First time in a long time

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

First time in a long time

Postby ashtontw » Tue Feb 28, 2023 11:01 pm

Hi everyone

Never thought I would be back here. I had an 8 month long fight with C Diff six years ago. I was cured by an FMT after many relapses on Vanco and negligent doctors.

For the first time in forever, I’m scared.

I recently found out that I am extremely iron deficient and anemic. I’ve started having iron infusions and after my third one, my stomach has been ripped to shreds.

I started with cramping and D the Saturday before last and I passed out at work. High heart rate and chest pain as well. I went to the ER and the doctor decided not to do a stool panel as they gave me fluids and checked my heart and got me feeling better. I did bring up my C Diff history but I have not been on any antibiotics so they weren’t overly concerned. He suggested to start probiotics so I did, Garden of Life critical care. I stopped after a few days because I felt awful.

The D continued all this last week and on Sunday got worse with lower back/flank pain. The lower back pain was a big thing for me during my initial C Diff fight. So, I panicked and went back for the GI panel and C Diff test. Everything came back negative for toxins A/B. They did a CT scan and didn’t find anything. I can't help but to still worry, as years ago I remember getting false negative tests, too. How sensitive are the two hour ER tests?

Yesterday was a little better but today has been terrible. I’m struggling even with bland foods. I’m not super crampy, but everything I eat is going right through me and I am super gurgly. I toughed it out at work tonight and now I feel like I might have a fever. At this point I’m hoping I have a bug or a touch of the flu so that I can stop obsessing that the monster might be back.

I am seeing the PA at my primary’s office tomorrow. I plan to ask for a script for a PCR for a confirmation that I am in fact negative. I’ve gone down the Google rabbit hole and unfortunately read that iron infusions and iron can feed C Diff. Im back on anxiety medicine after this whole week because I am so insanely scared. The monster almost killed me the first time and I don’t know that I have the strength to face it again.

I guess I’m just looking for some reassurance or advice. I feel really alone and scared right now.

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

Re: First time in a long time

Postby NanciT » Wed Mar 01, 2023 12:19 am

Sorry you are going through this, that terrible fear that can stay with us. I had two iron infusions the year after I had CDIFF, I recall feeling really sick and having some GI symptoms but no CDIFF. I think that would be really rare. I understand the fear.

Your tests sound accurate and negative. It's tough to reassure when you have been through a terrible experience.

I generally go "bland" when the GI acts up...for me it still does. I originally had CDIFF for a year in 2014-2015 and a Dificid taper finally got rid of it, I was very very sick from it with several ER visits etc.

I did get it again in 2020 after a kidney infection and I was admitted into the hospital on IV antibiotics. I was home in two days with D started and I could not leave the bathroom. I mention this because it was very severe. Thankfully I have an ID now who quickly started me on a Dificid taper and I worked through it. I didnt feel well and it took time to heal but I knew what to do this time.

it was very clear and no question when I got it in 2020 and I had no choice at the time for antibiotics. in all the years I have been on this site, I have never heard of anyone getting it from an Iron infusion.

Hang in there and hopefully your symptoms will clear up soon

NanciT

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

Re: First time in a long time

Postby ashtontw » Wed Mar 01, 2023 8:58 am

Hey NanciT!

Thank you so much for replying. I actually remember you on here from six years ago, thank you for being here. I feel guilty for not staying on to comfort others after I beat it. I ended up in therapy and I was advised to not dwell on here because it had become so obsessive for me. I’m so sorry you’ve had to fight the monster again. It’s just not fair for anyone that has to go through it. Especially multiple times. I never thought I would have to face it again after the FMT, I thought that reset my body and gave me a fresh start.

I’ve had a lot of flare ups over the last few years but I’ve always just taken pepto and moved on. Nothing has lasted this long or felt this close. Last Sunday I even had myself convinced of the smell. The ER doctor told me to stop taking pepto until I see my primary (today) just incase. I’m also having surgery in less than a week and was told by pre anesthesia that I can’t have any vitamins, supplements or pepto for the rest of the week. So that has been hard when normally I would be popping pepto like candy.

I guess I’m also afraid because I’ve been in and out of the infusion center and around sick people and in and out of the ER a few times over the last couple of months. I know it can still be community acquired and there are new and worse strains out there now. I went to the hospital by ambulance when I passed out at work. I overheard them paging in another ambulance to the hospital with a suspected C Diff patient - I wish I could have seen a picture of my face when I overheard that.

I’m praying my primary will oblige me for another test for confirmation today. I think it will ease my mind since I know I’ve had false negatives from the ER before. This has been two weeks of literal hell. I stopped the probiotic about a week ago now. Could it still be taking this long to settle down my stomach if that was the cause? I have taken that brand before but it’s been awhile and it was a very strong one.

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: First time in a long time

Postby GtrGrl » Wed Mar 01, 2023 6:08 pm

Hello, I just wanted to show some support. Our stories are quite similar (6 months then an FMT) and I completely understand the fear too. I've been ill for months with a different, unidentified infection (so they can't treat it, due to C Diff risk; I'm in a hellhole) and initially I was panicking that It was back, bc of the symptoms. But it wasn't. I also had an iron infusion a few months ago, I didn't know it is a risk factor or I wouldn't have had it! But it has not caused a relapse. If I were you I would also be trying to get one more test, though, and perhaps getting on the S Boulardii. If you are in the States, someone else was talking about Enteragam, a toxin binder, and how much it helped them; if you can get it prescribed it might worth trying?


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