Living with an ostomy is never a journey anyone plans for, yet within our Revel community, we see how strength and resilience can grow from the most difficult chapters. Today we’re honored to share the story of one incredible member - Erica Kozachyn - whose path to her ileostomy began long before she ever knew what a stoma was. After decades of symptoms, countless medical appointments, and a flare that changed everything, she finally found the relief her body needed — and the confidence to care for her stoma with the help of her medical team and, ultimately, Revel. This is her story, in her own words.
“It Started Long Before I Realized”
For as long as she can remember, something felt off — even as far back as grade school.
“The first instance of not being able to ‘go to the bathroom’ that I can remember was in grade school… I thought this must happen to everyone, so I never said anything.”
By 18, she finally mentioned it to her primary doctor, who was shocked to learn she hadn’t moved her bowels in weeks. That moment began years of medications, referrals, GI visits, emergency rooms, and attempts to find answers.
While she and her doctors believed they were addressing “just constipation,” more symptoms developed: frequent infections, dislocations, vomiting, and overwhelming fatigue.
A Decade of Searching for Answers
In 2015, she was diagnosed with Ehlers-Danlos Syndrome and GI dysmotility, two puzzle pieces that helped explain years of discomfort.
Then in 2019, a clinical trial at Johns Hopkins changed everything. She was diagnosed with Autoimmune Autonomic Neuropathy and began IVIG treatment.
“It was a miracle for me. Almost every symptom I had been struggling with for over a decade became manageable or disappeared entirely. All but one…”
Her colon still refused to move, despite trying every medication, bowel prep, and irrigation system available.
A gastric emptying study revealed severe delays, and surgery was mentioned — but she wasn’t ready yet.
A Flare That Changed Everything
In 2024, after years of relative stability, her symptoms suddenly spiraled. ER visits, dramatic weight loss, and unmanageable pain brought her back to a surgeon — this time ready to hear all options.
A new gastric emptying study revealed the truth: her colon had stopped moving entirely.
The surgeon recommended removing the colon and creating a permanent ileostomy, explaining that the surgery might also improve her stomach and small bowel motility.
“She told me this would not be reversible… but that it may improve my motility overall. With her advice and the support of my husband, family, and friends, we set the date.”
In December 2024, she received her permanent ileostomy.
Awakening to Hope — “A Fog Lifted”
When she woke up from surgery, the difference was immediate.
“It felt like a 10-year fog had been lifted off my head.”
Her stoma — affectionately named Cecilia, or CeCe — was active within 12 hours. She was eating solid food within 24. Recovery wouldn’t be easy, but the hope was unmistakable.
Learning to Care for CeCe
The emotional and practical journey of caring for her stoma began right away.
“The first bag change was very emotional, but the ostomy nurse was amazing and made me feel very comfortable. They walked me through all the products and supplies I would need for the rest of my life and gave me some tips and tricks.”
Over the next few weeks, the nurse continued visiting her at home, ensuring she was confident and safe caring for CeCe. But soon, she encountered an issue many new ostomates face: pancaking.
“I began having issues with ‘pancaking,’ which is when your output just sits above your stoma instead of sliding down your bag. While not a glamorous topic, it is one that MUST be talked about with new ostomates.”
Baby oil seemed like a solution — until it damaged the plastic of her bag, creating an entirely new set of problems.
She kept experimenting, searching, hoping for something that would help.
Discovering Revel — “The Game Changed”
One day while scrolling Instagram, she came across another ostomate talking about Revel’s bag lubricants — something she didn’t realize even existed.
“I didn’t even know these types of products existed, let alone that so many variations existed.”
She immediately went on to try every brand she could find, including Revel.
The difference was clear.
“While many of the brands left weird odors or needed to be used several times a day, Revel provided exactly what it advertised: a lubricant that lasted all day, making it easier to empty your bag, with smells that were not overwhelming but got the job done.”
After weeks of trial and error, she finally found her answer.
“While it took me some time to find them, Revel is my go-to bag lubricant now. If you have an ostomy, Revel is a necessity, not an accessory.”
Moving Forward With CeCe
CeCe was created on a Friday; she was home by Monday night. Recovery continues, and while it hasn’t been effortless, it has been transformational.
Her ileostomy has given her something she hadn’t felt in years: relief, clarity, and the ability to live without constant pain.
“Life with CeCe is way better than life before her — and even better now that we use Revel.”
We are deeply grateful she chose to share her story with the Revel community. Her honesty, courage, advocacy, and humor bring light to a journey far too many navigate alone.
Story shared by Erica Kozachyn, Annotated by Tara at Team Revel