Is my doctor crazy?

If you have had or are considering an FMT please share your experiences here.
STS-0
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Is my doctor crazy?

Postby STS-0 » Sun Apr 09, 2017 11:13 am

So I've had recurrent C. Diff 3 times now, and I'll probably test positive for a fourth time tomorrow. Treated with 2 weeks of Vanco each time. Each time it came back. My doctor wants to do an FMT, but he says that per FDA regulations, he cannot do a FMT until I am *currently C. Diff positive,* as in just tested yesterday, not just tested a week ago.

Obviously this means I won't have time to do antibiotics to kill off the C. Diff prior to the FMT. This doesn't sound right to me. I know you can't be on antibiotics during an FMT, but why wouldn't he want to kill off as much C. Diff as possible beforehand, wait a few days, and then do the FMT?

He says that this is what the FDA says to do. I feel that he may be misunderstanding this. Any input? Is there any way for me to reach out to the FDA to confirm or deny this for my doctor?

I literally had to completely forgo doing an FMT last time for the sole reason that, because I couldn't take off work that same week for an FMT, I needed help fast so I was started in antibiotics instead. It looks like it will be the same way this time because I cannot take off work this week, so unless I can convince my doctor that it's okay to do the FMT AFTER the antibiotics, it looks like another ultimately pointless round of antibiotics for me.

Davidtm
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Re: Is my doctor crazy?

Postby Davidtm » Sun Apr 09, 2017 11:37 am

I was told by my doctors that antibiotics must be used before fmt to kill off as much of the bad bacteria as possible and create space for the fmt to seed the colon. Then it's a race for that new good bacteria to beat c diff in dominating the colon.
I was also told fda allows fmt provided the recipient is aware of its experimental status and possible risk factors involved. And that it is to be used in refractory or recurrent cdiff. I was not required to provide a positive test the day before the fmt. I don't know if what you're dealing with is hospital policy or coming from missinformation. If there are guidelines from the fda you could try showing them. A second opinion or a more experienced fmt dr might be beneficial too.
Good luck and hope you can work it out to get your fmt.

STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Sun Apr 09, 2017 12:58 pm

Where would I find the FDA policy on FMT?

In addition to being prohibitive to my work, I'm also really afraid that an FMT sans antibiotic intervention beforehand would fail.

beth22
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Re: Is my doctor crazy?

Postby beth22 » Sun Apr 09, 2017 1:29 pm

I have never heard that. Protocol is to do the antibiotics prior as you mentioned. You might try calling a major university hospital in your area if you can't reach the FDA and see what guidelines they follow.

STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Sun Apr 09, 2017 1:49 pm

I'm so unbelievably pissed at my doctor right now. So sick of this.

roy
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Re: Is my doctor crazy?

Postby roy » Sun Apr 09, 2017 2:53 pm


STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Sun Apr 09, 2017 6:46 pm

Roy -that site asks me for a login.

amyc
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Re: Is my doctor crazy?

Postby amyc » Sun Apr 09, 2017 9:37 pm

Perhaps you guys just aren't communicating properly? You should take vanco before the FMT, but lots of doctors won't start the planning for FMT until a third or fourth relapse confirmed by testing. If you do test positive again I would ask for meds followed by FMT 2 or 3 days after you finish them. I can't imagine your boss wants you at work with active C diff? Hopefully your doctor misunderstood what you were saying about your work schedule?

NanciT
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Re: Is my doctor crazy?

Postby NanciT » Sun Apr 09, 2017 9:45 pm

There are many physicians that will NOT do FMT's do to the regulations the FDA put on them. My last two GI's would not do them at all, despite my 5 relapses. After I had a 3 month Vanco Taper, went on Dificid for 10 days then another relapse and he essentially said to find another GI. This was at the end of 2014 but from my understanding he still will not do them. He had in the past but the FDA put more regulations right about that time.

I convinced him to give me a DIficid taper while I was on a waiting list for the only GI I could find near me. By the time I got in, he wanted me to finish the taper...and it worked.

Some doctors are reluctant to do them, I think it's has changed a little in the last few years. Maybe you should consider another GI? One who is more familiar with CDIFF?

NanciT

roy
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Re: Is my doctor crazy?

Postby roy » Mon Apr 10, 2017 3:41 am

It's free to join that site.
Lots of info on there that's meant for Drs.

STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Mon Apr 10, 2017 12:16 pm

It might be beneficial for me to consider another GI who is more experienced with FMT. My doctor and I are not having miscommunication, unfortunately. This is now my 4th relapse. His exact words are 'We cannot do FMT if you respond to antibiotics.' And his definition of 'respond' is 'improve to the point of solid stool while on antibiotics' not 'C. Diff negative after antibiotics.' (Obviously...because I never have been C. Diff negative after antibiotics....)

Is there any way to do a solid stool test?? He says there isn't.

STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Mon Apr 10, 2017 1:22 pm

Does anyone know where I can find the FDA regulations on FMT? Can I contact the FDA directly for guidance?

Rosie93
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Re: Is my doctor crazy?

Postby Rosie93 » Mon Apr 10, 2017 9:38 pm

I finished a course of vanco and tested positive right after. I wasn't put on antibiotics again and had the FMT probably 3 weeks later. I was negative for cdiff following my FMT.
But my cdiff never improved while on antibiotics. The symptoms were persistent throughout both courses of antibiotics. I also advocated that it was clear antibiotics were not working and I wanted to treat with FMT. The more antibiotics you take, the worse state your stomach is going to be in - From my experience, I would not want to take any more than you already have. The FMT will probably work, mine did.

STS-0
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Re: Is my doctor crazy?

Postby STS-0 » Tue Apr 11, 2017 9:08 am

Rosie93 -how bad were your symptoms when you did the FMT? Were you able to hold the donor stool in?

Rosie93
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Re: Is my doctor crazy?

Postby Rosie93 » Tue Apr 11, 2017 9:32 am

Normally I had been going to the bathroom around 6 times a day. I was able to keep the donor stool in for two hours I would say. They made me stay at the hospital for the first hour then I came home and slept for another hour, went to the bathroom when I got up but it was mostly only water.


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