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told FT is not for me?

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Ulcerative Colitis
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Posted 8/23/2013 11:12 PM (GMT 0)
I have mostly a hate relationship with my gi. Basically not many other options. Anyways, he's my second doctor that's been trying and failing to get me out of a flare since march 2012. I had cdiff for the first time from early feb 2012-march, when I was finally tested and diagnosed and did 10 days vanco. Got it again July 12, went to hospital the 14th and got a negative test after 20days vanco. I asked today about fecal transplant, either to do it now or in the future since I assume I'll get cdiff again soon enough and was told FT is only for people who don't respond to antibiotics at all and that they wouldn't even consider it for me. Is that true? Because I feel like it's not...
Posted 8/23/2013 11:53 PM (GMT 0)
IMO, FT is way more successful for Cdiff and has less side effects. I think you should seek out a new Dr...as FT has an over 90% chance of success in which antibiotics are much lower success rate w/ a worse side effect profile. Just my 2 cents.
B
Posted 8/24/2013 12:55 AM (GMT 0)
I didn't even ask my GI when I started FT.

In the beginning of all this, I asked my GI if diet or alternatives could help and she said; "Diet has nothing to do with it, don't you think I would tell you if diet would make you better?" I realized she was only good for prescription medicine. Alternative methods and ideas were off the table. She's a nice lady, but her training is in meds not cures.

Then I tried the SCD diet beginning in June along with the Uceris I was taking. My GI told me Remicade was the next step starting in the fall. Beginning August I discontinued Uceris, because I saw what a difference SCD made for me. Then I started FT last week. In the bathroom today I saw a solid BM in the toilet. It's not perfect. BUT I could not imagine living like I am right now with only 2 BM's in one day without taking meds just a few months back. It's far from the good ol' days but I'm thinking this is a heck of a lot better than the alternative. Keeping my fingers crossed this is going to work out for me.

Every one is different, but I say if you feel it in your heart, and you have a healthy, willing donor, just go for it.
Posted 8/24/2013 1:14 AM (GMT 0)
FT cleared my c.diff immediately. I didnt need to try any antibiotics either.
Posted 8/24/2013 1:28 AM (GMT 0)
Adventure, 2bms a day with every med possible sounds like a dream.

I think my confusion lies where everything I've read says FT is for recurrent cdiff vs my doc saying it's for someone with one infection that never gets a negative culture. I know mine's going to come back, as I'm not particularly convinced it's been gone.

I've found an osteopath to call next week, and I guess I'll have to find another gi. I'm going to keep this guy on the side in the mean time for the cheap remicade infusions, even though I don't think they're helping enough to be worthwhile.
Posted 8/24/2013 2:34 AM (GMT 0)
I personally disagree with what you were told. I think FT could very well be the front-line treatment for c diff but unfortunately, right now, it's still in trials (as far as I know). I think they say what they say because they are unable to administer FT legally without you failing all other treatments. They shouldn't lie. It's not only a useful treatment in those cases, it's always useful, it's just not something they can offer. They probably don't want you to go do it on your own for one reason or another. Maybe safety or maybe they want to be in control. Not sure why people do what they do.
Posted 8/24/2013 5:31 AM (GMT 0)
ya, your gi is a dumbass !

I think everyone should do some ft's - white people, black people, short people, people with goatees, people who work at dry cleaners - why should we have all the fun :-)

Posted 8/24/2013 5:42 AM (GMT 0)
LOL Soystud...., but seriously yeh you can do FT and maybe get lucky and hit two birds with one stone (get rid of c diff and UC).
Posted 8/24/2013 12:00 PM (GMT 0)
I agree with what others have said, your GI is an idiot. He does not know anything about FT. If you have any donor, I would suggest to try by yourself.

