Tag Archive for: Resilience story

Resilience Story: Matt Marra

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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. 

Resilience Story: Barbara Tischler

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From the ICU to the long road back to health and giving back to the ostomy community.

In the afternoon of July 17, 2016, I had just returned home from an ice cream social (and I had eaten ice cream at a party the night before, as well. More on that later). I felt tired, so I laid down for a nap. Almost immediately, I began to feel abdominal pain. I went to the bathroom to see if I could alleviate matters by sitting on the toilet. For about a month, I had been having some constipation, but it had not raised any major red flags for me. And I had just turned 46 — too early for a colonoscopy at that time. When sitting on the toilet didn’t help and the pain got worse, I called for my husband. By the time he came upstairs, I was lying on the bathroom floor in tremendous pain. My stomach had become extremely distended, and I had removed a lot of my clothing because it was binding me. My husband called 911. The paramedics put me on a stretcher and carried me down the stairs and into the ambulance.

I remember the ride to the hospital, and I have a few sketchy memories of being in a hospital room, trying to hold in an enema, but failing to do so because of the pain. At that point, the doctor in the ER thought I just had severe constipation.

The next thing I remember is waking up in the ICU almost a week later in a heavily sedated fog and with a ventilator tube stuck down my throat. At some point later, the ventilator tube was removed (a day after a failed attempt to do so). My husband had to explain to me that a CT scan did not show anything wrong, but I was admitted to the hospital due to my pain. When my blood pressure dropped precipitously on July 19, the on-call surgeon was pulled in. He looked at the CT scan and saw evidence of air, which is a sign of a perforation. I was rushed into emergency surgery, where the surgeon found a cancerous tumor in my colon that had caused my stool to be impacted, which in turn, had triggered a massive perforation of my large intestine. I was in septic shock and close to death. The surgeon removed the tumor, resected my colon, and gave me a colostomy. I owe my life to that surgeon.

I found the right pouching system by making a multitude of phone calls and not giving up or settling until l found the right solution for me.

Initially, the plan was that in two to three months, I would have the colostomy reversed. Then, that changed to include six months of chemotherapy to eradicate any microscopic cancer cells floating around in my abdomen, due to the contents of my colon having been dumped into my abdomen. After that, I would get my colon reconnected.

However, that was not to be. I was starting to recover a bit in a regular hospital room. But due to the perforation, I had developed multiple abscesses of infected fluid in my abdomen. I started with a drainage tube, but eventually, my surgeon discovered that there were many abscesses unreachable by drainage tubes. So, on August 5, I went into surgery to drain all the areas of infected fluid. Unfortunately, I ended up back in the ICU on a ventilator. And I was told that because the infection had damaged organs, my spleen, 60% of my small intestine, and the entirety of my colon were removed. I now had a permanent ileostomy. And despite the second surgery, I eventually ended up needing three drainage tubes for three new abscesses that formed.


Halloween 2018 – my group fitness exercise class, where I showed my ostomy pride and spread awareness by wearing an ostomy pouch on the outside of my clothes, with a stoma sticker in the center.

I was quite sick and ended up staying in the hospital a total of 52 days, followed by two weeks at a rehab facility. During all this time, my husband was amazing. He kept friends and family up to date with nearly daily emails, on top of working full time, taking care of our 12 and 15-year-old sons, and visiting me in the hospital almost every day. My mother-in-law, friends, and people from my synagogue helped out with meals for my husband and sons. I received so many flowers that my hospital window sill looked like a florist shop. I also had an incredible number of phone calls and visits from friends and family. My parents came from Arizona and my brother came from California at one point while I was in the hospital, and a sister-in-law came from Texas while I was in rehab.

Once I got home, I had a PICC line through which I had to give myself antibiotics (continuing on with the antibiotics I received the entire time I was in the hospital and rehab). I bottomed out at 70 pounds and had little energy. I was also experiencing frequent ostomy leaks and still had one last drainage tube that had to stay until the abcess fully drained (which didn’t happen until November) and a fistula that had formed closed up (which didn’t happen until April 2017). I became very depressed and started to think about ways I might end it all. When I started verbalizing these suicidal thoughts, my husband told a home healthcare nurse, who urged him to take me to the hospital. I did not want to go, but when my 12-year-old son said that he did not want to NOT have a mommy, I agreed to go. Even though my stay in behavioral health did nothing to solve my ostomy leaks or my weight loss, I came home with my head screwed on a little more tightly.

There is nothing like being in a room with other people who know exactly what you are going through.

