Resilience Story: Matt Marra

A couple years ago, I wasn’t thinking much about my health. I was a little overweight, but nothing alarming. Life was busy working full-time while chasing around two wild but wonderful kids under five.

Then in November 2023, everything changed. I started bleeding when I used the bathroom. Over time, the urgency and frequency increased, and I found myself going 6–8 times a day. After bouncing between urgent care, my primary doctor, and a GI specialist, I was diagnosed with ulcerative colitis in January 2024.

Those three months waiting for a diagnosis were a mental warzone. Googling symptoms like “dark red blood in stool” returns a fun list: hemorrhoids, IBD, and cancer. While I was relieved to finally have a diagnosis, IBD wasn’t something I ever imagined dealing with.

At first, I managed with diet. I avoided trigger foods and even used ChatGPT to check what I could safely eat when dining out. But during a vacation in February I flared badly. What was supposed to be a beautiful cruise celebrating my brother’s and sister-in-law’s marriage ended up being an endless visit to excursions on the toilet and lying in bed. On the flight home, I had to abandon my 3-year-old in his seat four separate times to rush to the bathroom. It was a rude awakening to how terrible ulcerative colitis and iBD in general could be, and created a new fear constantly in the back of my mind that the next thing I eat or do may make me sick for weeks at a time. Things did not get better when we got back.

On Monday, March 4th, I went to the ER thinking I’d get some medication and go home. Instead, I was admitted. “Steroids always help! You’ll be out in a few days,” they said. But by the weekend, I was even worse.

Then I tried biologics. “Infusions never fail,” they told me about 30 minutes before I failed my first one.

After multiple failed treatments, and now two weeks into my hospital stay, I was transferred overnight to a hospital in the city. Surgery was mentioned early on as a worst-case scenario, just in case. My brother had questions for the surgical team at that time, but I brushed them off: “We’re so far from that! There’s no way it’s going to happen.”

Flash forward to the third week. I was exhausted, nauseated, and in pain. Surgery stopped being the last resort. I wanted it. I told the surgeon I wished the decision would be made for me, because mentally, I wasn’t strong enough to choose that road on my own.

On Friday, March 22nd, after continued lack of progress, my care team made the call: it was time. My colon had perforated. I was rushed into emergency surgery for a total colectomy. I woke up with an ileostomy and a new chapter ahead.

Adjusting to a stoma was overwhelming. Seeing a piece of your intestine, or stoma, outside your body doesn’t exactly quickly become “normal.” I hadn’t even realized, 30+ years into life, that people pooped out of their stomachs. My wife and I were told we were brave during ostomy training, since many people can’t even bear to look at themselves post-surgery. I didn’t feel brave, just dazed. But I found ways, through products and routine, to feel okay in my own skin.

At the 5k, I met people who had lived with ostomies for years, people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

Matt Marra showing his ostomy belt while running the Run for Resilience Ostomy 5k in Illinois, his first year after surgery. Photo by Anne Marra.

Discovering My Resilience

Managing leaks, mastering appliance changes, showering without disaster, sleeping through the night without anxiety, all of it took time. There were 3 a.m. blowouts. There were tears. There was grief and anger.

But I adapted. The stoma became a part of me. Most of the time, I didn’t notice it — and neither did anyone else. I could eat again. I didn’t obsess over bathroom access. I had energy. I had my life back.

And most importantly — my ostomy saved my life.

I spent 30 nights in the hospital. On the worst days, walking three laps around the floor felt like running a marathon. I told myself: just make it to the next milestone. So when I saw the UOAA’s 2024 Run for Resilience Ostomy 5k in Downers Grove, Illinois, I signed up, not just to raise awareness, but to prove something to myself.

Crossing that finish line in just my second-ever 5k was emotional. It felt like a full-circle moment. I was back. Maybe not the same. But just as strong.

Support made all the difference. My wife Anne helped with bag changes, middle-of-the-night cleanups, and the emotional weight of it all. My brothers, Nick and Joe, made sure I was never alone during those long hospital nights.

At the 5k, I met people who had lived with ostomies for years — people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

From March 2024 to June 2025, I lived a very full life with my ostomy. I traveled to weddings in Mexico and Colorado. I climbed mountains. I flew to Austria and Slovakia for a week-long work trip. Ten-hour flights used to terrify me. Now? No problem. My ostomy didn’t hold me back. If anything, it gave me freedom.

I continue to push myself, no matter the challenges. To show my kids what resilience means.

To every UC patient I’ve talked to about surgery: no, I don’t get a commission. I just know what my ostomy did for me. How UC wrecked my life, and how surgery gave me peace, physically and mentally. I know my path was fast: diagnosis to surgery in five months. But in some ways, I’m grateful. I didn’t suffer for years. I got my life back sooner. For as mentally draining as it was to constantly worry about my health, what I was eating, and where the closest bathroom were – I can only imagine what that is like for those that have been through this for decades battling their chronic IBD.

My ostomy was temporary, though it felt like a permanent part of me. I had two more surgeries, in March and June 2025, to transition to a J-pouch. The stoma is gone, but the scar remains. A battle scar. A reminder. And something I’ll always be thankful for.

For most of my time with an ostomy, I asked: “Why me?” What were the odds? Could I have avoided this if one treatment had worked?

But near the end of my journey, that shifted. I started thinking: “Wow… I’m glad I had an ostomy.” Because it taught me I could not just survive with it but that I could live a full life with it. Looking back on those early conversations in the hospital, when the idea of pooping out of your stomach felt surreal, I never imagined I’d feel that way just one year later.

I continue to push myself, no matter the challenges. To show my kids what resilience means. That no matter what knocks you down, you get back up.

And this October, I’ll lace up again for the 2025 Run for Resilience for yet another milestone. Another chance to prove I’m still standing and thriving.

Visit Matt’s Run for Resilience fundraiser at https://runsignup.com/marra to support the nonprofit programs and services of UOAA. To learn more or sign-up for a Run for Resilience Ostomy 5k near you or virtually visit ostomy.org/5k.