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 ?

Sue, I contracted c-diff in 2011 and have had 4 positive stool cultures for this. In and out of the hospital and given large doses of Vancomycin and Flagyl intravenously. Had 6 inches of my sigmoid colon removed and have had GI symptoms ever since. As you mentioned, bloating and a lot of discomfort under my lower ribs on both sides. I have been to several GI specialists here in New York State as well as Cleveland Clinic. After multiple medications, endoscopies and testing, everyone seems "stumped". Now being treated for a fungal infection per Cleveland Clinic. Not getting any better and have little in the way of "quality of life". I know first hand how frustrating it is not to be getting better and wonder if I will have to suffer forever. I blame the c-diff for the start of my symptoms and also the aggressive IV antibiotics given over and over. I feel the antibiotics have caused nerve damage in my stomach and also mouth burning. I am astounded that I can not find a doctor that knows how to treat this or even cares. Best of luck to you with you struggle to get your health back.

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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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I hope the FMT works for you. Keep us posted. Ask your doc about taking Lomotil or Imodium prior to the procedure at the hospital. I was given Imodium after and “leaked” a little. I wonder if I had taken it before if it would have kept it ALL in. Praying now this is successful for you.

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@nettecook

I hope the FMT works for you. Keep us posted. Ask your doc about taking Lomotil or Imodium prior to the procedure at the hospital. I was given Imodium after and “leaked” a little. I wonder if I had taken it before if it would have kept it ALL in. Praying now this is successful for you.

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@nettecook How long ago did you get the fmt? Has it been successful? I haven't started the prep yet today and I already feel nauseous! Trying to calm myself down. I will definitely post here as soon as I can. Thank you for your support!

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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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@ngnorman25. I had 4 relapses of cidiff starting in October after clindamycin for a sinus infection. I got sick a few days after finishing. My pcp gave me Flagyl. I got better in a few days, but relapsed after a week. He gave me another round & that time. Then he sent me to my GI. I should have gone there to begin with, but actually I wasn’t sure that was it at first. I was given vancomycin at that time. I got better again & then 10 days after finishing vancomycin I had a bad relapse & had to be taken by ambulance to the ER. I was given IV fluids in the ambulance & then more at the hospital. I was positive for Cdiff again. I was given Deficid this time & went 32 days. I was so excited because I thought after all this time I was going to be ok. I had lost 20 pounds & that put me at a dangerous 85 pounds. My GI gave me 10 days of vancomycin to get me to a point to have an FMT. In the meantime he did a sigmoidoscopy & did 5 biopsies & they were all positive. Then I was told to get off the vancomycin 2 days before the FMT. He did mine through an endoscopy past my stomach into the small intestine. I have an extra long colon & he had a hard time during my last colonoscopy so he wanted to try the endoscopy way. He said it would go all the way through my intestine that way too. I’m 3 weeks out so we don’t know if it worked yet. He’s going to test 8 weeks out unless I get sick before then. I’m better, but I still have trouble with foods. I think I’m afraid to venture out. I don’t want to mess up this FMT because I’ll have to have another one, this time via colonoscopy. My gut is definitely messed up at the moment. I get bloated easily & have stools at different times. Sometimes it’s just a little & then a little more. Lots of times I feel pressure like I need to go & it’s a tiny amount of loose stool. I’m taking a probiotic & drinking Kefir & eating yogurt. I’m definitely not right yet & wonder if I ever will be.

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@sandyabbey

@ngnorman25. I had 4 relapses of cidiff starting in October after clindamycin for a sinus infection. I got sick a few days after finishing. My pcp gave me Flagyl. I got better in a few days, but relapsed after a week. He gave me another round & that time. Then he sent me to my GI. I should have gone there to begin with, but actually I wasn’t sure that was it at first. I was given vancomycin at that time. I got better again & then 10 days after finishing vancomycin I had a bad relapse & had to be taken by ambulance to the ER. I was given IV fluids in the ambulance & then more at the hospital. I was positive for Cdiff again. I was given Deficid this time & went 32 days. I was so excited because I thought after all this time I was going to be ok. I had lost 20 pounds & that put me at a dangerous 85 pounds. My GI gave me 10 days of vancomycin to get me to a point to have an FMT. In the meantime he did a sigmoidoscopy & did 5 biopsies & they were all positive. Then I was told to get off the vancomycin 2 days before the FMT. He did mine through an endoscopy past my stomach into the small intestine. I have an extra long colon & he had a hard time during my last colonoscopy so he wanted to try the endoscopy way. He said it would go all the way through my intestine that way too. I’m 3 weeks out so we don’t know if it worked yet. He’s going to test 8 weeks out unless I get sick before then. I’m better, but I still have trouble with foods. I think I’m afraid to venture out. I don’t want to mess up this FMT because I’ll have to have another one, this time via colonoscopy. My gut is definitely messed up at the moment. I get bloated easily & have stools at different times. Sometimes it’s just a little & then a little more. Lots of times I feel pressure like I need to go & it’s a tiny amount of loose stool. I’m taking a probiotic & drinking Kefir & eating yogurt. I’m definitely not right yet & wonder if I ever will be.

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@sandyabbey I so feel your pain. I, too, have had 4 flare-ups since I got sick in September due to clindamycin for a tooth abscess. I, too, went down to 86 lbs. I don't have much hope for this fmt. My family gets annoyed when I say that. They don't get it. I, too, feel I will never be freed from cdiff. I will keep you posted.

