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 ?

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

Liked by pines

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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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Hi… That sounds familiar to me, yes indeed. I am so sorry this is happening to you. Is this your first go around with Cdiff? Are you seeing a Infectious Disease Doctor? Cause if you are I would search for a different one!!! You should of had a change a med or had a Poop Transplant by now. Did you tell your doctor that you still have the stabbing pain? You shouldn't have that and if you do it sounds almost like appendicitis? But I am no doctor, but I would definitely get to the ER and see if your appendix burst or what is going on…this is not something to mess with. Please go to the ER and keep us posted. Thank you

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@tlk

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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Oh and are you seeing a gastronolgist for your esophagitis? Have you had a colonoscopy and or and endoscopy? You need to see them you could get Barrets Syndrome which is pre-cancerous. I have that. Please get help!!!

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@plm2019

Oh and are you seeing a gastronolgist for your esophagitis? Have you had a colonoscopy and or and endoscopy? You need to see them you could get Barrets Syndrome which is pre-cancerous. I have that. Please get help!!!

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I went undiagnosed for 7 months while trying to get my gp to take me seriously. She just kept trying different acid reducers. Even after the h. Pylori and Candida was caught on egd and colonoscopy the c diff wasn’t found until 2 weeks ago when I had my first ever stool test since my symptoms weren’t subsiding. I am currently on dificid but only have two days left and am still experiencing the pain in my side at full force along with less diarrhea and all my esophagus Candida symptoms. The gi says we can’t treat the lymphatic esophagus and the Candida until the diarrhea is gone.

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@tlk

I went undiagnosed for 7 months while trying to get my gp to take me seriously. She just kept trying different acid reducers. Even after the h. Pylori and Candida was caught on egd and colonoscopy the c diff wasn’t found until 2 weeks ago when I had my first ever stool test since my symptoms weren’t subsiding. I am currently on dificid but only have two days left and am still experiencing the pain in my side at full force along with less diarrhea and all my esophagus Candida symptoms. The gi says we can’t treat the lymphatic esophagus and the Candida until the diarrhea is gone.

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I'm happy to hear you are taking Dificid. That was the only RX that worked for me. My doctor prescribed Flagyl first in April 2018, then Vanco for my 2nd and 3rd bouts of Cdiff. I even did the Vanco pulse and taper for 6 weeks with my 3rd bout. And finally, last October and my 4th Cdiff episode, I was put on Dificid. I know it's terribly expensive but it worked for me. I was ready to do the FMT if I relapsed again. I'm so fearful of ever needing to take an antibiotic again since Clindamycin for a sinus infection is what started the dreaded Cdiff in my. It's sad that you had to go so long prior to having a stool sample tested.

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@pines

I'm happy to hear you are taking Dificid. That was the only RX that worked for me. My doctor prescribed Flagyl first in April 2018, then Vanco for my 2nd and 3rd bouts of Cdiff. I even did the Vanco pulse and taper for 6 weeks with my 3rd bout. And finally, last October and my 4th Cdiff episode, I was put on Dificid. I know it's terribly expensive but it worked for me. I was ready to do the FMT if I relapsed again. I'm so fearful of ever needing to take an antibiotic again since Clindamycin for a sinus infection is what started the dreaded Cdiff in my. It's sad that you had to go so long prior to having a stool sample tested.

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I also took Vanco for 6 weeks then we tried another 6 weeks and flagyl together which cleared it up. We didn't have to do Dificid, they were also talking about a poop transplant. I read up on those and they aren't very safe alot of people die from those which totally scared me and I read that after the fact. Keflex is on my no list of antibiotics thats a supposed cdiff starter. I went over a year the first time and I cried for and hour when I found out I had it the second time cause no one told me it stays in your system so it was a surprise to me. I hope you feel better soon!!

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@plm2019

I also took Vanco for 6 weeks then we tried another 6 weeks and flagyl together which cleared it up. We didn't have to do Dificid, they were also talking about a poop transplant. I read up on those and they aren't very safe alot of people die from those which totally scared me and I read that after the fact. Keflex is on my no list of antibiotics thats a supposed cdiff starter. I went over a year the first time and I cried for and hour when I found out I had it the second time cause no one told me it stays in your system so it was a surprise to me. I hope you feel better soon!!

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@plm2019 Do you know what caused your relapse after one year? Was it Keflex that caused your relapse? I haven't taken any antibiotics since having Cdiff in 2018.

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