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 ?

@nettecook

I’ve noticed that many of you are over 70. I’m 46. Any “youngins” out there? Just curious. I think I have read that older people are more susceptible. (Not that any of you are “old.”) 😉

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@nettecook. I just turned 47, good health, the occasional UTI, and strep throat.

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I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope

I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope That sounds terrible and scary. My heart goes out to you. Have you seen a specialist in C. Diff? My general practitioner acknowledged to me she had only treated 4 other people with C. Diff and she made some mistakes. I ended up going to an Infectious Disease Specialist (who apparently is the one who really knows how the disease works) and then to a Gastroenterologist with C. Diff specialty — as in he had expertise in how to treat the disease. These two specialists knew what they were talking about. And I am getting better. They explained what is wrong with my immune system and why if I get c. diff again they will do fecal transplant. Have you been to see specialists at hospitals that have a good reputation? teaching hospitals associated with universities are often best. Mayo of course would be good. If you live near NYC I could tell you the name of the two doctors I went to. sending you my best wishes, anna

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@losthope

I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope Like you, Clindamycin changed my life when I took it last spring for a sinus infection. I had Cdiff within a couple weeks after finishing the RX. I relapsed and went through 4 bouts of Cdiff before the Dificid seemed to help me. I'm far from being "normal" and never plan anything for the first hour or two that I'm up in the morning. My problem now is all the gas in my colon. I thought it might be from the probiotic but I've noticed it's just as severe on the days I don't take it. Plus different foods really make it worse. My heart goes out to you. I found a GI that has treated numerous patients with Cdiff. I now need to make the appointment for the colonoscopy. I keep putting it off. I think it must take years to ever regain our healthy GI system after Cdiff.

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@losthope

I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope I’m so sorry it has been 8 months! 30 pounds is a lot! I’m surprised you haven’t been referred to a specialist. Sometimes we have to be our own advocate and that stinks! I wish it were different!! Clindamyacin does seem to be beast! Hang in there. Have they talked to you about a fecal transplant?

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@pines

@losthope Like you, Clindamycin changed my life when I took it last spring for a sinus infection. I had Cdiff within a couple weeks after finishing the RX. I relapsed and went through 4 bouts of Cdiff before the Dificid seemed to help me. I'm far from being "normal" and never plan anything for the first hour or two that I'm up in the morning. My problem now is all the gas in my colon. I thought it might be from the probiotic but I've noticed it's just as severe on the days I don't take it. Plus different foods really make it worse. My heart goes out to you. I found a GI that has treated numerous patients with Cdiff. I now need to make the appointment for the colonoscopy. I keep putting it off. I think it must take years to ever regain our healthy GI system after Cdiff.

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I had c dif. did the clindimyacin then ended up with h pylori. Did a natural treatment which took care of it. It was a long road though. Go see a specialist to make sure what you have.

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@losthope

I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope I, too, took clindamycin last August for a tooth abscess and 3 weeks later ended up in the hospital diagnosed with cdiff. I only weighed 100 lbs at the time and then lost 14 lbs which I cannot gain anything back. After 4 relapses and hundreds of vancomycin pills, I finally had the fmt done 5 weeks ago today. I feel pretty good right now but had a few mucus days last week and thought for sure it was cdiff again​! It stopped and so far so good. I don't believe I will ever feel pre-cdiff again. I had no health issues before cdiff. I will turn 72 on June 2nd and have been letting go of my pre-cdiff life. I believe this is the"new normal" for me. One day at a time is my new motto.

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@claytamos

I had c dif. did the clindimyacin then ended up with h pylori. Did a natural treatment which took care of it. It was a long road though. Go see a specialist to make sure what you have.

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What did you use. I have h pylori but can’t do the txt due to cdiff

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@nettecook

@losthope I’m so sorry it has been 8 months! 30 pounds is a lot! I’m surprised you haven’t been referred to a specialist. Sometimes we have to be our own advocate and that stinks! I wish it were different!! Clindamyacin does seem to be beast! Hang in there. Have they talked to you about a fecal transplant?