The next several months were a whirlwind of doctor appointments and drainage tube checks at interventional radiology. A caretaker helped me during the day and got me to my medical appointments while my husband was at work. Throughout the fall, I continued struggling with ostomy leaks, often happening in the middle of the night. My husband helped clean up my messes and helped me with my pouch changes. I had three public leaks, which were mortifying.  I also started to notice numbness in my feet. I figured out it was neuropathy caused by my long-term antibiotic use. As soon as the last abscess was completely drained, I called my infectious disease doctor and asked if I could finally stop the taking the antibiotics. Thankfully, he said yes. While the neuropathy didn’t spread any further after that, I unfortunately ended up with permanent numbness in my feet. I have a fuzzy feeling in them to this day, although I don’t think about it most of the time.

Eventually, I got two months of at-home TPN to help with my weight. I had become malnourished because my body was not absorbing nutrients. With the TPN, one thousand calories a night went into my body intravenously, bypassing my apparently faulty digestive system. This helped tremendously to boost my weight. And while it took me time to feel comfortable with the idea of eating ice cream again (given that my harrowing experience started after eating ice cream), eventually I did!

Barbara with fellow ostomate and Illinois Ostomy 5k co-director Bret Cromer.

After becoming fed up with ostomy leaks, I called all the ostomy pouch manufacturers and tried tons of samples. I kept getting my hopes up that each new pouching system would work, and then it would fail. However, I eventually found a winner with a custom pouch from Nu-Hope. It gave me my life back. I was able to go back to working with my organizing clients in their homes without worrying about leaks.

My father found out about the Ostomy Support Group of DuPage County and contacted its leader, Bret Cromer. A friend introduced me to a fellow synagogue congregant and member of this UOAA affiliated support group. She encouraged me to start attending meetings. In January 2017, I finally felt well enough to go to my first meeting, and I have been an active member ever since. There is nothing like being in a room with other people who know exactly what you are going through. I have made great friends and learned about helpful products that I have incorporated into my ostomy care routine. Fellow members helped me when I first joined, so now I try to pay it forward by helping new members.

I was a long-distance runner from age seven through eighteen. After years of suffering from shin splints every time I tried to run, I finally figured out in 2012 how to plant my foot when running to relieve stress on my shins. After my intestinal surgeries, I gradually got back to taking the group fitness exercise classes I had taken pre-illness, but every time I tried to run, it felt like I had cement blocks on my feet. Eventually, though, I started to get a bit more spring in my step. I tried running again one day, and while initially I had the cement-block feeling, I kept going and it got easier. I was thrilled to be able to run again!

In 2018, I saw the UOAA webpage of Run for Resilience Ostomy 5k runs throughout the country for Ostomy Awareness Day. That motivated me to organize my support group’s first informal Run for Resilience 5k. I organized these informal virtual ostomy 5ks every year through 2023. I also became the treasurer for my support group in 2023, and in 2024, Bret Cromer and I co-organized our first official UOAA run, located in Downers Grove, Illinois!

My husband and older son have been very involved with the support group. They attend social/holiday gatherings of the group with me, and they have helped at the 5k events. As for me, being an active member in the support group and organizing the 5k events make me feel pride in having an ostomy. I still have private pity parties occasionally, but overall, I feel that I am an emotionally strong and resilient ostomate.

October 5, 2024 – my older son, me, and my husband at the Run for Resilience Ostomy 5k in Downers Grove, Illinois.

My parents have a charitable fund through the Arizona Community Foundation. They have generously donated to my support group and to the UOAA through this fund. I am so grateful for their support. In 2019, I was greatly honored to be inducted into my high school Athletic Hall of Fame. At the ceremony, my father introduced me, and I shared my cancer and ostomy story in my acceptance speech.

I never received chemotherapy. By the time I was healthy enough for it, my oncologist said it would not be very effective. Instead, he watched me very closely with frequent CT scans and bloodwork. Every time anything looked suspicious, I had follow-up tests and biopsies that thankfully showed benign masses, some of which resolved on their own. Finally, in June 2023, after having several clean scans, my oncologist told me about a new option called a circulating tumor DNA test. I jumped at the opportunity. A lab took my original tumor and determined its DNA. Then, the lab looked for that DNA in my current blood plasma, and there was no evidence of it! My oncologist released me from cancer surveillance. Getting the good test result and saying goodbye to my oncologist were very emotional moments for me.

Being an active member in the support group and organizing the 5k events make me feel pride in having an ostomy.

Among many things throughout my journey, I have learned the power of self-advocacy. Here are a few examples. I found the right pouching system by making a multitude of phone calls and not giving up or settling until l found the right solution for me. Through online research, I discovered a much more palatable oral contrast for my CT scans than barium sulfate, called water-soluble iodinated oral contrast. It turned out that my cancer center knew about this option, but did not offer it to me until I asked if they had it. And I had to make multiple requests to speak to my GI doctor to request blood work to prove to my GI doctor that I did not have Celiac disease, after he claimed I did when an endoscopy showed flattened villi in my small intestine.

