One day fine then a changed world
Last November I was preparing for the holidays. I am a retail store manager. I had been having the runs for a few months but I had no real pain, just annoyance.
Then it changed.
Horrible pain sent me to the ER
I was at work and I bent over to stretch my lower back. I started feeling agonizing abdominal pain that was so bad I went home from work. 24 hours later I was in the ER. The ER took a while but the CT scan they did gave them concern for my appendix. Yay! Appendix! It was Nov 14, 2019. I'd be back to work for Black Friday!
The pain was unlike anything, ever. I felt like I was being cored like an apple. The ER set me up to remove my appendix. They removed my appendix and sent me up to ICU. Turns out, I had a malignant cancerous neoplasm on the appendix and they got it all out. A few days later they sent me home.
My pain did not improve
I passed out in the bathroom at home due to low potassium. My kids called 911 and back to the hospital I went. Since I just had my appendix removed they refused to do a colonoscopy for four weeks due to healing. At this point I was having the pain and the runs at least 15 times per day. Blood in the stool lowered my iron and during the length of this process I ended up with roughly ten blood transfusions.
To speed up my tale a bit, I spent 2019 holidays in the ICU. In early January I ended up somehow with MRSA in my PICC line and got transferred to a hospital better equipped for MRSA. Move forward to mid January and the MRSA was gone. My colonoscopy showed that my colon was lit up with inflammation and they decided to try preventative measures with antibiotics etc. My calprotectin was greater than 500. On Jan 29, when my night nurse came to check my blood sugar, I remember her screaming and running out of my room. I was barely conscious. I would soon find out my sugar was 30. I was dying.
My three options
Due to the aggression of the on duty nurse practioner I was in an ambulance headed back to the main hospital. I remember very little except for my doctor at the end of my bed- “Jessica, can you hear me?” I nod. “we have three options. 1. we do nothing and you die. 2. I go in and take out the problem in your colon or 3. I go in and take it all out”. I remember holding up two fingers for option #2 and then I lost consciousness.
My surgery took over 3 hours and I woke up in agony from the surgery. I had a twelve inch incision from my sternum down. I also now had no colon and was the proud owner of a stoma and an ileostomy. I was angry but I wasn’t dead. I was alive.
Getting used to a new way of life
All in all I was in the hospital for five months. I was out of work for 8 months. Today I have completed my first week back in my store. My eyesight is bloody terrible in fluorescent lighting and I had to relearn how to walk and even sign my name without my hand shaking. My hair fell out so now it's short and completely gray instead of long reddish brown.
I'm trying to get use to my new life. I started Stelara for my wretched arthritis and got my medical marijuana card- THC edibles have saved me at night since I'm only suppose to take ibuprofen sparingly, if ever.
Would not wish this change in trajectory on anyone but someday I'm sure it will make more sense.
What is your comfort level disclosing your IBD to your employer?