First time diagnosed with CDIFF; scared of dying

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.
John316
Brand New Poster
Posts: 2
Joined: Tue Aug 03, 2021 11:49 am

First time diagnosed with CDIFF; scared of dying

Postby John316 » Tue Aug 03, 2021 1:01 pm

Hello,

I am a female who was diagnosed with Cdiff recently for the first time a few days before my 30th birthday. It all started when I got a puppy from a non-profit and I was kissing it and playing with it constantly and that very evening I started having upper right abdominal pain and my lips were dry, itchy, and flaky. I didn't think much of it and starting having headache. Also the puppy’s nose had touched my mouth later on. Two days later I ended up returning the puppy because it was causing me health issues and on the drive back home, I started having severe pain in my stomach and nausea and weakness and whole body was tingling. My dad had to stop the car so I could rest in the parking lot and I ended up going into a store's bathroom and had some diarrhea but I could barely even walk there and back to the car. That evening I had more diarrhea and severe nausea and went to sleep hoping it would be better in the morning. The next evening I ended up going to the ER because the pain was unbearable. The pain had spread from my upper right abdomen to my upper left abdomen and there were rashes. They did CT scan, urine sample, and bloodwork which came back normal except I had ketones in my urine due to not being able to eat anything, mostly drinking liquids. They said it’s most likely viral infection based on the bloodwork so antibiotics won’t help but I was still in tremendous pain.

Some additional context is In 2016 I had a colonoscopy for rectal bleeding and at the time the gastroenterologist had removed a polyp and given me CIPRO antibiotic via IV. I also had a dental crown/root canal done in 2019 which I am not sure if the dentist administered antibiotics for me then. I have had chronic pain in my upper left abdomen since my colonoscopy in 2016 which I suspect may be IBS or UC but never officially diagnosed. I think this may be why I got such a serious infection from the puppy when my husband didn’t as he hasn’t had antibiotics since he was a kid. The worst pain for me right now is in my upper left abdomen where I have had chronic pain since the colonoscopy in 2016. The day after I went to the ER I went to urgent care because I noticed the pain was spreading from my abdomen to my legs, shoulder, back, sides, etc. and there were red rashes forming where the pain was and I was concerned I could be septic/organ failure. It also feels like the infection could be spreading to my brain but I hope I'm being paranoid. The doctor ordered stool sample for me which I wasn’t able to go until two days later because I was constipated and I dropped it off that morning. That evening it came back positive for CDIFF and the urgent care doctor prescribed vancomycin but after doing research online I requested dificid which I started taking that night. The following morning I went to a different ER because the pain was still really bad and I was still concerned about the rashes – they did ultrasound, bloodwork, urine sample which showed a drop in WBC to 3.2 but other than that results were normal. I do have a history of low WBC. Yesterday I did more bloodwork and my WBC dropped to 2.6. Today is day 5 of taking dificid and it’s hard to tell if I’m getting better or not. Also I keep reading that diarrhea is the main symptom of CDIFF but I have been constipated which I'm not sure why. And it scares me that it seems like a lot of (most?) people who have gotten CDIFF weren't cured the first time.

My upper left abdominal pain is still really bad but I’m not sure if it’s because of the CDIFF did permanent damage or it has to do with IBS or UC from the colonoscopy I had in 2016. In addition, my lips are still dry, flaky, and swollen so I was concerned there was a staph infection especially because I started getting yellow discharge on my eyes. I’ve done a bunch of tests ordered by different doctors and am still waiting on 1 other stool sample to come back, blood culture, lip swab to see what the infection is but I’m anxious the longer I wait to treat the worse it will get. I am applying Vaseline on my lips in the meantime. The past 2 weeks have been a living nightmare and I regret getting the puppy everyday. I’ve told my husband I feel like I’m dying everyday and I just feel so hopeless. Also it doesn’t help that I’ve been in several major car accidents and still suffering from post concussion syndrome. This diagnosis has been devastating for me – I don’t even know if I will be able to attend my upcoming wedding in October. I’ve never been this sick in my life and it’s hard to see the light at the end of the tunnel. I would appreciate if you can share your thoughts on my symptoms and what you think the cause may be such as the pain spreading/rashes - I am trying to get an appointment with gastroenterologist and/or infectious diseases but it takes time for them to review the referral/medical history and they are swamped right now. I’ve also read that probiotics may help so I started taking Culturelle last night. Thank you so much.

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

Re: First time diagnosed with CDIFF; scared of dying

Postby GtrGrl » Tue Aug 03, 2021 1:40 pm

I’m sorry you’re having such an awful time and your fears are understandable even if not likely to come true. I don’t feel I can helpfully comment on a lot of what you have described but I do know Vaseline can actually make dry, flaky lips worse. Blistex salve is good - but maybe you shouldn’t put anything else on them until you know what the cause is. Blephaclean wipes are soothing to the eyes and good for cleaning lids but again, you really need to know what you’re dealing with.

Dificid is generally considered the best antibiotic for C Diff so you did right to request that.

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

Re: First time diagnosed with CDIFF; scared of dying

Postby roy » Tue Aug 03, 2021 3:53 pm

To diagnose C. Diff a Dr has to match your symptoms to the test result.
Your symptoms are not c. diff symptoms.
C. Diff can be part of your normal gut flora.
Regardless of that test result its extreamly unlikely you have the disease called c. diff colitis.

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

Re: First time diagnosed with CDIFF; scared of dying

Postby beth22 » Tue Aug 03, 2021 7:31 pm

I agree with Roy. C diff does not normally cause a lot of your symptoms like rashes, etc. It is unlikely that the puppy got you sick if you started to feel sick just hours later. For the puppy to give you an infection, it would take at least a day I think. Did the ER doctor think the puppy was to blame? Also, have you been tested for Covid? I assume in the ER they tested, but if not, you might think about that. C diff also does not generally cause a low WBC, but I had a very low WBC when I got the flu in 2016 and was told that a viral infection can do that. If you don't feel better, maybe see an internal medicine doctor or an Infectious Disease specialist.


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 23 guests