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Posted 4/28/2015 4:19 PM (GMT 0)
Carl Crawford at Weill Cornell in NYC does FMT for C. diff: http://weillcornell.org/cvcrawford. If you can't travel to him his office might be able to refer you out to a doc closer to Pittsburgh.

I've had C. diff with my pouch twice, first time treated with vancomycin and it came back, second time I used Dificid and no recurrence now for over a year.

Hope you can get it under control.
Posted 4/28/2015 4:27 PM (GMT 0)
I've had c.diff in my pouch once and a couple of times when I had a colon. C.diff in my pouch felt totally different then in my Colon; mostly some gas and a little pain but I knew that there was something going on in my pouch. C.diff when I had a colon was BRUTAL.
Posted 4/28/2015 5:46 PM (GMT 0)
Bananagirl: I have not had a cdiff infection in the past but have been taking Florastor for months now so maybe that has helped. I do suspect that my UC was prompted by a round of antibiotics though...
Posted 4/29/2015 1:37 AM (GMT 0)
ks, i haven't looked at cleveland clinic before. i will have to call the gi department about it if my doctor is still so against it. also, i dont mean surgery for c diff. i mean surgery for UC in general- just getting my colon out.

pluot, yeah, nyc is too far but i should call there, too. you'd think more doctors would be open to ft if the patient has had c diff 4 times. i dont understand the negative attitude about it!

vanco always knocks it out for me thankfully. it's the meds im on that keep bringing it back. i just feel like im out of options at this point for my UC treatment if i can't take biologics or enyvio.
Posted 4/29/2015 2:52 AM (GMT 0)
Sorry to hear about all this Banana! I came down with Cdiff while I was on Remicade, so I most certainly feel your pain. The very day it was confirmed that I had Cdiff, my GI said that if the antibiotics didn't work, he would opt for FT. Since he seems so open to it, I can ask if he knows of any docs in your area that would be as willing. Also, I am from Pittsburgh too and have a family member who works in the medical field...so I can ask her if she might know an open minded GI nearby. Hang in there!
Posted 4/29/2015 4:27 AM (GMT 0)
That is so awesome of u, ucwhat! Yeah, any info would be helpful.
I wish i had ur gi!

Im not feeling great right now- obviously- and always have so many side effects from vanco. I am peeing an insane amount- over 30x today and im not sure why. I have so much pressure on my bladder that it hurts to walk to the toilet.
Posted 4/29/2015 4:30 AM (GMT 0)
I think my GI would do a FT on you if you have c diff repeatedly. She's pretty open to it. You know where to find me if you want info :)
Posted 4/29/2015 1:04 PM (GMT 0)
Just wanted to pop in and say my husband is going through this right now too.

This is his 4th time with c diff in just over a year. Started Christmas 2013 and we're not even sure if it ever fully went way. Well, he did have several negative tests I guess. He is completely intolerant or allergic to flagyl so we always go straight to Vanco and it costs a lot, even with drug coverage, here in Canada.

He got diagnosed again in Feb and after two weeks on vanco he seemed OK... Then went on to have another positive test a few weeks later. It is very hard for him to get rid of. He's on 150mg azathioprene, 4g mezavant orally, 1g salofalk supp once a day, and double dose remi every 4 weeks. We know the aza/remi combo puts him at risk for these types of stubborn infections.

Have you done a vanco taper before? That is the only thing that worked for him last year. The research does say tapering and pulsing can be more effective at eradicating the c diff.

He also takes saccharomyces boulardii with AMAZING results. It has really been helping him with his c diff symptoms. Anyway, he's down to 250mg vanco 3x/day and he will continue to taper down for weeks to come.

Hope you can both kick this really soon!
Posted 4/29/2015 2:27 PM (GMT 0)
BananaGirl,

Have you ever tried Vanco with Flagyl at the same time? It is a treatment option, or I'd try Dificid just until you can make arrangements for the FT. I agree that FT would be your best option but it seems like it is going to be a process to find a doctor and get approved, meanwhile your C.diff persists.
Posted 5/2/2015 1:12 AM (GMT 0)
How are you making out on this front?

Also, on the news tonight was a short interview with a girl in the US. Her GI resorted to FT for recurring c-diff. She said she required multiple treatments before she had great progress.

Anyway, seems there must be a few GI's open to this.

Perhaps it's time to go GI shopping if you can.
Posted 5/2/2015 2:02 AM (GMT 0)
hey mark,

i'm doing okay. still bloated but not having constant diarrhea now. i started vanco on monday so today is day 5. my prescription is for 30 days but i doubt i will stay on it that long. the side effects just suck so bad. my left foot and right toes now have been numb and tingling since monday and it keeps traveling up my legs.

my problem isn't antibiotic resistant c diff. it's my UC meds. the vanco works every time so i think that's why it's freaking impossible to convince any doctor to give me a FT. i just need to figure out a UC treatment that won't give me c diff since my neutropenia from the meds is what opens me up to the infection.

i'm tempted to ask my gi for 5 ASA or something even though i haven't taken one in many years. it seems the biologics are out as well as entyvio. i still use my nicotine and imuran but i dont know if they are strong enough to keep me from flaring.
Posted 5/2/2015 2:30 AM (GMT 0)
does entyvio cause neutropenia? I always had low counts on 6mp. I will let you know how my results are next time I get checked. SHould be a few days. I haven't had a CBC since being off steroids for a period and being on entyvio.
Posted 5/2/2015 3:22 AM (GMT 0)
Frustrating...........
Posted 5/2/2015 3:57 AM (GMT 0)
What about VSL3-DS? Have you used it and will your insurance cover it?
Posted 5/2/2015 4:13 AM (GMT 0)
Nssg, the entyvio website said it increases your risk of infection and to not take it if you have an infection.

