It’s weird to write this at last. I’ve told this story to so many people, in so many edited and abbreviated forms that I felt like I’d told you all what Crohns did to me.
Here’s the short version, and I plan on writing about some of the things in more detail: last year I had a mystery discharge and after 4 months of constant doctors visits and lack of detection on what it might be, I went to the ER just before Halloween, to get a CT scan with contrast before having surgery for what we thought was a hernia.
The CT scan revealed that my Crohns had been running rampant and my small intestine had perforated my uterus and my bladder and the hernia was actually a giant abscess.
So the Local Hospital sent me to Keck Hospital of USC and they promptly started me on a course of drugs to help try to calm the situation so that they could operate.
On Halloween, I underwent my first surgery to drain the abscess and put in an ileostomy – where part of my intestine would poke through my abdomen and empty out into a bag. Giving the rest of my intestine time to heal.
The surgery was a success, I was sent home to recover. I weighed 76 lbs. At the start of 2018 I weighed 98 lbs – which is what I call my skinny healthy weight. Where I’m in okay shape, but not a bunch of muscle tone. Yes, I’d lost a quarter of my body weight.
I saw a lot of specialists, and we planned for the future surgery. Which would reverse the ileostomy and remove the most damaged portion of my intestine.
In mid January, I had a blockage in my intestine. It hurt, I was sick and I went to the hospital. We cleared it (turns out my abs were doing TOO good of a job healing) and I came home. And a day later it happened again and I had to go back.
We couldn’t wait any longer. I went in for the longer, more involved surgery. They removed 125 cm of my small intestine. I now have a 7″ incision scar that runs from above my belly button down to the top of my pubic hair.
I had to start recovering again. I’m on a new medicine, picked up a lot more specialists, and then I found myself trying to regain… myself.
Thanks to my nutritionist, the weight’s come back on. I lost a lot of hair (normal shedding, and indeed, I have new growth in its place) And 8 weeks ago I was cleared to start going to the gym, where my husband has me on a strength heavy routine.
It’s time to start over, people.