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@evelyncs

Sue, I contracted c-diff in 2011 and have had 4 positive stool cultures for this. In and out of the hospital and given large doses of Vancomycin and Flagyl intravenously. Had 6 inches of my sigmoid colon removed and have had GI symptoms ever since. As you mentioned, bloating and a lot of discomfort under my lower ribs on both sides. I have been to several GI specialists here in New York State as well as Cleveland Clinic. After multiple medications, endoscopies and testing, everyone seems "stumped". Now being treated for a fungal infection per Cleveland Clinic. Not getting any better and have little in the way of "quality of life". I know first hand how frustrating it is not to be getting better and wonder if I will have to suffer forever. I blame the c-diff for the start of my symptoms and also the aggressive IV antibiotics given over and over. I feel the antibiotics have caused nerve damage in my stomach and also mouth burning. I am astounded that I can not find a doctor that knows how to treat this or even cares. Best of luck to you with you struggle to get your health back.

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I feel so sorry for you and myself. It seems post c.diff. is a way of life now for me . I find no joy in food.( that cuts out a lot of socializing with friends ) I have not felt any hunger since 2/8/17. I only eat when I feel my blood sugar is low. This amounts to 1 mealxday . Have been re-testrd for small bowel over growth but I have no test results yet. Somebody on another blog mentioned DLG for bloating. I have to research that one. I pray daily for relief. It is depressing. I have seen 3 G.I. doctors all "stumped".

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So ridiculous. I feel like a skeleton with hair. Nothing helps me gain weight

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@ngorman25

@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 I sometimes wonder how we would be treated if our doctors ever went through a bout of this. Although, I wouldn't wish Cdiff on my worst enemy. I shake my head when I read how many of us got it from taking Clindamycin. Yet they keep giving it out to patients.

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@pines

@ngorman25 I sometimes wonder how we would be treated if our doctors ever went through a bout of this. Although, I wouldn't wish Cdiff on my worst enemy. I shake my head when I read how many of us got it from taking Clindamycin. Yet they keep giving it out to patients.

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@pines Exactly! I have been saying the same thing for months! What I don't understand is how everyone has heard of mrsa, but cdiff is a big secret and I totally believe it's because so many get it from antibiotics and the drug companies don't want that getting out!

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@ngorman25

@nettecook How long ago did you get the fmt? Has it been successful? I haven't started the prep yet today and I already feel nauseous! Trying to calm myself down. I will definitely post here as soon as I can. Thank you for your support!

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@ngorman25
I had the FMT on Feb. 28. Two weeks later I had a horrible day of constant diarrhea. Then it cleared up and I’ve had more trouble with Constipation. Then I will have a day here and there of diarrhea. I’m wondering if I’m experiencing IBS again. I see my doc next week so we’ll see. I don’t feel good. However, I have a friend who seriously almost died after gallbladder surgery and getting CDiff and the FMT saved her life and she hasn’t had trouble since! I’m
Probably not a great person to judge FMT success because I have underlying issues like Crohn’s Disease, IBS, and RA. I’m on immunosuppressive drugs as well. I really hope this is exactly what you need!!!!

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@ngorman25

@pines Exactly! I have been saying the same thing for months! What I don't understand is how everyone has heard of mrsa, but cdiff is a big secret and I totally believe it's because so many get it from antibiotics and the drug companies don't want that getting out!

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@ngorman25 I had never EVER heard of Cdiff before I got it. And I went almost two weeks thinking I first had the flu and then the Ecoli scare was going around with romaine lettuce and I thought I picked up Ecoli. So after waiting 12 days, I went to the doctor. By then, it had taken over by body. And I had googled enough things and saw a photo of Cdiff stool that looked just like what I had started passing. I never, in my life, thought I would be talking to people about BM's. 🙂

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@nettecook

@ngorman25
I had the FMT on Feb. 28. Two weeks later I had a horrible day of constant diarrhea. Then it cleared up and I’ve had more trouble with Constipation. Then I will have a day here and there of diarrhea. I’m wondering if I’m experiencing IBS again. I see my doc next week so we’ll see. I don’t feel good. However, I have a friend who seriously almost died after gallbladder surgery and getting CDiff and the FMT saved her life and she hasn’t had trouble since! I’m
Probably not a great person to judge FMT success because I have underlying issues like Crohn’s Disease, IBS, and RA. I’m on immunosuppressive drugs as well. I really hope this is exactly what you need!!!!

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@nettecook Oh thank you so much! I am just starting the prep. Hoping you get positive feedback from your doctor next week. Will keep you posted. Take care!

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@pines

@ngorman25 I had never EVER heard of Cdiff before I got it. And I went almost two weeks thinking I first had the flu and then the Ecoli scare was going around with romaine lettuce and I thought I picked up Ecoli. So after waiting 12 days, I went to the doctor. By then, it had taken over by body. And I had googled enough things and saw a photo of Cdiff stool that looked just like what I had started passing. I never, in my life, thought I would be talking to people about BM's. 🙂

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@pines Same with me! I thought I had a stomach virus. But by the third day I started feeling very weak like I was going to faint. My daughter took me to the er and that's when they tested me and said I had cdiff. None of us had any idea what they were talking about! Actually, I think it's better that I had not heard of it back then cause I might have jumped out the window​! At first, they acted like I would be there for a few days. Eight days later they let me out and two days later I tested positive again! And the rest is history!

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@ngorman25

@pines Same with me! I thought I had a stomach virus. But by the third day I started feeling very weak like I was going to faint. My daughter took me to the er and that's when they tested me and said I had cdiff. None of us had any idea what they were talking about! Actually, I think it's better that I had not heard of it back then cause I might have jumped out the window​! At first, they acted like I would be there for a few days. Eight days later they let me out and two days later I tested positive again! And the rest is history!

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They just wouldn’t listen to me for almost 3 months. I just got sicker. I know someone else who was diagnosed right off and cured in 2 weeks but felt bad for a month. There should be laws against the drugs that give you this disease and the drug companies should be held accountable

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