Posted 3/27/2014 10:07 PM (GMT -5)
I didn't have the strength until today to do anything, at all. I finally took some prednisone out of desperation and I feel better. I worry about its immunosuppressive effects, but hopefully with a short round I will at least have the strength to call my doctors for help. I took the chance to get my medical records. What a difference the prednisone made in a single day: from not being able to lift my head to see the TV, to being able to drive on my own. I wonder if this is a sign of severe anemia or cortisol depletion.
From the reports, I found out there is much more going on than what I was told. I posted this on my blog just now. I only picked up lab and radiology reports, and only for the most recent hospital. The other hospital network I went to briefly in the beginning I did not pick up. So let's start off with the good news!
I've had at least 6 CT scans in the last 6 months, each with 200-500 times the amount of radiation in a single x-ray. Great! A radiologist pointed this out to me last time I was there. Next time I go, I need to ask for an ultrasound or MRI.
My worry of leakage from a reanastomosis (surgical site) is apparently a legit theory, as the latest CT scan showed a fluid collection "immediately beneath" it. This was drained in the hospital and had not yet formed into an abscess. It has formed itself into a fistula connecting the terminal ileum (or where the terminal ileum would've been) to the sigmoid colon. The fluid showed Citrobacter freundii.
I now have ovarian cysts on each side. The radiologist suspected this is due to another fistula. That really worries me because I want to have children, and God-willing one day we can.
As for the blood work, it reflected an ongoing infection, but also the last day showed low hemoglobin and hematocrit levels, suggesting anemia. I should've been alerted to this when I left. For those curious, 3/17 showed high WBC, RDW, and neutrophil counts. Low lymphocytes and monocytes. Those were all normal on 3/18, with only low hemoglobin and hematocrit. My lab work across the hospital stays has showed persistently slow blood clotting times. At some point in my stay, I had a slightly high glucose level (only 109, I'm not diabetic), low creatinine, low potassium and high CRP levels. I often have had low creatinine and potassium levels during my stays.
Latest urinalysis showed evidence of a urinary tract infection, as well as hyaline casts. I can't believe they called my specimen yellow, because that was the nastiest, darkest-looking urine I've ever seen. The urine culture, however, showed no bacteria or fungal growth. My bladder wall is "significantly thickened" from cystitis according to the CT report. I've had recurring cystitis or UTI's during my hospital stays.
I'm really surprised by all of this info that I was kept in the dark about. I'm not mad at my doctors, but I should have been informed. I think too often doctors assume the patients don't know much about medicine, but I do. I know everyone here does. If you have a chronic illness, knowing is survival.