It's October - and I tested negative for C. Diff!!!

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
Rev1119
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It's October - and I tested negative for C. Diff!!!

Postby Rev1119 » Mon Oct 18, 2021 12:11 pm

Hi all - I am posting because this is the first October since 2018 that I am negative for C. Diff - definitely a success in my book! Here is my story -

In October of 2019, I was having worsening GI symptoms that I chalked up to my IBS-D (which I've had much of my life) getting more severe with age. I was incredibly shocked when my regular GI doctor called me early one morning to say that I actually had C. Diff which needed to be treated. As for how I initially contracted the infection, I'm not exactly sure - I had not been on antibiotics for quite some time and I was not recently in a hospital. Doctors suspect it might have been from working at my job in a community mental health center. I took a 14-day course of Vancomycin which caused nasty side effects, and I ended up in a local hospital for several days. It was the worst week of my life. After being released from the hospital, I never really felt like myself.

As the months progressed, my GI symptoms worsened again and I suddenly developed upper GI symptoms as well after having too many acidic foods/beverages/supplements all at once. A different GI doctor (who I only saw because I could not get in to see my regular doctor) insisted on prescribing me a low dose/short course of omeprazole. I protested but she said I needed to take it - I did and the C. Diff symptoms returned with a vengeance in mid-October of 2020. My regular GI doctor ordered another C. Diff test for me, and later called to tell me I had tested positive for C. Diff (again, in October!) a second time. He put me on a 10-day course of Dificid. I tolerated the Dificid significantly better than the Vancomycin and felt noticeably better with renewed energy afterwards.

While recovery has been slow and often not easy, it's been a blessing to say that it finally feels like I'm recovering. I dealt with lower GI flares for the first month or two post-Dificid and ate very, very blandly. Dificid slowed down my gut drastically and while I've no longer had severe IBS-D (also a blessing!), I've developed IBS-M and get reflux every few months when I eat a trigger or overeat too close to bedtime (which is well-controlled through dietary changes and sleeping on an incline - NEVER with PPIs or H2 blockers). My post-infectious IBS flares have continued on and off for a few months, and in August of this year, I had one particularly horrific flare with C. Diff-like symptoms. My GI doctor tested me for C. Diff via PCR, and much to my surprise he called me to say that I'd tested negative, that it was just a particularly bad flare.

Since testing negative for C. Diff in late August, I've continued to feel better as time passes/have had no flares since, and have been thrilled to be able to tolerate lactose- free yogurt daily and get daily exercise in. C. Diff has cost me a lot over the past two years, but I am grateful to say that I am recovering, and that it is October once again and I've recently tested negative. I'm also grateful for all of the support I've received from this group, and am hoping that this post brings hope to others who may need it. Be well and stay safe!!!

Msteff
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Re: It's October - and I tested negative for C. Diff!!!

Postby Msteff » Mon Oct 18, 2021 1:44 pm

What is c-diff via PCR. A test?

Rev1119
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Re: It's October - and I tested negative for C. Diff!!!

Postby Rev1119 » Mon Oct 18, 2021 2:18 pm

Msteff - the PCR is a molecular test for C. Diff. (From https://www.cdc.gov/cdiff/clinicians/faq.html): FDA-approved PCR assays, which test for the genes encoding toxin, are same-day tests that are highly sensitive and specific for the presence of a toxin-producing C. diff organism.

Msteff
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Re: It's October - and I tested negative for C. Diff!!!

Postby Msteff » Mon Oct 18, 2021 4:25 pm

Are these tests that are done in a doctors office? I am not medically astute and I have had to go to the ER for stool testing. In the time of Covid this is dangerous and lengthy. I am sure they don’t want me there.

Rev1119
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Joined: Sat Nov 16, 2019 9:39 pm

Re: It's October - and I tested negative for C. Diff!!!

Postby Rev1119 » Mon Oct 18, 2021 5:17 pm

Every time I've been tested I've had it done through my GI doctor's office; I've either gotten the testing materials at an actual appointment or (when I was symptomatic and called the office for a test) they had me pick them up at their office. Then I just needed to go to my local LabCorp to drop off the test - fairly easy process.

roy
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Re: It's October - and I tested negative for C. Diff!!!

Postby roy » Mon Oct 18, 2021 5:18 pm

ER is probably quicker but any Dr can arrange a test.
ER would get same or next day results.
If you have full on c.diff symptoms your Dr's advice to go to ER is probably correct.
Reminder.
Flagyl is not recomended as a c.diff treatment.
Dont let ER prescribe it.

Rev1119
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Posts: 61
Joined: Sat Nov 16, 2019 9:39 pm

Re: It's October - and I tested negative for C. Diff!!!

Postby Rev1119 » Wed Nov 02, 2022 2:26 pm

Yesterday marks 2 years since I had my last Dificid pill for my 2nd bout of C. Diff. I've gained back 10 of the 20 pounds I lost, and am feeling better overall, with more energy than I had when I wrote this post. The things that I feel were most instrumental in my recovery process were: 1) time and 2) my amazing dietician who gave me several helpful hints (I know that everyone's different, but am happy to share for those who want to know). To those who are new to C. Diff and recovery, I've been there - have faith, stay strong, and know that things can get much better with time.


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