Shaun's Story

October 7, 2017 is Ostomy Awareness Day, which is three days after National Taco Day, one of my other favorite “national days.”

Ostomy Awareness Day got me thinking about, quite simply, how many people I’ve known throughout my life who didn’t realize that I have an ostomy. The list of people is probably longer than it should be. At times, even some of my friends (and flings) were unaware of my ostomy and the fact that:

  • I was diagnosed with Crohn’s disease at age 4, a diagnosis which was later changed to indeterminate colitis.
  • By the age of nine, my mom (who was a total rock star throughout the entire process I love you, mom) and doctors at Children’s Hospital in Boston decided to remove my colon. My body just couldn’t take the pain caused by my damaged, inflamed colon.
  • At age 11 (or was it 12?), I had another surgery to remove a piece of my small intestine due to an intestinal blockage caused my scar tissue. This surgery, unfortunately, reduced my chances of having a j pouch a procedure my doctors said I was a strong candidate for at one point.
  • Since the age of nine, I have been lucky enough to live free of any intestinal symptoms of IBD. My surgery was truly a life saver.
  • I experience chronic extra-intestinal symptoms some IBD patients face, from psoriasis to the rare pyoderma gangrenosum (near my stoma).
  • That I lived with my rectum until 2015, in effect cementing my “permanent” ostomy status.
  • That life with an ostomy has been, and will continue to be, amazing.

While I wish that I made more people aware of my ostomy throughout some of my formative teen and young adult years, I never felt like I had to shout, “hey, I have an ostomy!” from the rooftops because life with an ostomy was well -- just regular life.

But as I’ve grown older, I’ve realized that when 100,000 new ostomy surgeries are still performed annually in the United States, it’s important now more than ever to be that guy who talks about his little stoma that could.

100,000 new ostomies per year in the U.S! That’s a sizeable amount of new ostomates. Some of them will get theirs reversed and some will end up with a continent alternative (like a j-pouch). There are many reasons for needing an ostomy besides Crohn’s or colitis, but the IBD community plays a large role and it’s necessary for patients, caregivers, and physicians to all have a voice in the conversation about ostomy awareness.

The more we talk about coping with an ostomy, the better (and faster) new ostomates can adjust to their new stomas and ostomy appliances. The more we discuss problems we have with our ostomies, the more medical product innovation we can push forward to make recovery time more streamlined and appliances lighter, more comfortable, and more cost effective. The more of us who say, “Hey, I have an ostomy!” the more people will ask, “oh, what’s that!?” and the more people will know they’re actually pretty cool and not weird (at all).

More discussions, conversations, and awareness. That’s what we need.

The ostomy community is resilient. We got this¬—for each other and soon-to-be ostomates alike.

I’m proud to be a part of that community, and I look forward to doing my part to spread awareness (while continuing to eat my tacos, of course).