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I have been to infectious disease doctor and hi. They tell me I have to be patient. No fit unless relapse. I still have dumping syndrome after I eat. Just so fed up with being miserable

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@annapocono

@losthope That sounds terrible and scary. My heart goes out to you. Have you seen a specialist in C. Diff? My general practitioner acknowledged to me she had only treated 4 other people with C. Diff and she made some mistakes. I ended up going to an Infectious Disease Specialist (who apparently is the one who really knows how the disease works) and then to a Gastroenterologist with C. Diff specialty — as in he had expertise in how to treat the disease. These two specialists knew what they were talking about. And I am getting better. They explained what is wrong with my immune system and why if I get c. diff again they will do fecal transplant. Have you been to see specialists at hospitals that have a good reputation? teaching hospitals associated with universities are often best. Mayo of course would be good. If you live near NYC I could tell you the name of the two doctors I went to. sending you my best wishes, anna

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I too have been to both docs. They tell me it is a long process. I am very weary because I have one good day and 5 not so good. I have to be very careful of what I eat because I go to the bathroom always after I eat.

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@losthope

I was very healthy until was put on clindamycin and then my life changed and not for the better. I have been sick with cdiff for 8 months. The diarrhea has gone but the health issues have just gotten worse. I have lost 30 pounds and can not gain it back. I have stomach issues all the time. Now having depression a lot because tired and feeling terrible all the time. Just want my life back😓

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@losthope

What did you use. I have h pylori but can’t do the txt due to cdiff

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It's quite a few supplements. I took Natures Way Primadophilus Optima True Potency 35 Billion CFU probiotic (bought through Swanson online), Spring Valley Turmeric 500 mg (bought at WalMart), Spring Valley Ginger Root 550 mg (bought at WalMart), Swanson N-Acetyl Cysteine (bought from Swanson online), and Swanson DGL Licorice Root (bought online from Swanson). I followed the labels for dosage. It took approx 60 days for it to clear the h pylori but I felt better along the way. Havent had c dif or h pylori since.

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@annapocono

@losthope That sounds terrible and scary. My heart goes out to you. Have you seen a specialist in C. Diff? My general practitioner acknowledged to me she had only treated 4 other people with C. Diff and she made some mistakes. I ended up going to an Infectious Disease Specialist (who apparently is the one who really knows how the disease works) and then to a Gastroenterologist with C. Diff specialty — as in he had expertise in how to treat the disease. These two specialists knew what they were talking about. And I am getting better. They explained what is wrong with my immune system and why if I get c. diff again they will do fecal transplant. Have you been to see specialists at hospitals that have a good reputation? teaching hospitals associated with universities are often best. Mayo of course would be good. If you live near NYC I could tell you the name of the two doctors I went to. sending you my best wishes, anna

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I would love to have the name of a doctor that is a GI that specializes in treating c. diff . I would travel anywhere.

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@sue6408

I would love to have the name of a doctor that is a GI that specializes in treating c. diff . I would travel anywhere.

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@sue6408 My understanding is that Mayo has a really good program for C. Diff. You should check that out. An on line journal called CONTAGION LIVE has a set of videos in which national experts discuss specific C. Diff treatment issues. You could go to that video and get a sense of each of these doctors. Here are their names and locations as I wrote them down: Lawrence Brandt at Albert Einstein Hospital in NYC, Erik Dubberke at Washington School of Medicine in St. Louis MO, Peter Salgo at columbia University Hospital (i was less keen on him from the video), Yoav Golan at Tufts University in Boston, daniel Freedberg at Colunbia Presbyterian Hospital, NYC. The two doctors who i have seen and who seemed good to me are here in NYC. They are Harjat Singh (646-962-5666) , an infectious disease specialist (she know a lot about how C.diff works) and Carl Crawford, a GI with C. Diff specialty (646-962-4000). You could check out all these doctors on line and go to whichever one is closest to you. There is a wait to get in. If you can't find the videos let me know.Good luck, Anna

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@annapocono

@sue6408 My understanding is that Mayo has a really good program for C. Diff. You should check that out. An on line journal called CONTAGION LIVE has a set of videos in which national experts discuss specific C. Diff treatment issues. You could go to that video and get a sense of each of these doctors. Here are their names and locations as I wrote them down: Lawrence Brandt at Albert Einstein Hospital in NYC, Erik Dubberke at Washington School of Medicine in St. Louis MO, Peter Salgo at columbia University Hospital (i was less keen on him from the video), Yoav Golan at Tufts University in Boston, daniel Freedberg at Colunbia Presbyterian Hospital, NYC. The two doctors who i have seen and who seemed good to me are here in NYC. They are Harjat Singh (646-962-5666) , an infectious disease specialist (she know a lot about how C.diff works) and Carl Crawford, a GI with C. Diff specialty (646-962-4000). You could check out all these doctors on line and go to whichever one is closest to you. There is a wait to get in. If you can't find the videos let me know.Good luck, Anna

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Bless you, thank you.

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