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 ?

@sarasally2

yes, I was in the hospital four times in quarantine, they came in the room wearing gowns and masks and gloves, took them off before they went out otherwise no one in or out. My daughter cleaned the whole house down with bleach which I am highly allergic to but was in the hospital when she did it. She threw away curtains, drapes,etc Then they did the fecal transplant because nothing was working, was going to try a new drug, free from the company but I had the transplant instead. $11,000 in copays and I was never the same, sick everyday

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@sarasally2 I can sure relate except that I wasn't in the hospital during my 4 bouts of Cdiff in 2018. I've never gone through anything like it. I took Flagyl, Vancomycin twice and even did the pulse and taper for 6 weeks and finally Dificid worked for me. It's terribly expensive and I'm sure that's why the insurance doesn't cover it until I'd tried Vanco. My next alternative was going to be the FMT. All this from taking Clindamycin for a sinus infection. Every time I hear that someone I know is taking antibiotics, I cringe.

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@pines

@sarasally2 I can sure relate except that I wasn't in the hospital during my 4 bouts of Cdiff in 2018. I've never gone through anything like it. I took Flagyl, Vancomycin twice and even did the pulse and taper for 6 weeks and finally Dificid worked for me. It's terribly expensive and I'm sure that's why the insurance doesn't cover it until I'd tried Vanco. My next alternative was going to be the FMT. All this from taking Clindamycin for a sinus infection. Every time I hear that someone I know is taking antibiotics, I cringe.

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mine started from many antibiotics for a sinus infection five years ago and I recently had to take three days of an antibiotic and have been having panic attacks. I really didn't think I was going to make it. I managed to go five years without an antibiotic knowing one day I would have to. I have doubled florastor, flooded myself with water and prayed a lot. I have been dealing with a brain tumor but taking the antibiotic threw me over the brink. The fecal transplant wasn't bad but I have IBS, SIBO, diverticulitis and all kinds of gut issues

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I heard that it was reported in the New York Times that two people who were given fecal transplants died and so the FDA has cut back on the number it will allow — and if i understand it right, will only let you get one now if you are really at a terrible place. Have any of you heard this? Have any of you had a fecal transplant in last couple of months.

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I had one in Feb of this year. I have not heard of them being that dangerous. Did the article say what caused the death?

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@annapocono

I heard that it was reported in the New York Times that two people who were given fecal transplants died and so the FDA has cut back on the number it will allow — and if i understand it right, will only let you get one now if you are really at a terrible place. Have any of you heard this? Have any of you had a fecal transplant in last couple of months.

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@annapocono I had the fmt in March of this year after having 4 relapses and hundreds of vancomycin that did nothing. I have not heard of anything negative about fmt and am glad I didn't hear this before I had it! I have been doing ok just scared of getting sick and needing an antibiotic! How did you hear about 2 people dying? And from what???

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@ngorman25

@annapocono I had the fmt in March of this year after having 4 relapses and hundreds of vancomycin that did nothing. I have not heard of anything negative about fmt and am glad I didn't hear this before I had it! I have been doing ok just scared of getting sick and needing an antibiotic! How did you hear about 2 people dying? And from what???

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I would do it again if I had to. My doc furnished the donor and everything was done under a "colonoscopy" five years ago I looked for a doc to do it and he was right here where I lived! Duke wasn't doing them at the time nor were others without jumping through hoops. Other docs here didn't want it done but something had to be done, nothing else was working. Never mind what you just read in the news. I also have fibro and others thought it might help that but I don't think so. I have gut issues everyday but try to deal with them.

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here is the article from NYTimes. You can google it and read it.

Fecal Transplant Is Linked to a Patient's Death, the FDA Warns
https://www.nytimes.com › 2019/06/13 › health › fecal-transplant-fda

First of all it is clear from the article (and what my friend who has worked in hospital with patients who got FMT said )– that FMT is still available for people who are really ill and might otherwise not make it Perhaps that includes me as I am labeled "immuno suppressed" even though I feel well right now. Furthermore, in regard to less ill people, people who are not immuno suppressed or really really sick, I see that it is not actually saying FMT can't be done for them but that the doctors need to get in place something that guarantees that the transplanted fecal matter has been tested for all drug resistant bacteria. So it's for our safety.

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@pines

@sarasally2 I can sure relate except that I wasn't in the hospital during my 4 bouts of Cdiff in 2018. I've never gone through anything like it. I took Flagyl, Vancomycin twice and even did the pulse and taper for 6 weeks and finally Dificid worked for me. It's terribly expensive and I'm sure that's why the insurance doesn't cover it until I'd tried Vanco. My next alternative was going to be the FMT. All this from taking Clindamycin for a sinus infection. Every time I hear that someone I know is taking antibiotics, I cringe.

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Explain the pulse and taper to me, please? I think that’s what my doc is going to do starting next week as I’m finishing up myb2 weeks of 250 mg vanco.

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@patts

Explain the pulse and taper to me, please? I think that’s what my doc is going to do starting next week as I’m finishing up myb2 weeks of 250 mg vanco.

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@patts When you do a pulse a taper, it's a way of weaning you off the drug and hope more "good" bacteria will grow. You may now be taking 2 or 3 Vanco a day and when you taper, you may go to 1 or 2 and day for one week and then it will be cut to one a day…. and in my case, I even went to 1 every other day. However, two weeks after doing that, the Cdiff returned. As a last resort, I took Dificid which is highly expensive. I had made the decision that if the Dificid did not work, I would do the FMT.

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@pines

@patts When you do a pulse a taper, it's a way of weaning you off the drug and hope more "good" bacteria will grow. You may now be taking 2 or 3 Vanco a day and when you taper, you may go to 1 or 2 and day for one week and then it will be cut to one a day…. and in my case, I even went to 1 every other day. However, two weeks after doing that, the Cdiff returned. As a last resort, I took Dificid which is highly expensive. I had made the decision that if the Dificid did not work, I would do the FMT.

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Thanks! I wasn’t sure what the “pulse” part is. I’m currently doing 4 Vancomycin 2*0 mg a day

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@losthope

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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I know this is an old post but I am currently being treated for c diff 2 days left on dificid with persistent symptoms after going undiagnosed for 9 months. I also have Candida esophagitis. All of my issues started with the “stitch” in my left side. It’s right between my two lowest ribs and feels like stabbing and twisting of my insides. It was intermittent weekly for years before and is now daily at a level 7-9. Does this sound similar to your pain in your side and did it ever go away? Did you find anything to help it? TIA

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