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C. Diff questions...a lot!

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Ulcerative Colitis
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Posted 6/17/2014 7:03 PM (GMT 0)
Hi everyone. Sorry for creating the new post about c.diff, but by reading all info i got even more confused.
I got diagnosed with c. diff after, I believe, my GI prescribed me Cipro and Flagyl (I had high fever after colonoscopy). No, I started Vancomycin 125 mg 4 times a day for 14 weeks. Now all my questions:
1. What a the chances for reoccurrence, and if it will, should I continue stay on antibiotics?
2. Will it be covered by insurance for second…third, etc course of antibiotics?
3. Will the fecal transplantation help, and how easy to get it in US? Specially NY area…where?
4. Most important, how contagious is it? I have two small kids and hubby who we are sharing bathroom with. I try to clean it all the time, but I’m paranoid with kids sticking their hands everywhere!!!!
5. And last, but not least, I’m scarred to imaging how my UC will react after all these bacteria and antibiotics, please share your experience.
And, of cause, I want to thank this group who advise me to get second opinion, since I’ve been thinking and told by my GI that it’s just UC in flare!!!
Posted 6/17/2014 7:54 PM (GMT 0)
Vanco is the best antiboitic to use to treat C.Diff, all the others are not nearly as affective. If your GI prescribes it and it is on your Insurance's Formulary then you'd probably be covered; especially since you received it all ready.

I wouldn't worry too much about other Non-IBD'ers getting sick with C.diff, you don't hear that happening too often, it's people with IBDs, other auto-immune diseases and weakened immune systems that can't fight off C.diff. But it is a good question to ask your GI.

I don't know much about FT since I chose to have my colon removed before the FDA started to recommend FT for recurring C.diff as a treatment. The 2 big IBD-Centers in NYC are Mount Sinai and NY Presbyterian--Cornell (Weill Cornell Medical College -- IBD Center). I go to the NYP Cornell and they have a great facility there, I use to go to MT Sinai until my GI switched over to NYP. I like NYP Cornell much better than Mt. Sinai.

It's hard to tell about UC & C.diff, I've had both a flare and C.diff at the same time, C.diff mimics a UC flare but it also can intensive it and you can't tell what happens with the UC until you are negative for C.diff.
Posted 6/17/2014 8:27 PM (GMT 0)
I've been on vanco for a few months- every time I try and taper off, my c siff symptoms come back. I think vanco is mainly used just for c diff. I haven't had it real any havoc on my system or my colitis at all. Hope u feel better soon.
Posted 6/17/2014 9:24 PM (GMT 0)
There's a GI at Cornell now who specializes in treating recurrent C. diff and he does administer FMT, but not as a first step. His name is Carl Crawford: http://www.weillcornell.org/cvcrawford/

My experience is a bit different because I didn't have a C. diff infection until after my colectomy, but I had it once, treated successfully with vancomycin, then I had a recurrence about eight weeks later. That didn't respond to vancomycin so it was treated, again very successfully, with Dificid. Insurance covered everything, but Dificid is quite expensive (seems like just a few years ago it was vanco that we were calling "so expensive", sigh) so I needed a pre-authorization letter from my GI in order to fill the prescription. Knock wood it's been a few months now and I'm OK.

FMT can be very effective against C. diff but people don't realize that FMT can have other lasting side effects. Many previously healthy patients develop IBS after "successful" FMT. I'm not saying it's not an amazing treatment -- it is, and it has saved many colons -- but if you can successfully treat your C. diff with a short course of antibiotics, I believe that is preferable. My GI is very progressive and I asked her if I should just go ahead and do FMT now rather than risk recurrences and she said definitely not yet, because of the potential longer lasting quality of life issues.
Posted 6/17/2014 9:37 PM (GMT 0)
c.diff for me:
2 weeks at vanco 125
10 days vanco 250

6 days in at 250 vanco:: still knew it was there.... started Culturelle 3-4x a day and S. Boulardi 1x a day (2 made my stomach hurt.) (popular brand is Florastor )

This in combo with lots of water, low residue diet and Vanco.... BAM killed it. still take culturelle religiously. and should get back on s, boulardi since I'm 1.) in Hospital and 2.) on flagyl/cipro.


Also::: VERY CONTAGIOUS DISEASE
PLEASE clean your toilet with REAL LIQUID BLEACH after each use. and talk with your family about proper handwashing and being extra careful.
Clean your sink/toilet/door handles with lightly diluted bleach solution. CLEAN EVERYTHING. Please.

(my humble opinion.... backed up by experience and facts too!!)
Posted 6/17/2014 9:39 PM (GMT 0)
FMTs won't cause IBS unless the donor has "stealth" pathogens. Pick the right donor, get him/her screened and cure your c. diff (95%+ efficacy rate), and possibly cure your UC at the same time. Two birds in one stone kind of deal.

It is the other way around: stay on antibiotics and suffer the long term consequences - autoimmunity and infections. The recurrence rate for c. diff with antibiotics is roughly 1 in 3. It's not a one time deal like FMTs are.

Find an educated GI, find the right donor and get it over with. Don't play around with c. diff (or antibiotics). Refer to the bristol stool chart on what constitutes to good bowel health.

Best.
Posted 6/17/2014 9:43 PM (GMT 0)
Side note: never had recurrence... that was...March... I think. No symptoms and 5 neg tests since. :)
Posted 6/17/2014 11:29 PM (GMT 0)
Ok, no im scarred! For kids! Since i've been having it for almost three month, what if they got it? Before i knew what it is? Should I test them?
Posted 6/18/2014 12:07 AM (GMT 0)
Your kids would be crapping their brains out so you would notice pretty quick if they had it. My mom caught it too and i felt so bad. I gave her my old prescription of flagyl and that cleared it right up. I needed 7 days flagyl, 14 days vanco and then 1.5 monts of vanco again.
Posted 6/18/2014 12:08 AM (GMT 0)
Like yourself, you would know if your kids have it. Even though C-Diff is listed as contagious it really isn't very easy for a healthy person to come down with a full blown C-Diff infection. Most everyone has C-Diff in their systems but their good bacteria keep it in check. The bad thing is your kids could have a certain level of C-Diff in their system that does not bother them but if they were to get sick with say a sinus infection and had to go on antibiotics, then their C-Diff could get out of control if the antibiotics kill off enough of the good bacteria that had been keeping the C-Diff in check. This could happen months or years down the road. Testing them would probably be a waste of time unless they are having symptoms such as yourself. You may need to have a higher level of awareness though. If they are old enough you might want them to take some regular probiotics and increase that considerably any time they have to go on antibiotics. I would also make sure they never take any antibiotics at all willy nilly unless you know for sure they are fighting something where antibiotics are needed.
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