Ks, i only tried vsl ds once because the twenty day supply was $180. My insurance wont cover it since it is medical food. I couldnt afford to take it and didnt notice it helping but i was in a severe flare at the time. I wish it wasnt so darn expensive!

I bought a bottle of the vsl caps ($63 at target) a few weeks back when i had the diarrhea badly. It didnt help obviously since i had c diff but i plan to start it again once my vanco is done.

The only thing i can think of is staying on the patch and uppig my imuran dosage to 75 mg. i had liver toxicity on 50 mg 6mp so im not sure how that translates to imuran dose. I will ask my gi when i see him tuesday on his opinion.
Posted 5/2/2015 6:06 PM (GMT 0)
bananagirl I somehow googled c-diff forum and came to this fourm and your post. I have had 2 positive c-diff tests and have been on Flagyl, Dificid, and just got off of Vanco. It took my PC and GI drs at least a year to find out that I had it and I am not sure how long that I had it before that....I sort of fell through the cracks and no one had done a stool test except for blood. Of the 3 medications the Dificid seemed to help me the most. Presently I don't have symptoms but have only been off of Vanco for a week.
Posted 5/2/2015 8:08 PM (GMT 0)
hav-faith, yeah, doctors can be irresponsible with diagnosing. my first time with it, i was in the er begging to get tested and the er doc finally agreed. i needed blood when i was there so they admitted me to a room. when the regular gi doc came to my room, he wanted to start me on prednisone or send me home. he didn't think i had c diff. i told him i didnt want prednisone so he put in the computer for me to be discharged. literally, 5 minutes later, the nurse came to the room and said my sample was positive and i was staying put.

i havent tried dificid but might need to if this bloating and tenderness doesn't go down. i still look soo pregnant. it's been so long since i had c diff so i can't remember if i was bloated like this for so long.
Posted 5/2/2015 8:59 PM (GMT 0)
Hey banana! I just thought of something!

There is a relatively new antibiotic specifically for c-diff. I think I have the name written down in my book. I'm gonna go look it up and you can search for info about it/success etc etc. Maybe it could be an alternative to Vanco for you. Its made by a very small pharmaceutical company.

Give me a bit to dig through some papers.
Posted 5/2/2015 9:13 PM (GMT 0)
Hey Banana

It's called Dificid - and is made by a very small pharmaceutical company called Cubist Pharmaceuticals.

www.dificid.com is the website for it. Though I did notice on the prescribing pdf that the risk of Neutropenia is higher by 1%. So 2% for Dificid and 1% for Vanco.

Anyways - if you're stuck maybe ask around and see if anyone else has tried it with any success/less side effects etc.

Alternatively just come to Canada and get an FT................
Posted 5/2/2015 9:14 PM (GMT 0)
sure mark. thanks!!

i've only ever taken flagyl (which did absolutely nothing) and then vanco (3 times).

i'm honestly embarrassed to leave my house because of my stomach. i dont want anyone to ask me when i am due. i will absolutely cry. i can't even look in the mirror without wanting to barf!!
Posted 5/2/2015 9:25 PM (GMT 0)
Well it did say that long term results were better, but who knows really.

I was just going to say email them and explain/ask about Neutropenia because they are so small. Most likely you'd get some sort of a response.... but it turns out one of the Big Pharma companies just bought them 4 months ago... go figure.


In any case, worth looking into perhaps. I've never heard anyone mention it on here before and always forgot to post about it.
Posted 5/2/2015 11:58 PM (GMT 0)
Hi Bananagirl,
Join the facebook group, FMT support. It is a secret group on facebook and ask Tracy for a FT Dr in your area. They will help you and the site is phenomenal! I met one of my GI's on this site!
Also, it is my understanding that the only probiotic proven by a gov study to help c-diff is saccromycees boulardii. The gov study used the brand Florastor and 4 per day (1000 mg). That is what I used to finally beat my stubborn c-diff. Every walgreens and cvs carries it. I have been on months of antibiotcs for sinus infections and each time I restarted on four florastors and have never gotten c-diff again yet. Worth a try.

Hugs!

Post Edited (pmedic) : 5/2/2015 6:02:16 PM (GMT-6)

Posted 5/3/2015 12:16 AM (GMT 0)
mark, yes, dificid has been mentioned quite a few times on this thread. i will check with my doctor about it.

pmedic, i searched fmt support but no groups came up. is it under another name??

unfortunately, florastor is not compatible with my body. it took my bowel movements up to over 20x a day and tons of cramping and diarrhea. i do fine with renew life advanced immunity though. i'm taking culturelle, too.
Posted 5/3/2015 12:32 AM (GMT 0)
Bananagirl, I just asked them. They said since it is a secret group, I need to send you the invite so I will email you my name and you can send me a friend request them I can send you the link and they will approve it.
Posted 5/3/2015 9:00 PM (GMT 0)
Thats awesome pmedic... bout the FT group.

And it's crazy with probiotics how different people react to them. I have had my fair share of adverse reactions to even SCD yogurt at times. It's enough to drive one mad at times tying to figure out what works and what doesn't for you.
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