Imagine not being able to go to the bathroom—and you don’t have a colon.
For 14 years, I had digestive issues, and it was hard to go to the bathroom. My colonoscopy said there was a small line of tear in my stomach, but doctors said it was nothing to worry about. In 2017, I was constantly in the bathroom, nauseous and sick. For a while, things got better.
In January 2018, I couldn’t go to the bathroom again. I got a loop ileostomy that was a temporary fix that March. It’s reversible, but I honestly don’t want it reversed. I love my bag, and I’ve had it ever since.
I remember crying because I couldn’t understand why I was losing weight and in constant pain. Even after getting my bag, I was never diagnosed with IBD (inflammatory bowel disease), IBS (irritable bowel syndrome), or Crohn’s. After years of flare-ups, I was finally diagnosed with Crohn’s in 2022.
“I am a vessel. No matter how much I go through, it could always be worse.”
That September, I was hooked up to an IV machine for 20 hours of the day. It helped me get nutrients, proper food intake, and gain weight. Nurses would also change my port needles (huge needles that sit under your skin). I was still in work meetings, living life hooked up to this machine. From September to January 2023, I slowly went from 20 hours daily to 8 on this machine. Everything was looking good.
In January 2023, I got E. coli, which caused me to be septic. Every time I was hooked up to the machine, my body would go into shock—I was basically running the infection through my bloodstream. I got my port removed and replaced with a PICC line (peripherally inserted central catheter—little line that sits under your skin), but I was back in the hospital 3 weeks later with another infection. I got the PICC line removed, and I haven’t been on an IV machine since.
Today, I’m doing much better. Being an ostomate, that “what if” is always in the back of our minds. “What if I get sick again?” or, “What if this flare-up is bad?” It’s hard when you deal with a chronic or invisible illness, and people don’t know or see what your day-to-day looks like. No days are the same, but I live every day in gratitude and always go back to my “why.”
Mikey’s Advice:
Always advocate for yourself and educate those around you, whether it’s a mental or physical illness. Some days are shitty, but not every day. The best way to get through everything is to try to stay as positive as possible.
