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 ?

Had Cdiff for over one year back in 2011 I was in the hospital for 4 months and was very sick where I almost died. I went all that time up until July of this year I think it was with out having even a tad bit of the runs and then I took keflex for a cut on my head that wasn't a big deal. They sewed it up and it really didn't need an antibiotic. Then a couple days later there it was like a bad habit.

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@plm2019

Had Cdiff for over one year back in 2011 I was in the hospital for 4 months and was very sick where I almost died. I went all that time up until July of this year I think it was with out having even a tad bit of the runs and then I took keflex for a cut on my head that wasn't a big deal. They sewed it up and it really didn't need an antibiotic. Then a couple days later there it was like a bad habit.

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@plm2019 So you went for 8 years from 2011 to 2019 and then still had a relapse?

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Yes I did… they told me you can go 20 years and still have a relapse. Its nasty stuff that lies dormant in your gastro intenstines and they just sit and wait for the perfect time to attack, maybe just so happened to be Keflex and apparently the was something in there already that was not happy either. So the 2 go hand in hand and boom there you have it the present of Cdiff… the gift that keeps on giving literally. It never goes away, don't think it does, it will get you at anytime. Obviously I am a prime example.

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@sue6408

Thank you for responding , I do take kombucha (how much to take daily ? ) I take probiotics , floraster 2xdaily. I just don’t know what else to do. My G.I. Dr. Has no further ideas. My chart was sent to the Mayo Clinic and they refused my case for what ever reason. I am at the end of my rope.

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Hi Sue.. your comment was a long time ago, so I don't know if you'll see, but I'm wondering about SIBO with you. I know I sound like a SIBO (small intestinal bacterial overgrowth) proponent here, but while of course it's not everyone's problem, since I've learned so much about it, I think it is greatly under-diagnosed and treated when I read people's stories. Yours would be a classic presentation, as a theory that makes sense is that it starts (not always) with some kind of food poisoning or gastric infection and that leads to bacteria later colonizing the small intestine.

Bloating after eating is a classic SIBO symptom. The tricky thing I've found is finding a GI doc who understands it and knows how to diagnose, and treat it properly. I was lucky to have a diagnosis from Mayo, but I don't think they believe it is a legitimate problem (that is the impression I got). I had to research myself, and found a protocol from Dr. Mark Pimental at Cedars Sinai, who has done a lot of research on this. (I have the newest protocol from a patient who interviewed him 🙂 ), if you or anyone is interested. I have a local nurse practitioner who will prescribe my meds. If this is not successful , I'm going to Johns Hopkins, where they have GI docs who specialize in SIBO. That is the only place I've found in America, although there must be isolated Dr.s somewhere.

With SIBO, much of the advice you typically get is opposite of what you want to do. i.e. probiotics, and pre-biotics like Kombucha. You DON'T want to put any more bacteria in your GI tract, i.e small intestine. I think (this is my personal opinion based on research) , and is controversial among people who study this, but while probiotics were a nice idea it backfired, and probably makes a lot of people sicker, definitely people with SIBO. You want all these bacteria in your COLON. Unfortunately, by 'eating' them, they likely get wiped out in your stomach or small intestine before every making it there. AND, if they don't they end up taking residence in your small intestine, where you don't want them. They start feeding on your kombucha and carbs and making gasses, i.e bloating.

I'd investigate that. Be careful about naturopaths. They've kind of latched on to SIBO. Some probably know what they are doing, some don't. I think that's why it gets a bad rap with the medical community.

SIBO needs to be treated with specific antibiotics, depending on the type of bacteria you have, although based on your symptoms, you could assume a specific type and try. It also involves taking a prokinetic (wich seems counterintuitive if you have diarrhea, and also eating in a certain way.. HOW you eat, is probably more important than WHAT you eat. If the FODMAP diet isn't helping, I'd just stop that, it's so restrictive. There is a SIBO diet which is less restrictive, it won't cure it, but some people find it helps, at least avoiding things that the bacteria like, but you can't easily digest – i.e. fiber and all the things we are 'told' are good for us 🙂

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Hi I definitely would love to learn about the protocol
I’m having issues with SIBO and not getting any relief from the antibiotic I am on.

