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 ?

@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

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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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@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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I've had a heck of a time with c diff. Back in November I was on penicillin for 2 weeks. Then earlier December I was on Macrobid. About a week later I was on Augmentin for 2 weeks. Around Christmas time I knew something was wrong. I was cramping terribly, honestly felt like contractions. I had the dr. order a stool sample. Came back positive for c.diff. I completed a 10 day course of Vancomycin. 2 weeks later I still wasn't feeling right, so I went on a 14 day course of vancomycin. 5 days later I submitted another sample and it was still positive. I was referred to an infectious disease doctor who put me on a 6 week taper method of vancomycin. My last dose was April 9th. I still have random bouts of loose stools, but nothing like it was. Debating if I should get tested again for piece of mind. Oh yeah, I'm only 24😑

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When I went through the Vancomycin for c. dif my doctor had me do a good probiotic right after. I was good after that.

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@katek001

I've had a heck of a time with c diff. Back in November I was on penicillin for 2 weeks. Then earlier December I was on Macrobid. About a week later I was on Augmentin for 2 weeks. Around Christmas time I knew something was wrong. I was cramping terribly, honestly felt like contractions. I had the dr. order a stool sample. Came back positive for c.diff. I completed a 10 day course of Vancomycin. 2 weeks later I still wasn't feeling right, so I went on a 14 day course of vancomycin. 5 days later I submitted another sample and it was still positive. I was referred to an infectious disease doctor who put me on a 6 week taper method of vancomycin. My last dose was April 9th. I still have random bouts of loose stools, but nothing like it was. Debating if I should get tested again for piece of mind. Oh yeah, I'm only 24😑

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@katek001 Last year, I also did vancomycin for 10 days, then another Cdiff relapse so I did the Vanco pulse and taper for 6 weeks. Cdiff again returned three weeks later. I then took Dificid (fidaximicin) for 10 days and that's the RX that finally killed all the Cdiff spores. My GI also has me taking Florastor or any probiotic with S. Boulardii. I finished the Dificid last October and I still have days where I'll have loose stools. I think it will take a year or longer to ever feel "normal" again.

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@pines

@katek001 Last year, I also did vancomycin for 10 days, then another Cdiff relapse so I did the Vanco pulse and taper for 6 weeks. Cdiff again returned three weeks later. I then took Dificid (fidaximicin) for 10 days and that's the RX that finally killed all the Cdiff spores. My GI also has me taking Florastor or any probiotic with S. Boulardii. I finished the Dificid last October and I still have days where I'll have loose stools. I think it will take a year or longer to ever feel "normal" again.

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I'm on probiotics too! I just feel so bad for my little one, I've been on antibiotics practically since she's been born. I'm breastfeeding, the doctors said vancomycin was safe for breastfeeding. I had the crabbiest baby for about 3 months

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@katek001

I'm on probiotics too! I just feel so bad for my little one, I've been on antibiotics practically since she's been born. I'm breastfeeding, the doctors said vancomycin was safe for breastfeeding. I had the crabbiest baby for about 3 months

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@katek001 I’m so very sorry for your experience. I can’t imagine dealing with this with a baby! Did you have C Diff while pregnant too? You are the youngest one on this thread I think. I’m 46 and was one of the “young” ones for awhile. I hope you start feeling better soon. My doc said that it does take awhile to feel normal.

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@nettecook

@katek001 I’m so very sorry for your experience. I can’t imagine dealing with this with a baby! Did you have C Diff while pregnant too? You are the youngest one on this thread I think. I’m 46 and was one of the “young” ones for awhile. I hope you start feeling better soon. My doc said that it does take awhile to feel normal.

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So sorry for you both. I am 69 and it’s been 9 months for me. I hop you both get better soon. Prayers

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@claytamos

When I went through the Vancomycin for c. dif my doctor had me do a good probiotic right after. I was good after that.

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What one did you use?

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@losthope

What one did you use?

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Nature's Way Primadophilus Optima 35 Billion CFU

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@nettecook

@katek001 I’m so very sorry for your experience. I can’t imagine dealing with this with a baby! Did you have C Diff while pregnant too? You are the youngest one on this thread I think. I’m 46 and was one of the “young” ones for awhile. I hope you start feeling better soon. My doc said that it does take awhile to feel normal.

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The doctors aren't really sure when I got it. I did work at a nursing home last year for about 6 months and I was exposed to one individual who I think had it for months before anything was done. So I really think I had c. Diff during my pregnancy, but I just thought it was my IBS so I didn't even mention anything to my OB 🤦‍♀️ I just took imodium a lot. I'm just so thankful I was able to continue to breastfeed, and not be hospitalized from it or have to pump and dump.

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Just want to wish all of you a very Happy Mother's Day! Update on me… I just passed 7 weeks post fmt and I am feeling pretty good! I will see my doctor on May 20th. Hoping you are all feeling better too! Thank you all so much for sharing what has worked for you. It truly has helped!

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