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 ?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@sue6408

I had c. Diff for 13 months. I am prone to UTI. Macrobid is safe. ( praise the Lord)

Jump to this post

Were you quarantined? What protocol did you use ((gloves, Clorox, own toilet, etc.)?

REPLY
@patts

Were you quarantined? What protocol did you use ((gloves, Clorox, own toilet, etc.)?

Jump to this post

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

REPLY
@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

Jump to this post

@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.

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY

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?

REPLY
@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.

Jump to this post

@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???

REPLY
@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???

Jump to this post

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.

REPLY

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.

REPLY
Please sign in or register to post a reply.