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Becoming frustrated, treating symptoms. Crohns and CDiff

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Crohn's Disease
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Posted 7/31/2014 1:05 AM (GMT 0)
Need advice! I have been diagnosed with Crohns disease for almost 2 years. I finally reached remission around January, until recently. I went though a crazy bout of events starting with a dental abcess, to thrush to CDiff. I have been taking vancomycin for the last nearly 5 weeks and feel like I have had no success. I was doing better when I was taking it 4 times a day for 4 days for 2 weeks, I went off of it completely and the symptoms started flaring back up, the dr put me back on a taper, of 4 times a day for 4 days, 2 times a day for 7 days, 1 time a day for 7 days etc. Well, I did great on the 4 times a day, OK on the 2 times a day and was about to start the once a day when symptoms came back yet again. One point last week I was in the bathroom 9 times. She also gave me colostyamine for when the diarrhea flares. I have been home sick and in so much pain on my right side ( crohns is in the ilium) for the last 3 days, and have now lost 8lbs. She started me on prednisone yesterday, which I've started but I really hate that stuff. Has anyone else had this many problems with Cdiff? I almost feel like at this point we are just treating the symptoms and not getting anywhere with the cause of the symptoms. I felt great in remission (minus being extremely tired, and able to sleep 16+ hours a day, does anyone else have this?) I dont know what to do anymore at this point, I have a life to live and a full time job,and feel like I am losing hope. Any help is greatly appreciated
Posted 7/31/2014 1:37 AM (GMT 0)
Hi KaitD,

I don't have much advise for you but my son went through a horrific time with C-Diff. Flagyl and rounds of Vancoymycin including long tapers. Felt hopeless as we were doing everything that we could to try and get rid of the C-Diff. The house was disinfected from top to bottom, laundry sterilized but it took around 6 months before he finally got rid of C-Diff. Luckily his crohn's stayed under control during the time. He also got thrush from all of the antibiotics and he felt completely drained and exhausted. If he gets it again he is going to ask his doctor about a fecal transplant, lots of people seem to have great success with the fecal transplant both for C-Diff and crohn's.

I hope you start to fell better soon.
Posted 7/31/2014 1:42 AM (GMT 0)
Thanks for the reply. I am hoping this doesnt last 6 months. I've read about the transplant and admit as gross as it sounds, having all this go away sounds amazing!
Posted 7/31/2014 2:15 AM (GMT 0)
Hi. I'm sorry you are soo ill. My husband also had a very lousy time with cdiff and crohns at the same time. He had a recurrence of cdiff 4 times before over the course of the year. He's now been cdiff free (knock on wood) for 5 years.

I suggest starting florastor ASAP. It contains a yeast that fights cdiff. It'll help keep cdiff at bay after the antibiotics are stopped. My husband still takes them everyday just to help prevent cdiff. Also, you could have a concomitant crohns flare going on as well. So you may need to be on steroids at the same time (a colonoscopy / blood test for inflammation will help figure out if this is the case).

Also, cdiff can cause post infectious IBS, where your bowel is more sensitive to food (even food that you used to be able to tolerate before). I suggest eating a very plain and low residue diet and slowly adding foods back into your diet over time.

I hope you feel better soon!
Posted 7/31/2014 2:19 AM (GMT 0)
Thanks. She put me on the prednisone taper now because she thinks its a crohns flare as well. I usually feel great after a few fays of prednisone but HATE the side effects. This is my first time with cdiff, and hopefully the only time. I'm glad to see I'm not the only one that had so many issues with it. Is florastor otc? I am currently taking Pro 5 from plexis
Posted 7/31/2014 1:28 PM (GMT 0)
Yes, florastor is OTC. It's expensive, though, like a dollar a pill. My GI recommended 4 pills a day to me. Have you considered looking into a Fecal Matter Transplant? I had one 3 months ago. Best decision I ever made, health-wise. I had c. diff. 8 times in three years or so. These last two weeks I had to take abx for a UTI and was terrified I would get c. diff. again because in the past, any antibiotic for any amount of time made my c. diff. act up. But this time around, nothing!
Posted 8/2/2014 3:07 AM (GMT 0)
Florastor for sure!! 4 per day (1000mg total) Continue for 30 days past negative c-diff test.
Posted 8/2/2014 2:55 PM (GMT 0)
KaitD, where do you live? The reason I ask is that fecal transplant (done at the hospital) works better than anything for C Diff. The procedure is done via colonoscope and you'll be out for the count so won't feel anything. He in the UK they're used when antibiotics fail but as the treatment is so successful it's fast become first-line. People make a full recovery very quickly and tend not to contract C Diff again. Do a quick google search for c diff, fecal transplant and you'll find tons of successes.

Kev
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