Relapsing again I think?

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
Locked
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 10:45 pm

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
Top
LHutz
Regular Contributor
Posts: 113
Joined: Wed Dec 12, 2018 7:11 am

Re: Relapsing again I think?

Postby LHutz » Tue Jul 07, 2020 3:55 am

Really sorry to hear that you've relapsed again. Is your doctor willing to do an FMT at this point?
Top
roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapsing again I think?

Postby roy » Tue Jul 07, 2020 7:29 am

Certainly sounds typical relapse.
Top
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Tue Jul 07, 2020 8:47 am

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.
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
Top
roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapsing again I think?

Postby roy » Tue Jul 07, 2020 9:17 am

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.
Top
poppy86
Regular Contributor
Posts: 197
Joined: Sun Mar 29, 2020 10:23 pm

Re: Relapsing again I think?

Postby poppy86 » Tue Jul 07, 2020 9:40 am

I'm really sorry Ali-Mar. I hope you can get the FMT very soon and beat this illness once and for all.
Top
D1dad
Regular Contributor
Posts: 319
Joined: Tue Mar 12, 2019 8:34 pm

Re: Relapsing again I think?

Postby D1dad » Tue Jul 07, 2020 9:45 am

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.
Top
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Tue Jul 07, 2020 10:28 am

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...
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
Top
poppy86
Regular Contributor
Posts: 197
Joined: Sun Mar 29, 2020 10:23 pm

Re: Relapsing again I think?

Postby poppy86 » Tue Jul 07, 2020 10:52 am

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.
Top
NanciT
Long Time Contributor
Posts: 3039
Joined: Thu Sep 18, 2014 12:01 pm

Re: Relapsing again I think?

Postby NanciT » Tue Jul 07, 2020 10:53 am

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
Top
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Tue Jul 07, 2020 11:09 am

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
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
Top
NS789
Regular Contributor
Posts: 119
Joined: Thu Apr 16, 2020 12:14 pm

Re: Relapsing again I think?

Postby NS789 » Tue Jul 07, 2020 12:03 pm

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!
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.
Top
LHutz
Regular Contributor
Posts: 113
Joined: Wed Dec 12, 2018 7:11 am

Re: Relapsing again I think?

Postby LHutz » Tue Jul 07, 2020 2:34 pm

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
Top
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Tue Jul 07, 2020 2:53 pm

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
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
Top
roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapsing again I think?

Postby roy » Tue Jul 07, 2020 4:54 pm

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.
Top
Locked

Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 31 guests