I need "prior authorization"! Holy crap! I called doctor's office at 2pm today and left VM that if I don't have authorization by 5 today, the colonoscopy would be off! Got a call at 3pm today telling me they got authorization! Nothing like the 11th hour. My nerves are shot! My anxiety is through the roof! If this doesn't work, I don't know what I will do but I don't think I will do this again. Now I get to do the colonoscopy prep tomorrow​. So fed up.

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@ngorman25

Well, I was scheduled for fmt via colonoscopy for Monday, March 25. This past Monday, March 18, doctor's office cancelled Monday and moved the procedure to this Friday, March 22. I had to call my daughter and ask her to take off work Friday. She already took off Monday! I just happened to call my insurance to get an idea of what my copay will be. The girl tells me that I need "prior authorization"! Holy crap! I called doctor's office at 2pm today and left VM that if I don't have authorization by 5 today, the colonoscopy would be off! Got a call at 3pm today telling me they got authorization! Nothing like the 11th hour. My nerves are shot! My anxiety is through the roof! If this doesn't work, I don't know what I will do but I don't think I will do this again. Now I get to do the colonoscopy prep tomorrow​. So fed up.

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@ngorman25 I sure hope the FMT works for you. I guess I'm one of the fortunate ones that Dificid worked for. But I remember how upset I would get after Flagyl and two rounds of Vancomycin didn't work. It seems like from April to the end of October of 2018 was such a depressing and debilitating time for me. People that have never had Cdiff just don't understand what it does to the body both physically AND mentally. Just the testing and waiting for results, plus I ended up with a UTI during one of the Cdiff bouts. And worrying about taking another antibiotic for the UTI …. the list goes on and on. My heart goes out to all of you that are still dealing with Cdiff.

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@pines

@ngorman25 I sure hope the FMT works for you. I guess I'm one of the fortunate ones that Dificid worked for. But I remember how upset I would get after Flagyl and two rounds of Vancomycin didn't work. It seems like from April to the end of October of 2018 was such a depressing and debilitating time for me. People that have never had Cdiff just don't understand what it does to the body both physically AND mentally. Just the testing and waiting for results, plus I ended up with a UTI during one of the Cdiff bouts. And worrying about taking another antibiotic for the UTI …. the list goes on and on. My heart goes out to all of you that are still dealing with Cdiff.

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@pines You know nobody does understand this at all. I think it's because it's been kept a secret by the drug companies. If this doesn't work, I don't know what I will do.

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@ngorman25

Well, I was scheduled for fmt via colonoscopy for Monday, March 25. This past Monday, March 18, doctor's office cancelled Monday and moved the procedure to this Friday, March 22. I had to call my daughter and ask her to take off work Friday. She already took off Monday! I just happened to call my insurance to get an idea of what my copay will be. The girl tells me that I need "prior authorization"! Holy crap! I called doctor's office at 2pm today and left VM that if I don't have authorization by 5 today, the colonoscopy would be off! Got a call at 3pm today telling me they got authorization! Nothing like the 11th hour. My nerves are shot! My anxiety is through the roof! If this doesn't work, I don't know what I will do but I don't think I will do this again. Now I get to do the colonoscopy prep tomorrow​. So fed up.

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Good luck

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@losthope Thx! I'm going to need it!

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