I have had several hiccups along the way involving hospitalizations related to my ostomy (severe dehydration and diarrhea, small intestinal bacterial overgrowth, and blockages) and tendinitis injuries that make it difficult for me to run, but somehow, I always manage to bounce back.

Thank you to Barbara for sharing this inspiring story and giving back. To learn more or sign-up for a Run for Resilience Ostomy 5k near you or virtually visit ostomy.org/5k. To celebrate the resilience of Barbara and her ostomy community donate to the Downers Grove, IL Run for Resilience Ostomy 5k.

Resilience Story: The Wheelin’ Sportswoman

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By Ed Pfueller, UOAA Communications and Outreach Manager

Elizabeth Shank was paralyzed in an accident at the age of 20 and has had an ostomy for the past year. She continues to embrace the things she loves most.

Shank, 50, became an outdoors enthusiast during her life with a wheelchair. For almost a decade, she had the dream of obtaining a specialized trackchair to facilitate her access to fishing, hunting and camping locations.

Shank’s spirit of resilience and determination caught the attention of the Mahoning County (Ohio) Federation of Conservation Clubs and they helped rally several civic organizations to the cause of raising the $24,000 for the trackchair.

She shed tears of joy earlier this year when they surprised her with (not only a new trackchair) but a customized trailer with her name and the logo “The Wheelin’ Sportswoman” emblazoned on it. “I can now go over rocks and get more places,” Shank says.

Her love of skeet shooting and hunting has only grown over the years by working with the National Turkey Federation and people dedicated to getting disabled veterans and other people like her access to the outdoors.

Shank has lived a very active life with her husband of 23-years and a 14-year old son. In addition to sporting pursuits, she has enjoyed horseback riding and volunteering with local nonprofits.

In 2007-2009 she was twice awarded 1st runner-up in the Ms. Wheelchair Ohio competition.

She started a new job about two years ago and was enjoying good health. Then, unexpectedly she was hospitalized with a serious intestinal illness.

Shank was diagnosed with ulcerative colitis. Because of the location of her T-12 L-1 spinal cord injury, she did not experience the pain symptoms of the sickness.

In July and August of 2023 her hospitalizations became more frequent and life-disrupting. “That’s when it finally beat me. It got to the point when I could not have any happiness, I’d get sick and my gut would retaliate and I’d end up in the hospital again,” Shank remembers.

“To me the ostomy has been a lifesaver.”

In the last incident, she was taken by ambulance to the hospital because of pain and it was determined she had pancolitis of the whole colon. “They said there is nothing else we can do for you, you’ll need to go to the Cleveland Clinic.” Ileostomy surgery came next. “I was not reluctant because I knew it would help me,” she says.

“Funny thing is, once I had that ileostomy that next morning they came into take my blood pressure and it was back to normal after being very high.”

Despite having her colon removed on September 19, 2023, the next month she was back out in the field hunting. Things were turning around for her with the help of the ostomy.

“I could be who I was before, not always feel down, always worried and not wanting to do anything or have fun,” Shank says with fondness.

Shank did experience some typical issues such as sores however and reached out to a Facebook group for women with ileostomies.

There she met Angie Davenport an ostomy advocate and UOAA volunteer.

“When I was down Angie was very helpful and sent me messages of encouragement,” Shank says.

“Although we haven’t met in person yet, I feel she’s a very close friend just from our interactions and being able to give her encouragement concerning living with an ostomy,” Davenport says.

Davenport is the race director for the Trumbull County Run for Resilience Ostomy 5k in Niles, Ohio this year on Ostomy Awareness Day, Saturday, October 5 to benefit UOAA. She is also founder of the nonprofit Blessed with a Bag.

“I’m hoping to meet her at one of our local ostomy support group meetings or the October race. She’s definitely an Ostomy Warrior and an inspiration to other ostomates,” Davenport says.

“I’m looking forward to going around the track. I just want to go and help her out, with everything she helped me with,” Shank says of the Ostomy 5k event.

The message of Ostomy Awareness Day resonates with Shank.

“To me the ostomy has been a lifesaver,” she says.

“I’m open about things and was a mentor for spinal cord injuries so would help others with an ostomy as well.”

“If somebody did not quite know or was having a hard time I could tell them my story and let them know it will get a little easier, but it takes time,” Shank shares.

Shank says she is not shy about her ostomy. “l will let people know if it’s talkative or releases gas I will say ‘hey she’s a little talkative today,” she laughs.

“It’s part of me and has helped me live my life fuller then when I was sick with the ulcerative colitis.”

As for the rest of her Fall plans besides Ostomy Awareness Day? “You can find me in the woods,” she says. It’s hunting season after all.

 

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. To celebrate the resilience of the ostomy community donate to the Niles, Ohio Ostomy 5k and UOAA here.