Those how have tried FT, hopefully will post more about how to find a donor and how to exactly do it.
Posted 8/24/2013 12:24 PM (GMT 0)
We did home FT for DD when she got C.diff. We did this after 14 days of vancomycin. We were told, to get it done by a physician it should be refractive c.diff and they will do this only if so many rounds of antibiotics fails. We did this as our choice and YES, FT with the help of SCD diet she is remission with perfectly formed stools once a day.
Posted 8/24/2013 1:12 PM (GMT 0)
It's good to hear other people think he's a moron too. I will look into doing it at home-didnt even realize that was an option.
Posted 8/24/2013 4:49 PM (GMT 0)

Hi, I am new to this site. So I am not sure if I am responding or posting correctly.  This is my 3rd summer since 2011 I have C-Diff. I was told my GI doctor that in 2012 after my colonoscopy that I had Ulcerative Colitis. I was given Lialda Sept. 2012 and up till July 2013 I was responding to the medicine, 4 pills per day. I have had bloody stools the whole year and thought it was because of my hemorrhoids but the GI doctor told me that the bloody stools were coming from the colitis. I did a test for C-Diff in July 2013 and it came back negative. I did a colonoscopy on Aug. 19th and my doctor told me I have Proctitis which is inflammation of the rectum and he did took stool then for testing for C-Diff. He told me yesterday that the test came back positive for C-Diff and gave me a prescription again for Flagyl. I have had C-Diff now for 3 times. I am very upset and frustrated. I will not take Vancomycin because I lost some on my hearing and have tinnitus in 2006 in my left ear from I think an antibiotic ending in mycin. I read the side effects for Vancomycin and way down one of the side effects is hearing loss. I don't need to lose more or my hearing so I take the Flagyl which I took last summer. I do have side effects from the Flagyl but what can I do.

My GI Doctor says I can get a second opinion because I mentioned the F.M.T treatment which I told him had much success. He wanted me to use the flagyl again.  I am going to make an appt. with another GI Doctor that he gave me who is closer to where I live and see what he says about the C-Diff and my colitis. Does anybody who has had the F.M.T. by a doctor in NYC and is cured, would you please give me their names?  Also, I was reading that a probiotic Saccharomyces Boulardii is helpful for preventing C-Diff in returning? Does anyone know about this? Any advice I would definitely appreciate. This infection and condition is exhausting both physically and mentally. It is hard to work with also!! Thank you very much. My doctor has taking now 2 Apriso daily for the colitis instead of Lialda. I am not taking the Apriso today or tomorrow as the doctor told me I could stop it for a couple of days while getting use to taking the Flagyl.

Posted 8/24/2013 5:23 PM (GMT 0)
Serenity6. Why do you need to pay a doctor for something so many are doing at home for free?
Lack of donor? Just go get the saline solution, bottle, some Vaseline or lube, a small blender and get going? There' UTube videos that show how to do it. Do it this weekend if you have the days off. Seriously, the hard part just getting mentally prepared to do it. Once we started...the hardest part is timing the bms - haha.
Posted 8/24/2013 6:14 PM (GMT 0)
Have a look at my profile signature for how I did it. There's quite a lot of good literature on the web for how to do it at home too
Posted 8/24/2013 7:38 PM (GMT 0)
I did it at home for free also. I certainly didn't need the permission of my doc to try it. He knew nothing of it. I need to give it another try now that I am not in a severe flare.

Why would your doc have you doing something at home that is free that may help you, when you are currently going to his office and he is collecting payment??? Think long and hard on that one.
Posted 8/28/2013 5:44 PM (GMT 0)
Bump for Serenity 6
Posted 8/28/2013 8:35 PM (GMT 0)
FT has helped my son tremendously. I mentioned FT to his GI 2 years ago and he LAUGHED at me. The doctor who performed my son's FT's is in Florida and I DIDN'T get permission from our local GI before we went there. My son decided to do the FT's because medication was simply not working. Our local GI still doesn't know that he had the FT's done, but I can't wait to tell him about how much it has helped. From a professional standpoint, these closed-minded docs better get on board before the ship sails or they are going to get left behind.
Posted 8/29/2013 4:11 PM (GMT 0)

Adventureuc said...
I didn't even ask my GI when I started FT.

In the beginning of all this, I asked my GI if diet or alternatives could help and she said; "Diet has nothing to do with it, don't you think I would tell you if diet would make you better?" I realized she was only good for prescription medicine. Alternative methods and ideas were off the table. She's a nice lady, but her training is in meds not cures.

Adventureuc, the diet thing really struck a nerve with me. We're only two weeks into this, but much prior experience w/ other ills & there is no doubt - your GI is not a true physician - she's a pseudo-chemist, and maybe a one-woman-prescription-mill. Any MD who considers diet an "alternative" really does have a couple of cards missing.

Hope you can find a new doc - they are out there!
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