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@elle1233

Hi Sue.. your comment was a long time ago, so I don't know if you'll see, but I'm wondering about SIBO with you. I know I sound like a SIBO (small intestinal bacterial overgrowth) proponent here, but while of course it's not everyone's problem, since I've learned so much about it, I think it is greatly under-diagnosed and treated when I read people's stories. Yours would be a classic presentation, as a theory that makes sense is that it starts (not always) with some kind of food poisoning or gastric infection and that leads to bacteria later colonizing the small intestine.

Bloating after eating is a classic SIBO symptom. The tricky thing I've found is finding a GI doc who understands it and knows how to diagnose, and treat it properly. I was lucky to have a diagnosis from Mayo, but I don't think they believe it is a legitimate problem (that is the impression I got). I had to research myself, and found a protocol from Dr. Mark Pimental at Cedars Sinai, who has done a lot of research on this. (I have the newest protocol from a patient who interviewed him 🙂 ), if you or anyone is interested. I have a local nurse practitioner who will prescribe my meds. If this is not successful , I'm going to Johns Hopkins, where they have GI docs who specialize in SIBO. That is the only place I've found in America, although there must be isolated Dr.s somewhere.

With SIBO, much of the advice you typically get is opposite of what you want to do. i.e. probiotics, and pre-biotics like Kombucha. You DON'T want to put any more bacteria in your GI tract, i.e small intestine. I think (this is my personal opinion based on research) , and is controversial among people who study this, but while probiotics were a nice idea it backfired, and probably makes a lot of people sicker, definitely people with SIBO. You want all these bacteria in your COLON. Unfortunately, by 'eating' them, they likely get wiped out in your stomach or small intestine before every making it there. AND, if they don't they end up taking residence in your small intestine, where you don't want them. They start feeding on your kombucha and carbs and making gasses, i.e bloating.

I'd investigate that. Be careful about naturopaths. They've kind of latched on to SIBO. Some probably know what they are doing, some don't. I think that's why it gets a bad rap with the medical community.

SIBO needs to be treated with specific antibiotics, depending on the type of bacteria you have, although based on your symptoms, you could assume a specific type and try. It also involves taking a prokinetic (wich seems counterintuitive if you have diarrhea, and also eating in a certain way.. HOW you eat, is probably more important than WHAT you eat. If the FODMAP diet isn't helping, I'd just stop that, it's so restrictive. There is a SIBO diet which is less restrictive, it won't cure it, but some people find it helps, at least avoiding things that the bacteria like, but you can't easily digest – i.e. fiber and all the things we are 'told' are good for us 🙂

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Thanks for the info. I tested negative for SIBO. I have been diagnosed with the inability to digest sucrose and starches. There is a medicine for the sucrose portion of the diagnosis, but not for the starches. The only problem is the sucraid cost $8084/month. I don't think the average person can afford this. If i eat only "home made" meals that consist of protein and a green veggie (no peas). I have no bloating or diarrhea .The diet is worse than fodmap . Just check food labels in your kitchen… table sugar is in everything.

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Have your physicians office contact the company that makes it they have programs. I also would check to see if they are affiliated with a hospital that has a pharmacy that can purchase drugs through a program called 340b. Trust me I do this for a living. Good luck

Liked by sirgalahad, pines

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@losthope

Have your physicians office contact the company that makes it they have programs. I also would check to see if they are affiliated with a hospital that has a pharmacy that can purchase drugs through a program called 340b. Trust me I do this for a living. Good luck

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@losthope How have you been doing? I recall last year when I was dealing with Cdiff from April to October, you were going through the same thing. That was great advice to contact the hospital pharmacy. I took three different RX's for my 4 bouts of Cdiff. The Dificid was the last one and my co-pay was going to be almost $1,000. My gastroenterologist went through the hospital pharmacy and I ended up only paying $100 co-pay. And the Dificid was the one that finally worked. My insurance wouldn't approve it until I had also tried Vancomcin first. And I had even done the Vanco pulse and taper for 6 weeks and Cdiff still returned two weeks after finishing the taper. Hope this finds you feeling great. I'm one year from my last episode and hope I never have to take another antibiotic. Clindamycin really did a number on me.

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