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My journey

barbara456's avatar image

By barbara456

2 min read

Hi everyone I’m 23-years-old, originally got C. diff out of nowhere. I was not on antibiotics or in a hospital when I had caught it, but the first problems started with very heavy and irregular periods and then I started having some abdominal pain and some constipation.

IBD-like symptoms become worse

Then diarrhea started and slowly progressed, but at first, was stable with diarrhea for a few days at a time which they thought was IBS until I had gotten very sick one day.

A CT scan showed massive colits, at first it was not known from what. Then I had a stool sample done and was positive for C. diff and a Crohn's disease marker for calprotectin (which was 456).

So overall I’ve had 3 C. diff relapses, 8 UTIs, and, a kidney infection (2nd relapse).

I had a CT scan that showed colitis, 2 colonoscopies, and a pill cam for just the small intestine.

The first colonoscopy showed hemorrhoids and the second showed inflammation in the rectum, but only one biopsy of the rectum was taken. The upper GI endoscopy showed gastritis and esophagitis.

I also just recently had surgery with a cystoscope for hydrodistention. A biopsy of the bladder showed chronic inflammation and I was told it was interstitial cystitis.

Lymph nodes emerge

I just had an IUD put in another recent CT scan which showed enlarged lymph nodes in multiple areas. A nodule in the lung, which was thought to be lymphoma. More lymph nodes have popped up that I can see. One on the neck, another on the groin, and a lump on my chest - which I am not sure is a lymph node or not.

I am now in the process of being tested for things that can cause immune system problems and enlarged lymph nodes. I have just gotten a lymph node biopsy which showed a reactive lymph node.

Blood tests results vary

My blood work does have some abnormalities in some levels that were normal but are now mostly consistently abnormal. Also, I have some fluctuating levels that are sometimes normal and sometimes abnormal BUT have been abnormal multiple times - and then some recent newly abnormal levels.

Sometimes abnormal blood work

    High white blood cells low lymphocytes
    High Neutrophils
    Elevated anion gap
    Low total carbon dioxide
    High MCH
    High chloride
    High monocytes
    High testosterone

One-time abnormal labs

    Low ferritin
    High ALT
    High CRP
    High AG ratio
    High Amylase
    High platelets

Recently abnormal blood work

    Evelated monocytes
    High chloride
    High AG ratio
    High CH50 level

Levels usually consistently abnormal

    Elevated alkaline phosphate
    Low vitamin D
    Low iron saturation
    High calprotectin
    High cortisol
    Low estrogen
    Low progesterone
    Dropping b12
    Iron folate levels

So please if anyone has any advice and or ideas/opinions of what diagnosis this could possibly be, I would really appreciate the help.

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