Never-Ending C-Diff

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ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 9/2/2009 10:03 AM (GMT -7)   
I had C-Diff, went on Flagyl for 2-weeks, it came back within 5-days of stopping the Flagyl.  This time went on Vancomycin for 2-weeks.  Finished it 6-days ago. Today I'm showing signs of it returning - again.  Does it ever go away and stay away?  There isn't anything stronger than the Vancomycin is there?
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
"LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/2/2009 10:41 AM (GMT -7)   
There is evidence that treatment with probiotics — good bacteria that repopulate the gut — makes antibiotic treatment more effective and prevents relapse. Saccharomyces boulardii appears to be particularly effective, although good results have been seen with Lactobacillus species as well.

Not to mention, since us IBDers tend to have bacterial overgrowth issues (often why c-diff can be an issue for us) a good probiotic should be taken daily and indefinitely (flaring or not, c-diff or not).

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 9/2/2009 10:50 AM (GMT -7)   
I do take acidopholis every day in large quantities. Do you buy "Saccharomyces boulardii" under that name or is it under a different name?
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
"LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/2/2009 12:14 PM (GMT -7)   
Saccharomyces boulardii can be purchased under the brand name Florastor. Some docs will actually prescribe it. I'm guessing it can also be purchased at health food stores under other brand names.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/2/2009 1:03 PM (GMT -7)   
Oh, you poor thing. I completely understand how you feel. My husband suffered with c-diff for too long last year - basically from March to December, and he had a bad crohn's flare up at the same time as well. We had a perfectly horrid time dealing with it. But he did beat it - he beat the crohn's with remicade and prednisone, and c-diff with lots of vancomycin, vsl#3, florastor, and lots of SCD yogurt.

My husband was diagnosed with c-diff in the first week of March last year, and thereafter in April he was diagnosed with Crohn's. He was so immunosuppressed with prednisone and remicade, that his c-diff came back when he was still even taking vancomycin! So, they knew they needed to lower his steroids before they could try to wean him off the vancomycin. When he was down to 10 mgs of vancomycin in Sep last year, they stopped the vancomycin, and within 10 days, it came back, so back on the vancomycin he went. The next time they stopped the vancomycin, my husband was completely off the steroids, and this time, it didn't come back. It has stayed that way since - so he's been c-diff free without vancomycin since Jan 1st.

The plan if it came back again after stopping the vancomycin, was to pulse taper the vancomycin. The infectious disease doctor told us that that was the protocol. You try to stop the vancomycin cold turkey twice, and if it comes back again, the next time you try to stop it, you pulse taper -eg. 6 days on vacomycin, one off for a week; 5 days on vanc, 2 off for a week, etc, until you get to taking no vancomycin. The idea is to let the spores become bacteria that vancomycin can kill, that way getting rid of the spores slowly.

Also, I believe for my husband, florastor, vsl#3, SCD yogurt, and avoiding all sugars, and going very light on the carbs, also helped defeat c-diff. Good luck, I hope our experience helps you.

PV

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 9/2/2009 1:23 PM (GMT -7)   
What is "vsl#3"? I appreciate you sharing your experience. I may have hope after all. It really does suck and I'm flaring with the Crohns too. Not sure which brought on which, if you know what I mean.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl, Vancomycin & Entocort
"LIFE IS NOT HOW YOU SURVIVE THE STORM, BUT HOW YOU DANCE IN THE RAIN...."


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/2/2009 2:25 PM (GMT -7)   
vsl#3 is a probiotic, with 450 billion live bacteria per packet. It is the most potent probiotic on the market, albeit potently expensive too. But I think it has helped my husband. I also think cutting down on the carbs while taking vsl#3, and florastor in plenty, I think helped my husband get off the vancomycin.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood

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