When Crohn’s disease left 14-year-old Coltyn fighting for his life, he turned to alternative medicine. Leaving his mom and siblings in Illinois, he and his dad set out to Colorado in hopes of accessing medical marijuana.
“We put them in the car with cash and clothes and said ‘go find something,’” remembers Wendy, Coltyn’s mom. “They were just going to visit. We didn’t know exactly what we were going to do. We were lost and scared. We just knew we had no other option.”
Coltyn had been battling Crohn’s disease for three years. In 2011, he experienced a near-death drowning in a lake while attending a Boy Scout outing. Shortly after the incident, he became ill with a bacterial infection. Suddenly his health worsened. In 2012, Coltyn visited the Mayo Clinic, where he was given an official diagnosis of Crohn’s.
The search for treatments
So began his journey of intense medications and treatments. Coltyn tried Asacol, then Entocort, but experienced no symptom relief. His symptoms became so harsh that he withdrew from all social interactions and activities. He was constantly weak and in intense pain.
The next treatment he tried was Remicade infusions. After six treatments, Coltyn developed rheumatoid arthritis, drug-induced lupus, and serum sickness, which occurs when the body makes antibodies against a medication.
Consequently, his doctor switched him to methotrexate, which caused nosebleeds and for Coltyn’s face to become swollen. He moved onto prednisone, but developed common symptoms, including fatigue, joint pain, and bone deterioration.
Humira was the next option. With hesitation, his parents agreed. But after a scare that he had contracted tuberculosis or T-cell lymphoma, Coltyn stopped Humira. At this point, he was underweight, weak, and unable to walk or stand for longer than five minutes. He used a wheelchair to go anywhere.
Coltyn was given three treatment options: Cimzia, which carries similar risks to Humira; surgery to remove his diseased bowel, which would leave him with a colostomy bag for the rest of his life; or alternative medicine.
Cry for cannabis
That was when his family began contemplating cannabis as a potential treatment. “Everything I had tried up to that point made me sick or caused serious side effects,” Coltyn says. “I didn’t have much to lose.”
Coltyn and his parents researched cannabis as much as possible. They found that reported smoking marijuana could help people with Crohn’s disease.
“I wasn’t going to smoke, but when my parents told me that from what they knew, cannabis oil doesn’t have any known side effects, I was on board,” says Coltyn. “Before we looked into cannabis, I was just told it was bad and that I should stay away from it. But I had faith in my parents. They had seen me go through so much.”
At that time, medical use of cannabis had been legalized in Colorado. However, Crohn’s disease wasn’t one of the qualifying diseases. Still, symptoms that Coltyn was experiencing did qualify.
In order for pediatric patients to receive a medical marijuana card, they must be examined by two doctors. After searching for the best doctors, Coltyn became the first registered pediatric medical marijuana user for Crohn’s disease in Colorado.
With no known dosage for his condition, Coltyn’s dad experimented with adding cannabis oil to brownies.
“After the first few weeks, I started feeling better,” Coltyn says. “But I will never touch a brownie again, whether it’s medicated or not. I had to eat about two every day for a month.”
Trial and error
Eventually, Coltyn’s dad connected with a caregiver. The caregiver didn’t know much about Crohn’s disease, so Coltyn had to figure out his own dosages through trial and error. The family kept a journal about how Coltyn reacted to each dosage, and adjusted accordingly.
They determined that he needs a 1:1 ratio of tetrahydrocannabinol (THC) and cannabidiol (CBD). They found that putting the combination in a capsule was the best method to get the medicine to his gut.
“After the first three years of pharmaceutical medication, all the doctors were trying to do was mask my disease. I really wanted to find a solution that would help me, and cannabis not only relieved the pain, but it also relieved the inflammation in my intestines and stopped my Crohn’s from having flares,” explains Coltyn. “Now nutrients I eat are absorbed, so I have energy and can grow.”
After taking cannabis for seven months, Coltyn had a colonoscopy. It showed no active Crohn’s disease, no ulcers, and no inflammation. And all biopsies and blood work came back healthy. Three years later, this is still the case.
Coltyn rates his pain levels at a 1 compared to his pre-cannabis days, when it remained at a constant 6 or 7. He’s gained weight and is active.
Due to the success, his family permanently moved to Colorado six months after Coltyn and his dad ventured there.
It’s not about getting high
To figure out the amount that helps him — but doesn’t make him high — Coltyn says he took the smallest amount he could. He raised it slowly up to just before the point that it would.
“A lot of people think there are only psychological effects to cannabis and it’s all about intoxication,” says Coltyn. “That can absolutely be the case sometimes. THC is intoxicating and enough can get you high. But that isn’t ever my intention.”
“I’m always below that point and I never get high. I may technically be under the influence, but never intoxicated.”
“Taking cannabis is the most relaxing and Zen treatment he has ever done,” says Wendy, who notes that the pharmaceuticals her son took in the past — including morphine, Dilaudid, OxyContin, and Tylenol 3 — were harsher on his body. “Because we’ve seen him on so many pharmaceuticals, and we researched the fact that cannabis wasn’t going to kill his liver or kidneys, or give him all these horrible side effects he had experienced, we weren’t afraid.”
Access for others
Early on, Coltyn’s parents were told by GI doctors that they’d report them to Child Protective Services if they continued cannabis use.
“After my colonoscopy showed how healthy I was, and the fact that I’ve stayed so for so long, that certainly changed,” says Coltyn.
After seeing Coltyn’s success with cannabis, he says his GI doctor accepts that it may be working. In fact, when other patients ask her about cannabis, she refers them to Wendy.
Still, when Coltyn sees his GI doctor, he’ll show her what dosages he’s taking. “But she can’t even hold the bottle,” says Wendy. “She can get into a lot of trouble for that. And that needs to stop. GI doctors, epilepsy, and cancer doctors need access to the ability to understand and research this and prescribe it without fear of retribution or losing their license.”
Coltyn and his family take this to heart. They teamed up with and to speak to legislators in Washington, D.C. They’ve testified for numerous bills in Illinois and Colorado, and have helped with legalization efforts across the United States, including in Arkansas, Missouri, Nevada, Oklahoma, and South Dakota, Nevada.
“We want people to know this is not about getting high,” says Wendy. “This is a medicine and people in illegal states are dying. Health shouldn’t matter what zip code you’re in. It’s not fair for kids like Coltyn who had to pick up from their town and move.”
Coltyn advocates on an individual basis, too, with his initiative .
“I’ve talked to people around the world about cannabis, and have been to countless camps for kids with Crohn’s disease who don’t even know what the word ‘remission’ is,” says Coltyn. “It feels amazing to explain what cannabis is, how it can help and change their lives.”