I have Crohn's disease. More specifically, severe Crohn's disease.
Crohn's disease is one of a class of autoimmune diseases. The common theme for these diseases (including RA, Lupus, Colitis, MS, Psoriasis, etc.) is your body's immune system decides it's more fun attacking your own body than it is to attack outside infections.
Currently, there are no cures for Crohns or Colitis (a very closely related Inflammatory Bowel Disease). There is no diet, no lifestyle change, and no pill that can make those suffering from a Crohn's disease flare-up heal permanently.
There are a lot of drugs that can help. I should know, I've been on literally every one of them.
But for many people with IBD, the drugs stop helping (or never help in the first place), and your immune system goes thermonuclear on your guts. This happened to me last year.
I started the year learning I had CMV Colitis, and got my first-ever PICC line (not an experience I'd like to have again, though...). Through the first half of 2018, I had more colonoscopies than many have in their entire life, to confirm my digestive system had, in fact, gone thermonuclear. I had the 'full' workup, a.k.a. a proctocolectomy, where every last bit of GI tract was removed from the end of my small intestine to my butt! (In IBD lingo, this results in a condition called 'Barbie Butt'—or I guess in my case, 'Ken Butt' ?
This surgery saved my life—I went from spending hours a day in the bathroom, having no energy to do common tasks, and spending little time with my family, to living a normal, active life.
Nobody faced with the decision to turn around their life should be held back by a stigma fueled by a misunderstanding of ostomies. In popular culture, ostomies are often portrayed as something to be ashamed of or embarrassed by; for example in a Silicon Valley episode (S2, E6), a man was nicknamed 'Double A' for having 'two a-holes', a source of shame that caused a rift between him and his friends. This and other examples linking ostomies to shame or mistreatment are not infrequent in pop culture and advertising.
Did you know Pope John Paul II had an ostomy? In 1981, he was shot, and the bullet perforated his intestines. Without his temporary colostomy, he would've been dead at 61, robbed of 24 years of life.
Nobody should feel shame for having an ostomy—especially children, who encounter enough social pressures without having to worry about a medically-necessary modification to their bodies to help them with an illness or birth defect.
Today, October 5, is Ostomy Awareness Day, a day all of us 'ostomates' can celebrate our ability to live a full life again, enabled by our ostomy surgery.
Life is never easy for an ostomate, and ostomies are not without complications. But without this life-saving surgery, thousands of people would die every year.
I've had an ileostomy for over a year now. I am back to being an active father and husband. I still have complications from Crohn's disease (who knew it can attack your mouth!?), and I'll still deal with that for the rest of my life. But I have not second guessed my decision to get a permanent ileostomy and am proud to call myself an ostomate.
