In this Tubie Hero Spotlight, discover how Elena Zajac became a leading voice in the chronic illness community and an advocate for StomaEase™, StomaDisc™ and the Enclean® Brush.
At LumaCleanCares, we are constantly inspired by stories of perseverance and innovation within the healthcare community. It’s often how we identify unmet gaps in patient care, and design innovative medical solutions.
One such story is that of Elena Zajac. Elena struggled, undiagnosed, with Lyme Disease for decades before it destroyed her gut. She was eventually put on a feeding tube for 24-hour continuous feeding. Elena faced dark days on her journey to diagnosis (and even after), but she didn't let that didn’t stop her from living life to the fullest.
Today, she is a well-known chronic illness advocate. You might recognize her from the award-winning documentary The Monster Inside Me. The film takes a deep dive into “deep hidden layers” of living with Lyme Disease.
Keep reading for an inside look at her remarkable journey. And, skip down to the bottom of this post to see Elena’s how-to video series on using StomaEase™, StomaDisc™ and the EnClean® Brush.
Elena was bitten by a tick as a kid, but thought nothing of it. For 11 years, she struggled with allergies, asthma, and infections. Antibiotics would serve as a temporary fix before she got sick again and again. In her twenties, she was misdiagnosed and thrown into the mental health field. Shortly after, she experienced extreme weight gain, and then suddenly, extreme weight loss.
Finally she got a diagnosis: Lyme Disease. During her Lyme treatment, she was put on her first feeding tube in 2014. She said it was the reason she got back to a healthy weight and was able to have her tube removed for many years.
With a severe lack of appetite, and an inability to absorb nutrients properly, Elena’s weight was dangerously low again in 2024. She said: “I couldn’t think straight; it was affecting everything in my life.”
They placed a feeding tube, and she’s been doing great ever since.
Elena had a good experience with her feeding tube placement (this time around), but she still experienced severe leakage and burning. She wondered, “Am I going to be able to handle this, knowing I will have this tube the rest of my life?”
Her stoma was red, hot and nearing infection. Her doctor suggested powder and gauze, but it didn’t help. Luckily, Elena stumbled upon StomaEase™, StomaDisc™ and the EnClean Brush through her online research.
“I started using StomaEase™ and StomaDisc™, and within days, I saw a MASSIVE difference,” she said. “Now I use it daily to preventatively keep leakage at bay. I actually forget I have my stoma now. It made all the difference.”
She added: “There was a bit of a learning curve figuring out how much powder to use and how often to clean it and reapply, but I am happy to report that this was the product I was searching for!”
Today, Elena is also an avid user of the EnClean Brush®, to keep her tubing clean and sanitary. The EnClean Brush is an important part of her daily routine, saying: “Just like any other meal, you want to wash your dishes before you eat.”
Elena took to social media to share her story. There, she connected with the producers of the documentary on living with Lyme. Elena not only stars in the documentary; she also helped produce it.
Elena boldly shared her story and struggles, including its effect on her marriage and family life. The documentary, The Monster Inside Me, had an overwhelming response; it’s been selected for various film festival awards, and viewed by thousands in 40+ countries around the world.
But, she didn’t stop there. Elena worked with her local state representative to share her story at the State Capitol building in Connecticut. It took three years of hard work, but she was able to get May officially recognized as Lyme Disease Awareness Month.
Elena continues to be a strong advocate for the Lyme and tubie community, using her Facebook page to share information with the general public.
It took Elena years to get where she is today. She understands what those days of hardship can feel like.
“I was tired of fighting,” she said. “I was ready to give up. It makes you look at death in a different way. But, I looked at my kids and my husband and thought, I have to keep going. You can get through it. Keep pushing forward, and like Dory says … just keep swimming.”
She found a way to turn her adversities into something meaningful—a purpose to help others in their journey to diagnosis and better health.
“You are not alone. There are so many of us out there struggling with illness. The key is finding community and joining in.”
She added: “Be grateful for every day. Everyday is a new start. There will be bumps; it’s not easy, but you have to start fresh with the attitude that it’s going to be a great day. You can do it.”
In the following video series, Elena walks you through how to use StomaEase™, StomaDisc™ and the EnClean Brush®. Follow along to get started with your LumaCleanCares products.
