Keagan Lynggard was diagnosed with Crohn’s disease when she was only 15. She underwent several abdominal surgeries that resulted in an ostomy, making her one of 5 million ostomates around the world. That number is rising 10 percent per year based on those living with permanent or temporary stomas.

Ostomy misperceptions

“I struggled for years with symptoms, saw a lot of doctors and made many trips to the emergency room,” said Lynggard, adding physicians suggested the cause was everything from menstrual cramps to a psychological disorder.

Once the accurate diagnoses was made, Lynggard prepared for her life as an ostomate. “There are so many misperceptions, especially since many people assume it is only older people who have ostomies or that it is smelly. I actually live a more fulfilling life after my surgery,” said Lynggard who whose active lifestyle includes everything from wakeboarding to skydiving.

Connect with other patients

Her advice to those facing an ostomy? “Pre-surgical is the time to get educated,” Lynggard said. “Reach out to resources from national organizations. An ostomy is life changing, but you need to know it isn’t a last resort treatment plan.”

Actually, Lynggard explained an ostomy can actually help patients enjoy a better quality of life than living with a severe disease.

Now an adult, Lynggard practices what she preaches as a public speaker and ostomy patient advocate. She helps others by raising public awareness through education, personal testimony and volunteer opportunities. Additionally, Lynggard travels the U.S. educating nurses and clinicians on the importance of pre/post-surgical education while also sharing patient perspectives.

“You are facing life with an incurable disease and a bowel disease, which let’s be blunt, isn’t a great subject to talk about, particularly in your teens.”

Patient-centered care is key

Michael Seres was diagnosed at the age of 12 with Crohn’s. He endured 20 operations and intestinal failure. He recalled the challenges of his diagnoses at a young age. “You are facing life with an incurable disease and a bowel disease, which let’s be blunt, isn’t a great subject to talk about, particularly in your teens,” he said. According to Seres, while more people are aware of Crohn’s and other digestive issues today, stigmas still persist.

Eventually, Seres became the 11th person in the U.K. to undergo a small bowel transplant leaving him a stoma patient. During his recovery from his transplant five years ago, Seres starting blogging to keep friends and family up to speed on his recovery. His medical team tracked his blog and shared it with other patients.

“The blog grew to 100,000 followers,” said Seres, “and it really helped people to understand what it is like to walk in my shoes. Today, I get to talk to other transplant patients and mentor those with Crohn’s or other disease. Part of treatment should be to ability to talk to other patients to see how they cope.”

Ostomy innovation

Out of his personal issues and needs, Seres sought solutions to challenges of knowing when bags need to be emptied. Chatting with other patients, he discovered that was one of the major issues plaguing them.

With patient needs at the center, he helped conceive a device using Bluetooth technology to monitor pouch content. With that as the centerpiece, he formed 11 Health and Technologies Limited, a connected medial device company. The system not only alerts patients when the bag is near completion, but the real time data gleaned assists medical teams in better health management. That leads to healthier patients and fewer returns to the hospital.

“I’ve been a patient with a bag for more than 30 years and my goal was to turn a dumb bag into a smart bag,” Seres concluded.