Still not well

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ashtontw
Regular Contributor
Posts: 193
Joined: Wed Jun 22, 2016 10:04 am

Still not well

Postby ashtontw » Thu Mar 02, 2023 10:38 pm

The worries continue.

Back story - 8 month long fight with C Diff 6 years ago, finally cured by an FMT. First time since then having a flare long enough and similar enough to scare me. I recently have had iron infusions. Used metrogel for BV but no oral antibiotics at all for six years. Was seen in the ER a couple times recently for iron infusion side effects (chest pain, passed out at work).

I was seen in the ER Sunday for c Diff symptoms lasting two weeks now. I did a stool test by FilmArray PCR which is apparently supposed to be very reliable. The problem - I had a hard time producing a sample and when I did, I got a little urine in it from straining. The test came back negative for everything including C Diff. I can’t help but worry that the urine made it a false negative. I didn’t think anytbing of it at the time. Now looking it up, apparently it can contaminate and dilute.

I have not gotten any better. I saw my PCP yesterday who obliged me for another test. Sent that off today to the lab - GDH PCR with EIA. I guess the GDH is pretty accurate but the EIA not so much? (I’ve been back on here doing a ton of reading through posts). She sent me an urgent referral to GI, who I will be seeing tomorrow afternoon. It took me four GI doctors previously to find one who cared and sent me for the FMT after 8 months. Unfortunately, he retired. Hopefully the doctor that I’m seeing tomorrow is good.

Anyone have any insight on a little urine in a stool sample? I can’t get out of my head that I caused a false negative. I would think the urine wouldn’t affect C Diff toxins.

I’m really struggling. I’ve started on Ativan to try to control my mind but it’s not doing much.

:(

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Still not well

Postby beth22 » Fri Mar 03, 2023 2:08 am

As far as I know, the PCR looks for the DNA and that wouldn't be affected by urine. I would ask the doctor to be sure or even call the lab and ask.

ashtontw
Regular Contributor
Posts: 193
Joined: Wed Jun 22, 2016 10:04 am

Re: Still not well

Postby ashtontw » Fri Mar 03, 2023 10:59 am

Thanks Beth.

It’s taking everything in me not to give into my anxiety and go back for another rapid test at the hospital. I’m just afraid to pick it up there if this isn’t really it. If I’m not better tomorrow, I will probably go.

I’m going to try to stick it out and see what the GI says today. I never realized how bad my PTSD was from this until I got a flare that feels close enough. I’m so convinced that this is it. I’m so scared.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Still not well

Postby NanciT » Fri Mar 03, 2023 11:30 am

I agree with Beth, I don't think the urine would affect the actual test. If the next test is negative, a GI eval is the best option.

Hope you feel better soon

NanciT

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Still not well

Postby NanciT » Mon Mar 06, 2023 9:48 am

How did the GI visit go? Any improvement?

Keep us updated



NanciT

ashtontw
Regular Contributor
Posts: 193
Joined: Wed Jun 22, 2016 10:04 am

Re: Still not well

Postby ashtontw » Mon Mar 06, 2023 6:28 pm

NanciT,

Thanks for thinking of me! The appointment wasn’t “great.” I saw the P.A. who was very flat. She didn’t feel I had c Diff. And the test from Quest was negative (GDH test). I was concerned about my ER test being a false negative because I got a little bit of urine in it. The P.A. feels confident in both of them.

I am going for an upper endoscopy and colonoscopy tomorrow morning. I am scared out of my mind to do the prep and damage my gut flora. But my symptoms have gotten so much worse, it has to be done. I still have the D and now severe nausea and this raw gut wrenching feeling in my stomach. I think I might actually have an ulcer. They called in zofran for me today and it helped a little bit, it’s more manageable. I’m about to start the prep in an hour, wish me luck. :(

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Still not well

Postby beth22 » Wed Mar 08, 2023 1:58 am

Good luck! Let us know how it goes.


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