Marathon #42 – 26.2 for Shaun


Shaun’s Story:

My journey with IBD is a long one, so strap on in.

I was diagnosed at the age of 4. My mom, a single parent, sacrificed everything to take care of me. We tried every treatment available, but nothing worked. This was back in the mid-90s and my options were slim.

I was admitted to Boston Children’s Hospital when I was 9, one of many hospital stays. It was during that hospital stay when my medical team decided they had to operate. With surgery being my last remaining treatment option, they removed my entire colon that day.  This marked the start of my 22 year journey with an ostomy.

The physical challenges of ostomy life were easier to overcome than the emotional ones. I struggled with feelings of embarrassment, self-doubt and anxiety. And I’m not going to lie, I still struggle with some of these feelings today.

Looking back on it, my ostomy was there for every defining moment in my life. My first dates, my first day of college, my first marathon. My ostomy gave me the strength to achieve.

Yet, I never wanted to be defined by the bag. I even had difficulty telling close friends.  I lived in fear and silence as a patient and ostomate for 18 years. 18 long years.

In October 2015, I volunteered for my first event with the Crohn’s & Colitis Foundation. Since then, I never looked back. I joined the Young Professionals Committee, traveled to Capitol Hill (not once, but twice) to advocate for step therapy reform to give power back to patients and their physicians to improve access to care, and have had my patient story seen by millions of people through the Foundation website and social media channels.

I defined a new life where I embraced my journey with IBD. And I owe this transformation to the Foundation and the Young Professionals Committee, who welcomed me with open arms since day one. Because of that, I now have the courage to be a voice for patients who don’t have one.

Amidst the current public health crisis other patients like me may not have the chance to be supported by the Foundation, even when the need for support is greater than ever before. My sincere hope is to:

  • Define a future of inclusivity and stigma-free perception of these diseases.
  • Define a future that involves more cost effective access to life-saving treatments.
  • Define a future free of IBD, because IBD will never define us.

I’m lucky living a full life thanks to my ostomy, but surgery itself is not a true cure, because there is no cure. I will not allow our progress towards a cure to take a break when the need has never been greater.

Today, October 3rd is Ostomy Awareness Day.

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).

Running 26.2 for Shaun on Ostomy Awareness Day!

Marathon 42 – Recap

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