C. difficile – Are your guts ever normal again?
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 ?
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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.
@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.
@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.
@losthope Thx! I'm going to need it!
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.
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.
@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!
@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.