My near-death experience

Warning: graphic details! 

Within 8 months of my daughter being born in 2011, I started having some horrible and embarrassing symptoms including pain, bleeding and incontinence. At first, my health care team chalked these up to a  hemorrhoid due to vaginal birth. After symptoms increased dramatically in severity, we realized it wasn't that. Tests were done, and I was referred to a gastroenterologist and had my first of MANY colonoscopies. What was found was a severely inflamed and bleeding colon, and I was provided with a diagnosis: Ulcerative Colitis (UC), a form of Inflammatory Bowel Disease (IBD).

*Sidebar - 

1) IBS and IBD are very different. IBS stands for Irritable Bowel Syndrome and while it it also unpleasant and affects quality of life, it is not life threatening.

2) Please do not ever mention a colonic cleanse in my presence - we will never ever see eye to eye on this. Just don't. :)

Fast forward two years, to the Fall of 2013, after many failed medications, biologic injections, and treatments (including a research study in fecal transplantation), 8 more colonoscopies, and about 100 lbs of rapid weight loss due to the fact that my system was failing. By December, after being admitted to hospital for almost two months and being fed by intravenous TPN (total parenteral nutrition), my physicians levelled with me: have surgery to remove my colon, or reach a point of no return. I was dying. 

To say this now seems melodramatic to me - it didn't feel this serious when I was in it... but I see now that was my coping mechanism. Keeping a cheery disposition helped me ignore how bad it was in the moment. In fact, in all photos from this time, I am smiling.

But I recall the grave faces of the physicians when they came to my bedside. A new physician was brought in for a third opinion - he sat by my bedside and his exact words are etched in my brain "If you were my sister, I would have told you to have this surgery 6 months ago. Without it, you will not see your daughter grow up." 

Needless to say, I had that surgery before the holidays that year, and then lived with an ostomy for a year and a half longer, having two additional abdominal surgeries to create my new and improved GI tract (a process where a specialized surgeon takes your small intestine and creates a "J pouch" internally to act as a pseudo-colon, and reroutes to your rectum so you can function "normally"). And now, after many years of learning how to live with my new insides, and a few setbacks (including another autoimmune disease), here I am today. Still alive. 

Alive, and living through a pandemic, gaining weight from stress-eating and imbibing a little too much, virtual schooling my 9 year old and seeing others who aren't so lucky, as they die from COVID-19. 

I am grateful. And this is why I also care so much about death and death education. If you read yesterday's post you'll recognize this quote - it feels very relevant for me again today: "...it's actually in facing the darkest realities of life that we find light in them."

I'll do my best to LIVE today, and every day, until my time really is up. 

May 19 is World IBD Day. Wishing all fellow IBD warriors a very good day.