Relapsing again I think?
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Re: Relapsing again I think?
It is a relapse! Now I'm up to 4 BM 3 of them were only mucus and still going, Unfortunately, will start the treatment. This is a nightmare :-(
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
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Re: Relapsing again I think?
Really sorry to hear that you've relapsed again. Is your doctor willing to do an FMT at this point?
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Re: Relapsing again I think?
Certainly sounds typical relapse.
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Re: Relapsing again I think?
Spent most of the night in the bathroom, much more severe than the 1st relapse. So far over 11 BM in the last 21 hours, 6 of them only mucus.
Scripps my GI dr hospital does not have FMT supplies, waiting for consulting with GI at USCD or Sharp hospital, hoping will do an FMT.
Scripps my GI dr hospital does not have FMT supplies, waiting for consulting with GI at USCD or Sharp hospital, hoping will do an FMT.
Last edited by Ali-Mar on Tue Jul 07, 2020 11:26 am, edited 2 times 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
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Re: Relapsing again I think?
If you do need FMT it might be quicker and safer to consult a Dr that will use your own donor and not wait for openbiome.
Full stool screening and covid test.
Full stool screening and covid test.
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Re: Relapsing again I think?
I'm really sorry Ali-Mar. I hope you can get the FMT very soon and beat this illness once and for all.
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Re: Relapsing again I think?
So sorry your going through this. Unless you’ve gone through it, nobody understands it’s more than just the squirts. Dry heaving out your rear is only part of it. I still remember It like it was yesterday, the pounding heart, shakes and just an overall feeling that death was looming. Just know that you will get past this even if it doesn’t feel like it now.
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Re: Relapsing again I think?
Thank you all for your kind words, it is so comforting to know you are not alone... D1Dad, u are right, it does not feel there is any light at end of tunnel
I don’t know what to type, I am just laying in the bed helpless. Thinking maybe I will call in sick and stay in bed, I work out of the home. I don’t feel I have a doctor that is advocating for me. It feels like I am on my own, and I have to find a solution. feels lonely sometimes.. I am just so exhausted, I have a kid in college and two in high school, I have to get better to get them at least through college, I need to stay on earth for at least 7 more years...
I don’t know what to type, I am just laying in the bed helpless. Thinking maybe I will call in sick and stay in bed, I work out of the home. I don’t feel I have a doctor that is advocating for me. It feels like I am on my own, and I have to find a solution. feels lonely sometimes.. I am just so exhausted, I have a kid in college and two in high school, I have to get better to get them at least through college, I need to stay on earth for at least 7 more years...
Last edited by Ali-Mar on Tue Jul 07, 2020 10:58 am, 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
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Re: Relapsing again I think?
Again, I'm so sorry you relapsed. Try to have hope that you will overcome this, stay strong. It sounds like you have a lot of responsibilities, and I know this is very overwhelming and difficult, believe me. But you will get through this and you will have your life back.
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Re: Relapsing again I think?
Sorry you are going through this. It sounds like you may be in CA. There is a great GI in Oakland who I would consider an expert on this , it did take time to get in with him but now with video calls that may be an option. If I had failed the Dificid taper in 2015 he was going to do an FMT. My spouse went through all testing required for donation.
His name is Neil Stollman MD 510 444-3297
I would give him a call and explain your situation.
Take Care
NanciT
His name is Neil Stollman MD 510 444-3297
I would give him a call and explain your situation.
Take Care
NanciT
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Re: Relapsing again I think?
Thank you, Poppy, Nanci, and D1dad.
Nanci, thank you for the Dr recommendation, yes I am in San Diego, CA. I am waiting to hear back from Dr. Copur's office today or tomorrow; she is from UC San Diego to see if she will do the FMT, if not I will call Dr. Stollman he has such great reviews, I have driven from San Diego to San Francisco before, it is a manageable drive, will do it anytime for an FMT. Looks like he is or was at UCSF? that is such a great medical place
Nanci, thank you for the Dr recommendation, yes I am in San Diego, CA. I am waiting to hear back from Dr. Copur's office today or tomorrow; she is from UC San Diego to see if she will do the FMT, if not I will call Dr. Stollman he has such great reviews, I have driven from San Diego to San Francisco before, it is a manageable drive, will do it anytime for an FMT. Looks like he is or was at UCSF? that is such a great medical place
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
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Re: Relapsing again I think?
So sorry to hear you're unwell again, Ali. I know how devastating and discouraging it is to keep relapsing.
As you know, Dificid didn't work for me either, despite being the magic bullet for a lot of people. I am now back on Vanco at my doctor's recommendation.
I hope you find a solution soon. It is definitely a debilitating thing to deal with, especially when you have family and work responsibilities.
Hang in there. You're doing all the right things... doing your research, consulting with doctors... try to stay positive. You will beat this!
As you know, Dificid didn't work for me either, despite being the magic bullet for a lot of people. I am now back on Vanco at my doctor's recommendation.
I hope you find a solution soon. It is definitely a debilitating thing to deal with, especially when you have family and work responsibilities.
Hang in there. You're doing all the right things... doing your research, consulting with doctors... try to stay positive. You will beat this!
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.
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Re: Relapsing again I think?
If you can't get an FMT done in San Diego you should see if you can get one done at UCLA. They have an FMT program and you meet their stated requirement of two failed conventional treatments. https://www.uclahealth.org/gastro/fecal ... transplant
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Re: Relapsing again I think?
Thank you NS789, yes, Sorry the Dificid didn't work for you either, I hope the Vanco taper gets rid of it once and for all
Thank you LHutz. that is great info, thanks so much, I will defiantly sign up for that if the UCSD didn't do the FMT, waiting to hear back from UCSD today or tomorrow
Thank you LHutz. that is great info, thanks so much, I will defiantly sign up for that if the UCSD didn't do the FMT, waiting to hear back from UCSD today or tomorrow
Last edited by Ali-Mar on Tue Jul 07, 2020 5:10 pm, edited 2 times 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
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Re: Relapsing again I think?
A wise person once told me not to expect a different result if I keep doing the same thing.
With that in mind you might want to ask about a Xifaxan chaser after the next round of dificid.
With that in mind you might want to ask about a Xifaxan chaser after the next round of dificid.
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