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 ?

@kanaazpereira

Hello everyone,

I encourage you to also view the Gastroenterology & GI Surgery Page on Connect https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where Mayo Clinic experts talk about C diff. IBD, celiac disease and other digestive conditions, and also discuss various treatments, ongoing research, current events.
For instance, in this post Dr. Darrell Pardi writes about "C. Difficile Care at Mayo Clinic” https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/c-difficile-care-at-mayo-clinic/

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I have tested negative 2x this year. I am still unwell with large upper abd. distention with eating and bouts of diarrhea , early satiety. Your reference in the links refer to recurrent occurrences of c.difficile. I no longer have the infection. If you know of any information, articles,etc. concerning treatment of the patient ‘s continuing symptoms post c.dif. I would greatly appreciate any help.

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Sue, I am disheartened to hear that even after the cdiff infection is gone, that you still have many symptoms. I guess there really is no full recovery from this. Makes me sad that I will never be the same again.

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@ngorman25

Thanks Sue! I think I probably will have the fmt instead of trying dificid. I really don't want to take any more antibiotics than I have already. I had several antibiotics all last year for different reasons. I was "ripe" when I got an abcessed tooth in August and the dentist prescribed clindamycin, which finished me off! Then I got the "bastard bug" ,(cdiff). My gastro doctor called it that. I have had 4 flare-ups since September. I just dropped off a specimen, again, and am pretty sure it will be positive as I have had some diarrhea since Saturday. That's why I asked if anyone had any knowledge of fmt.

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@ngorman25 , if FMT is 90% effective, why are we bothering with more antibiotics? I don't understand why Dr's won't just go that route after one fail of antibiotics? I am on my first round of vanco after being diagnosed on Wednesday, but sadly I lived with Cdiff for the last 8 months or so and never went to the Dr. I would have bad flare ups at times, like when I had strep and was given antibiotics, but I never shared how my bowels were affected with Dr., shame on me I know. So I'm praying that this 10 day treatment will bring me back to normal because I'm so tired of feeling bad. Clindamycin needs to be banned!!

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@femalegolfer

@ngorman25 , if FMT is 90% effective, why are we bothering with more antibiotics? I don't understand why Dr's won't just go that route after one fail of antibiotics? I am on my first round of vanco after being diagnosed on Wednesday, but sadly I lived with Cdiff for the last 8 months or so and never went to the Dr. I would have bad flare ups at times, like when I had strep and was given antibiotics, but I never shared how my bowels were affected with Dr., shame on me I know. So I'm praying that this 10 day treatment will bring me back to normal because I'm so tired of feeling bad. Clindamycin needs to be banned!!

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@femalegolfer I agree re. Clindamycin. Many dentists give it out for infections or prior to root canals. My dr. gave it to me for a sinus infection but I have a friend who was given it prior to a root canal.

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@femalegolfer I agree with you as far as doctors waiting to offer fmt but I think there is some sort of rule that the patient has to have relapsed several times before it is offered. I also agree that clindamycin needs to be gone as I took it for an abcessed tooth in August. However, I think we don't have any chance of the pharmaceutical companies getting rid of anything. I just wish there was some warning to consumers as to the danger of taking it! And another thing, I think the pharmaceutical companies are trying to keep cdiff a "secret". I don't know about you, but I had never heard of it until I went to the hospital in September, where I was diagnosed. None of my family ever heard of it and most of my friends had never heard of it! It's right up there with mrsa which everyone has heard of.

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@ngorman25 funny story, i had heard of it, but i didn't really remember, my brother had it about 3 years ago when he had to stay in the nursing home after he had is knee replaced and he got staph infection in it, and had to go 3 weeks without a knee while undergoing a large dosage of antibiotics. But when i looked it up on internet i just read the part about getting it in the nursing home….kinda skipped over the antibiotic part. Even my primary dr. Was shocked that i had it because i havent been on that many antibiotics.
But luckily she decided to rule it out!

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@femalegolfer It's not only nursing homes. It's also very common in hospitals. Also, it's not only clindamycin, fluoroquinolones and other antibiotics can give it to you. That's why I feel the pharmaceutical companies are trying to keep it a secret. It's scary stuff! What chance does the consumer have against pharmaceutical companies?

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@ngorman25 I looked back at my charts, I had been given Cipro in April of 2017 for 14 days, augmentin in June of 2017 and amoxicillin in November of 2017. It was during one of these prescriptions I must have gotten it. The first two for UTI's and kidney infection, the last was for strep throat. Sure doesn't seem like that is enough to cause such an issue. I'm still getting fevers and horrible aches in my back where I had the kidney pain before. So many people are sick with the flu in my small community, that I am over paranoid about not getting the flu on top of everything else.

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@sue6408

I would go for it. It has a 90% cure rate I read some where. Good luck.

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@ sue6408. I’m wonder the same thing. I relapsed 3 times since October. I finally tested negative last week. I failed Flagyl 2 times & vancomycin once. Them finally Dificid gave me a negative. They said it might come back though or it could be a false negative since my specimen was partially formed. Anyway I’m still cramping lots in spite of the anti spasmodic med. a couple of days ago as soon as I ate I would cramp & be in the bathroom with diarrhea within 30 minutes. Now I haven’t been in 2 days. After I finished the Dificid I went 5 days so they gave me fibercon. That was all good for about 3 days & then I was going at least. 6 times a day. One night I cramped so bad I didn’t get any sleep at all. I am only eating soft foods at the moment. That’s what my GI told me to do I’m down to 85 pounds so I need to be able to gain back my 20 pounds. I’m very overwhelmed by all this. My GI said it might be a year or I could never be the same. They called it post infection IBS.

