Stubborn c-diff case

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gm37
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Joined: Sun Jun 22, 2008 4:23 pm

Stubborn c-diff case

Postby gm37 » Mon Nov 13, 2017 5:43 pm

Hi, Everyone! Remember me? Anne from Kansas City?
I have a friend from a small town north of here. She is 42 and has been struggling with c-diff for a year. She has lost 55 pounds....weight at 84 now. She was treated at Mayo Clinic with a FMT. It failed. She is now in hospital getting nutrition and fluids. Been on Vanco 250 4X a day since August. She is testing positive and having D. The hospital has no clue what do do.
I told her to ask the doctor about upping the Vanco to 500. She tried Dificid earlier and relapsed while she was on it. I think they want to do another FMT but want her a bit more under control before they do that. Anybody have any other ideas??? It is tough to watch.
Thanks. Hope everyone is healthy.
Anne

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Stubborn c-diff case

Postby NanciT » Mon Nov 13, 2017 6:15 pm

Hi

We are hearing this more often on the site, that people are failing the first FMT. I would consider a DIfcid taper and also try and make sure the GI or ID has a great deal of experience with CDIFF.
Sorry your friend is going through this ordeal, but often second opinion's are important
NanciT

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Stubborn c-diff case

Postby MKW » Mon Nov 13, 2017 10:14 pm

Hi, this is heart-breaking to hear about your friend and very scary. I have been participating on this board since Fall of 2016, and around that time I remember reading about a few stubborn cases where people received what they called a "top down bottom up" FMT. Meaning donor stool was given by nasogastric tube and colonoscopy. You could type that in the search function on here, and the posts will probably come up. Since then I haven't seen anyone post about this. I can tell you since I had my FMT in March of 2017 (worked the first time - so far), that more people on this board than not have required more than one FMT. Doesn't fit the 85% success rate that is claimed. Sounds like your friend is in rough shape though, and they have to get the infection under control and knocked back before doing the FMT. I wish I had more to offer. I feel like this infection has been evolving and changing with people just in the time I've been on this board. I received my stool donation from Open Biome and so have many others. The donors are very healthy and well screened beforehand. So she needs to make sure if she receives a second FMT that it is not from the same donor since it failed - at least that's what my GI doc advises. Will pray for your friend. This infection is a living nightmare. - Melanie

beth22
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Re: Stubborn c-diff case

Postby beth22 » Mon Nov 13, 2017 10:44 pm

In most cases, I would not advise a top down procedure in addition to a colonoscopy FMT, but in her case, I think it may be the only way. I had it done. I'm not sure if it contributed to my SIBO, but it did pretty much clear the c difficile until I took antibiotics again. There has been much success with the double procedure. One doctor up in Canada used to do all her patients this way and had very good success.

georgina
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Re: Stubborn c-diff case

Postby georgina » Tue Nov 14, 2017 1:47 am

RDS infusion-Tampa does the FMT combo : bottom up top down and 40 pills.
Also how did she relapse while on Dificid? Did she tested positive while on it?

Mindy
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Re: Stubborn c-diff case

Postby Mindy » Wed Nov 15, 2017 6:16 pm

This is so sad to hear. I had a horrible case and lost 35 pounds in 10 weeks, too weak to walk, hair thinning, fast heart rate, fever etc. I had an FMT back in June 2015 from a doctor in Florida. I traveled from Michigan to get to him after he said he'd save me. I had FMT via colonoscopy and then 30 frozen pills the next morning. I've always thought the double whammy was what helped. I hope she finds a cure. In my prayers.


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