Tuesday, February 19, 2019

Five Things I Wish I’d Known Before My Chronic Illness - The New York Times

Seven Thanksgivings ago, I got sick and I never got better.

What I thought was food poisoning turned out to be Crohn's disease, a form of inflammatory bowel disease (IBD) that doesn't have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole. It's a cruel and often debilitating disease.

Since that first hospital stay, I've had colonoscopies, biopsies, CT scans, X-rays, blood and stool tests, enemas, suppositories, rectal foams, antiemetics, antidiarrheals, antivirals, antibiotics, anti-inflammatories, opiates, steroids, immunoglobulin, biologics and three fecal transplants (if you want to hear a story about my 9-year-old poop donor and a blender, find me on Twitter).

My disease is managed now thanks to an expensive drug called infliximab, but the future is unpredictable. IBD works in patterns of flares and remissions, and little is known about what causes either.

When I was diagnosed, I didn't know how much my life would change. There's no conversation about that foggy space between the common cold and terminal cancer, where illness won't go away but won't kill you, so none of us know what "chronic illness" means until we're thrown into being sick forever.

More ...

https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html?