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@femalegolfer

@ngorman25 I looked back at my charts, I had been given Cipro in April of 2017 for 14 days, augmentin in June of 2017 and amoxicillin in November of 2017. It was during one of these prescriptions I must have gotten it. The first two for UTI's and kidney infection, the last was for strep throat. Sure doesn't seem like that is enough to cause such an issue. I'm still getting fevers and horrible aches in my back where I had the kidney pain before. So many people are sick with the flu in my small community, that I am over paranoid about not getting the flu on top of everything else.

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@femalegolfer Was the last antibiotic you took in November, 2017? I ended up with a UTI last summer when I had Cdiff. I was so sick trying to fight both of them. And Cipro is right up there with Clindamycin. I ended up taking Macrobid for the UTI. I'll never taking Cipro again either. It would be interesting to see what the studies show after people have done the FMT's for more than a couple years. I read one story about two sisters and the heavier one used her thinner sister as a FMT donor. Within six months, she had lost a lot of weight. As was mentioned, FMT is not even suggested until you've relapsed 3 or 4 times. I know my insurance wouldn't pay for Deficid until I had tried Vancomycin. So they probably wouldn't pay for FMT either.

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@ngorman25

@femalegolfer I agree with you as far as doctors waiting to offer fmt but I think there is some sort of rule that the patient has to have relapsed several times before it is offered. I also agree that clindamycin needs to be gone as I took it for an abcessed tooth in August. However, I think we don't have any chance of the pharmaceutical companies getting rid of anything. I just wish there was some warning to consumers as to the danger of taking it! And another thing, I think the pharmaceutical companies are trying to keep cdiff a "secret". I don't know about you, but I had never heard of it until I went to the hospital in September, where I was diagnosed. None of my family ever heard of it and most of my friends had never heard of it! It's right up there with mrsa which everyone has heard of.

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Clindamycin was my culprit too. I’ll NEVER take it again. I had 3 relapses & my next step was to be FMT. I tested negative a few days ago after a round of Dificid. They said they might retest to be sure in a couple of more weeks. This had consumed me. My last relapse sent me to the hospital in a ambulance. I’m down to 85 pounds. The dr said it could be up to a year before normal comes again & it might never. I’m very distressed

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@sandyabbey

Clindamycin was my culprit too. I’ll NEVER take it again. I had 3 relapses & my next step was to be FMT. I tested negative a few days ago after a round of Dificid. They said they might retest to be sure in a couple of more weeks. This had consumed me. My last relapse sent me to the hospital in a ambulance. I’m down to 85 pounds. The dr said it could be up to a year before normal comes again & it might never. I’m very distressed

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@sandyabbey I'm wondering if our muscles have something to do with our BM after Cdiff. I had Cdiff 4 times in 2018 starting in April and ending in October after taking Deficid. But I'm finding it harder to have a normal BM because of the muscles used to help the colon. Maybe I'm wrong…. but I think after so many months of diarrhea and not using those muscles or whatever helps push the feces through, it's more difficult to go back to normal. And I NEVER thought I would be talking about BM's this much in my entire life. 🙂

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I have going around & around with my gi doctor about my serve stomach cramps after eating, nausea, horrible diarrhea that I barely make to bathroom. I had a full month of this in Nov. went my family doctor who sent me to the gi doctor all blood test, stool sample, x-rays, CT are normal. Finally got biopsies back I have Barrett's esophagus, last year I was diagnosed with a hiatal hernia. My doctor is is gone till Monday so I have no clue if the other issues are related to this BE. I have waited almost 2weeks for biopsy results, apparently the doctor sent them in the mail, which I have not received yet. I only know what results were because i e-mail the office & they sent letter through the e-mail. I really have had enough of this. Last nite I was sick again, it seems like what ever is going on in my stomach is getting because it's almost a daily thing now…

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@pines

@sandyabbey I'm wondering if our muscles have something to do with our BM after Cdiff. I had Cdiff 4 times in 2018 starting in April and ending in October after taking Deficid. But I'm finding it harder to have a normal BM because of the muscles used to help the colon. Maybe I'm wrong…. but I think after so many months of diarrhea and not using those muscles or whatever helps push the feces through, it's more difficult to go back to normal. And I NEVER thought I would be talking about BM's this much in my entire life. 🙂

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That happened to me also. No muscle control…

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@sandyabbey

Clindamycin was my culprit too. I’ll NEVER take it again. I had 3 relapses & my next step was to be FMT. I tested negative a few days ago after a round of Dificid. They said they might retest to be sure in a couple of more weeks. This had consumed me. My last relapse sent me to the hospital in a ambulance. I’m down to 85 pounds. The dr said it could be up to a year before normal comes again & it might never. I’m very distressed

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@sandyabbey I'm happy to hear you are testing negative after taking Dificid. So far it worked for me. I finished the RX on Oct. 26th. I still have days that my BM's are loose and I continue to worry any time I have stomach cramping. I just think it will take a year or so to ever be truly "normal" again. Now I deal with severe gas pains, especially late at night and when I get up in the am. "THINK POSITIVE AND STAY NEGATIVE." I think that's going to be my mantra for 2019. 🙂 🙂

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