Relapsing again I think?

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NS789
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Re: Relapsing again I think?

Postby NS789 » Tue Jul 07, 2020 5:48 pm

Has that chaser worked for a lot of people, Roy? I've never heard of it before but I'm intrigued.
32 y/o female. Got C. diff in Feb. 2020. Prescribed Flagyl (10 days), then Flagyl again (4 days), then Vanco (10 days), then Dificid (10 days), then Dificid again (10 days), then a Vanco taper (5 wks), then a Dificid taper (2 mths) and finally recovered.

phir91
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Re: Relapsing again I think?

Postby phir91 » Tue Jul 07, 2020 5:51 pm

Cdiff really is just awful, my thoughts are with you. You will get through it.

LHutz
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Re: Relapsing again I think?

Postby LHutz » Tue Jul 07, 2020 5:57 pm

One other thing to consider, elective procedures are being conducted in Southern California right now. But that could change if Corniavirus patients cause hospitals to reach capacity. At that point they'd stop elective procedures again. Point is, if you're an FMT candidate, I'd push really hard to get it done ASAP, while they're still doing elective procedures.

Ali-Mar
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Re: Relapsing again I think?

Postby Ali-Mar » Tue Jul 07, 2020 7:48 pm

Maybe I m getting little ahead of myself and too early to get excited, the UC San Diego Gastero scheduling team just called me. I'm scheduled for FMT Tuesday, July 14h. But... there is a big BUT...they still have to confirm if they can order the FMT supplies.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: Relapsing again I think?

Postby roy » Wed Jul 08, 2020 10:46 am

Usualy an FMT involves a minimum of 10 days on c.diff meds, probably vanco, to knock back the active c.diff.
Followed by 48 hours of no meds including no probiotics and a full colonoscopy type clense the evening before the procedure.
Not something that done at very short notice because the preperation for it is a very important part of the procedure.

Ali-Mar
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Re: Relapsing again I think?

Postby Ali-Mar » Wed Jul 08, 2020 11:27 am

Roy, that is my concern too. I mentioned that to her office scheduler yesterday; that by the time I have the FMT, I will be on Dificid only for 7 days.. She is checking with the Dr... I will call the office today see if we should push it out by few days to complete the Dificid dose
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

D1dad
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Re: Relapsing again I think?

Postby D1dad » Wed Jul 08, 2020 2:03 pm

Dam man I hope this all pulls together for you. I guess I came away pretty unscathed compared to many others. I did talk to a nurse in Cleveland last week who battled it for almost 2 yrs before she got an FMT at the Cleveland clinic. She said she was literally better that day. I’m pulling for ya, no doubt. I too have kids about your age and last year was pure hell. 2020 just puts the cherry on top.

Ali-Mar
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Re: Relapsing again I think?

Postby Ali-Mar » Wed Jul 08, 2020 2:41 pm

Thanks, D1dadd, hope all goes well with the toe infection. I called UCSD again, they are checking with the doctor to see if I have to be on med for a full 10-day dose to prep for the FMT and if so they will push out the appointment. All this is very confusing, you would hope the folks scheduling FMTs would know that. And more confusing, they think (hope) they will have the FMT supplies, but not 100% confirmed yet.

Is it normal to order FMT for every procedure or do they keep some supplies local in their inventory?

Why we as patients have to do so much work to try to figure out the best way to do this... shouldn't the healthcare providers manage all this?

More bad news finished two full days of Dificid but still haven't seen any improvement. Last round of Dificid I saw significant improvement after 3 pills of Dificid. Hope it didn't develop resistance to Dificid
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

beth22
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Re: Relapsing again I think?

Postby beth22 » Wed Jul 08, 2020 4:15 pm

When I had FMT years ago the guidelines said a minimum of 4 days of vanco (Dificid was not out yet). The 7 days may be enough, but follow your doctor's protocol. You don't want to do the FMT for nothing. They are probably getting the stool from OpenBiome. Most hospitals use them. I know the ones in Los Angeles do. They won't let you use your own donor.

Ali-Mar
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Re: Relapsing again I think?

Postby Ali-Mar » Wed Jul 08, 2020 4:54 pm

Thanks, Beth,
My doctor's nurse called me and said I need to take it for 7 days, and stop 24 to 36 hours before checking in. Which is perfect, 27 hours before checking in I will complete 7 full days .. The Dr responded to my email and said, "we are short of FMT supplies, but I think you will be "OKAY." The statement saying, " I think you will be okay," makes me very uncomfortable. What is that mean? Is she saying she is going to use less than a standard stool because she does not have enough, but I will be okay, or is she saying she does not know if there are enough supplies yet? Am I reading too much into her statement?

how many containers of donor stool do they use?
Last edited by Ali-Mar on Wed Jul 08, 2020 5:15 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
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Re: Relapsing again I think?

Postby roy » Wed Jul 08, 2020 5:08 pm

They use a whole bucket full!

beth22
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Re: Relapsing again I think?

Postby beth22 » Fri Jul 10, 2020 1:23 am

If it is OpenBiome, they have a standard container that has been frozen. It is always the same amount I believe. I would not worry about the quantity so much. When people use their own donors - family or friends, the amounts vary quite a bit. You don't need that much to properly "seed" your colon. You could always call the nurse and ask for clarification.

D1dad
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Re: Relapsing again I think?

Postby D1dad » Mon Jul 13, 2020 9:59 am

Keep us posted. My GI performed them on a regular basis, although more recently he was using the 60 or so pills of poop. Less of a chance for something to go wrong I guess. Although I have a feeling after about the 3rd pill I’d spray the wall and anyone in the room with those poop pills. Seriously I hope you can put this hell behind you.

Ali-Mar
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Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 13, 2020 10:10 am

Thanks D1dadd, I am doing the FMT via Colonoscopy tomorrow, I have to do the liquid diet and the prep today. I am very anxious and keeping my fingers crossed, this bug is a monster and feels unbearable!!! I had to do a COVID test yesterday as part of prep for the procedure, it was negative so I am good to go, in that sense
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

D1dad
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Re: Relapsing again I think?

Postby D1dad » Mon Jul 13, 2020 10:41 am

I can’t imagine. I mean I can, because I went though it and had to take an additional 7 days of meds to kick it, so I guess I didn’t really relapse. I just couldn’t imagine going through multiple meds and ending up with an fmt. The nurse I was speaking of was under 50 and wore diapers to work and fought for 2 years. She said she had the procedure in the morning and felt almost 100% that night. She said she literally felt like she never had cdiff. Prayers my friend!


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