Meet our new Ostomy Ambassador, Stalen! His inspiring journey as featured on “Stalen’s Way”, showcases the resilience and bravery of a young boy living with autism and significant health challenges. After undergoing life-saving ileostomy surgery, Stalen now lives life to the fullest, spreading awareness about autism and ostomies, and embraces activities he loves. His story is a testament to the impact of resilience and ostomy surgery in enabling children to lead fulfilling lives.
Stalen’s Journey with Autism and Health Challenges
When my son Stalen was 21 months old, he was diagnosed as autistic. He is also non-speaking. Stalen’s health problems began in 2018, and he struggled with a lot of pain, hospital admittances, daily enemas, and a low quality of life. He was diagnosed with severe chronic constipation and slow motility. It affected every aspect of his life.
We had to defer him from starting school for an entire year because his health was so unstable. Over the years, we tried many different treatment options, but none gave us results until his ileostomy.
Stalen’s Ileostomy Journey
On January 7, 2022, Stalen got a loop ileostomy. He had a cecostomy for 18 months prior, but it did not work well for him.
Both my husband and I were nervous about the ileostomy and how challenging it would be in addition to Stalen’s autism-related sensory aversions.
Stalen’s Brave Adjustment to Life with an Ileostomy
It wasn’t an easy adjustment for a 7-year-old boy to wake up with an ileostomy bag and an increase in his daily level of care and maintenance. But it was no match for our sweet boy’s bravery and positivity.
Our brave boy showed everyone what he was made of. He didn’t panic. He was smiling and walking the halls a few hours after surgery. His medical team were shocked. His resilience and determination were incredible.
Support from the Medical Team and Ostomy Nurses
We had an excellent medical team, including two fantastic ostomy nurses, who helped us adjust to life with an ileostomy and learn about the pastes, rings, and all the products.
Living Fully with an Ileostomy
Due to his sensory challenges, Stalen wears his bag outside of his clothing. He has an amazing collection of bag covers and loves choosing one to wear at the beginning of each day.
Stalen is now almost 9 years old and has had his ileostomy for over two years. (He also has a feeding tube because of his autism-related feeding challenges). Often, people ask me how having an ileostomy has limited Stalen, but it has only enabled him to live his best life.
Stalen’s Inspirational Progress and Achievements
Stalen is in grade two, communicates with a device, and loves telling jokes. He is a two-time author of a self-published joke book. He loves his community and spreading autism and ileostomy awareness.
Today, his days are pain-free, and he’s ready and able for every adventure! You can find Stalen smiling, watching, and daydreaming about hockey. He is a season ticket holder and never misses a chance to cheer on his favourite hockey team and friends—the Federicton Red Wings. He has learned to skate this year and is an aspiring hockey player. He enjoys jumping on the trampoline (with his ileostomy bag flapping in the wind), spending hours in the pool, playing challenger baseball, and all things hockey.
I am thankful that we took that leap of faith and for the ileostomy that has helped our boy shine as bright as we knew he could.
You can follow Stalen’s story on Facebook at Stalen’s Way www.facebook.com/Stalensway.
Stalen Living Life To The Fullest
Source
By Chrystal, Stalen’s Mom
Stalen is an 8-year-old boy with autism and developmental delays who faces challenges like pica, anemia, and bowel issues. Non-speaking, he communicates using Proloquo2go on an iPad. Despite his medical conditions, including an ileostomy and feeding tube, Stalen has a joyful personality, loves technology, and enjoys hockey, country music, and tickles. His mother, Chrystal, shares their journey to promote kindness, understanding, and acceptance for those with autism. Follow their updates on Facebook at “Stalen’s Way.”
Follow Stalen’s Way online!
Visit his website at www.stalensway.com, or follow him on social media!
The post Stalen’s Inspiring Ostomy Story first appeared on Ostomy Canada Society.