Still Fighting the Beast

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sammi79
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Posts: 74
Joined: Wed Mar 30, 2016 11:02 am

Still Fighting the Beast

Postby sammi79 » Sat Jul 18, 2020 10:00 am

I don’t even know where to start, I feel so defeated. After I finished my taper at the end of March, things never got 100% better. But I had a negative CDiff test near the end of my taper so the doctor said to give it time. Then mid-April the doctor did another round of Vanco with taper because things got way worse. Because of the lockdowns, he could get me in so he called in Vanco immediately. Within a week, I was 50% better. I had a colonoscopy at the end of May which he said showed moderate ulcerative colitis combined with the bloodwork. He did not take samples and test for CDiff while he was up in there. I should mention before the colonoscopy I was tested for CDiff again andnit was negative. I was on the taper.

I was put on a medication called Balsalazide to help with the ulcerative colitis. It helped firm stools up a bit and things almost went back to normal. Then, about 3 weeks after the Vanco was finished, all hell broke loose again. I thought to myself “You’ve had 2 negative C Diff tests AND still treated with Vanco, it’s the ulcerative colitis and you will just have to learn to live with it.” I couldn’t accept that because of how worse things were getting despite being on the Balsalazide. B & M like I have never seen before. I was scared!!!! I had to give a sample to the lab for an inflammation test on Thursday so I called my doctor and asked him to humor me and do one more C Diff test. He sighed and said he would add the order. I asked him to test for BOTH toxins not just one. Lo and behold, I got a call yesterday that the test was positive for C Diff!!!!! I freakin’ knew it. The 2 other times I was tested, I was still on the Vanco so I did not think they were accurate.

Anyway, my doctor started vacation yesterday so his Nure Practioner called me with the news and said she is done messing with Vanco and is calling in Dificid. My insurance will pay for it, just waiting for them to approve the authorization that was sent to them 20 min before closing so I’m sure it won’t come through until Monday. Then a specialty pharmacy has to fill it because mine doesn’t deal with Dificid because it is a “specialty” medication. So, I may not be able to start it until Wednesday at the soonest.

I have about a full 14 day supply of Vanco left. He always over ordered more than he needed for the taper. The Vanco does give me relief just not kill the CDiff off. Would I jeopardize the upcoming Dificid treatment if I started the Vanco to calm my movements down???? I don’t want to send the sucker into spore form prematurely and have the Dificid be a waste.

Also, I was elated that I still have C Diff. I see a light at the end of the tunnel that I can eventually get rid of this by having the correct diagnosis. Facing a lifetime of UC was depressing and making me super anxious in a time when the pandemic is making my anxiety max out. My daughter thought I was nuts when I got off the phone and happily said “I really do still have C Diff. I’m not nuts!!!!”

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

Re: Still Fighting the Beast

Postby roy » Sat Jul 18, 2020 11:41 am

Dificid is superior because it does not kill off the good flora.
If you take vanco first it will eliminate the advantages of taking dificid.
BUT if your in urgent need of treatment you might not be wise to wait.
Try and get a Drs advice.

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

Re: Still Fighting the Beast

Postby Ali-Mar » Sat Jul 18, 2020 11:11 pm

I am not an expert but there is the following small study of using Dificid as a chaser after the Vanco, it is best to call the on call GI or ID doctor and see what they think of this study and method

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/
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
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Still Fighting the Beast

Postby beth22 » Sun Jul 19, 2020 1:14 am

I would call your insurance or pharmacy on Monday and ask them to expedite the order. This is, after all, an infection. You can't wait forever.

sammi79
Contributor
Posts: 74
Joined: Wed Mar 30, 2016 11:02 am

Re: Still Fighting the Beast

Postby sammi79 » Sun Jul 19, 2020 8:47 am

I am going to wait for the Dificid. My symptoms seemed to have calmed down a little so it’s almost bearable.

I will be calling the insurance 1st thing Monday morning. Unfortunately, this all happened Friday afternoon so by the time I got done with my pharmacy and then the specialty pharmacy, the insurance was closed. But, I do know the specialty pharmacy sent the request with an urgent memo.

The biggest thing I’ve learned in all of this is to trust myself. I questioned the timing of my last 2 tests. I never felt like the Vanco kicked the C Diff as I was never 100%. I wish I would have pushed harder with my doctor sooner.

I am so tired, physically and mentally. There are days I hurt so much and have so much blood I can barely get off the couch. I literally cried at dinner 2 weeks ago and apologized to my family for being a slug. Thank goodness I haven’t had to work or shuttle my 2 kids around to sports and activities these past few months. My husband and I have zero intimacy because I hurt. Most of the time I am so bloated I look 9 months pregnant. This has been going on for almost a year. Okay, July-December was sooo mild I thought I was having a bad IBS flare. But when it took a dramatic turn at Christmas I knew something was wrong. And it just hasn’t gotten better since.


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