By Celeste Gracey
For the Bellevue Reporter
At 5-feet tall and only 67 pounds, 13-year-old Chris Adams was dwarfed by his classmates on the basketball court. Once a hearty boy, he had stopped growing a few years earlier when his diarrhea, nausea and pain began. Although a psychologist had been seeing him for the stomach issues, his mom knew it was something more serious, when that day he stopped dribbling midcourt and began throwing up.
A pediatric gastroenterologist diagnosed Adams with Crohn’s disease, an illness where the immune system attacks otherwise healthy tissue throughout the digestive tract. At the time, the best treatment for Adams was steroids and a gastrostomy tube (g-tube) to keep up with the lost nutrition.
While Adams is now benefiting from new medicine for people with inflammatory bowel disease (IBD), which also includes ulcerative colitis, the Bellevue resident is using his 33 years of experience with the disease to find cures and help patients on their journeys until one is found.
One major component of that help is education. Adams chairs the Crohn’s and Colitis Foundation of America’s Northwest chapter (CCFA), whose office has been quietly nestled on Lake Bellevue for 15 years. To better reach the Eastside, the chapter is bringing its Fall education conference to the Meydenbauer Center from 9 a.m. to 2 p.m. on Sept. 15. The $10 admission includes lunch. To register or for more information, go online to https://www.crohnscolitisfoundation.org/chapters/northwest.
Patients with these complex illnesses are often faced with a myriad of decisions, and doctors don’t always have time to explain as much as they would like. The speakers, who are all researchers or practitioners in the field, volunteer their time to help fill this gap.
The event also allows patients to connect, removing a sense of invisibility, said Lindsay Masters, an event speaker, IBD patient and a nurse who specializes in IBD care at Bellevue-based Washington Gastroenterology.
“The general population doesn’t usually talk about their bowels in day-to-day conversation. This often leads to a sense of isolation, especially in patients who are newly diagnosed,” Masters said.
That sense of isolation ended for Adams when he made an unexpected friend. Pearl Jam’s guitarist, Mike McCready, decided to publicly share about his Crohn’s Disease for the first time at a CCFA luncheon. When they met, it was also the first time either of them had connected with another Crohn’s patient.
McCready was drawn to Adams by, “his positive outlook on life and his sense of humor,” he said in an email.
Adams was a diehard Pearl Jam fan, and the music had been a meaningful distraction during some of the hardest parts of his battle with Crohn’s, he said. He has broad shoulders and at 5’7” takes the stance of an athlete. (His siblings are about 6’4.”) His eyes are piercing, even under his black Pearl Jam baseball hat, as he asks about my health. His thin lips seem to always rest in the shape of a smile when he’s not speaking.
Today, he manages McCready’s vinyl-only label, HockeyTalkter Records, and helps advise the family’s philanthropic endeavors.
“Chris knows how to organize and execute events better than most people I know. If he’s part of something, I know it will be first class,” McCready said.
While the relationship triggered his interest in the CCFA, it’s his own story that taught him the importance of this work.
In middle school, the nighttime g-tube feedings got him “healthy enough” to function, however life was still a struggle. Adams was cut from the varsity baseball team.
“Crohn’s and colitis patients get so used to feeling ill that it becomes the norm. It’s unacceptable,” he said.
Frustrated with his health, he sulked home and flipped on MTV, when a music video from Pearl Jam played. The chorus struck him, “I’m still alive.”
His life had been challenging and this song wasn’t meant to be positive, but to Adams those three words were an encouragement. “I’m still alive,” he thought. In an era when Crohn’s patients died more frequently, it had even more meaning. That was the moment he became a “music junky” and a diehard Pearl Jam fan, he said.
Every patient experiences Crohn’s differently. For some the onset is so quick, it becomes an emergency, before a diagnosis is made. For others, it takes years to make a diagnosis. IBD patients are typically diagnosed between ages 15-35. Doctors often first jump to more common issues like internal hemorrhoids or irritable bowel syndrome (IBS). The CCFA estimates it effects about 1.6 million Americans.
The disease can bore holes called “fistulae” through the bowel wall. Although this is the most common in the rectum, the fistulae can even form tunnels to other organs and even outside of the body.
Often scar tissue from untamed inflammation narrows the bowel until it blocks it altogether, a life-threatening emergency called a “stricture,” which is marked by heavy pain and vomiting.
Eventually Adam’s scarring was too great. When he was 25, a surgeon offered an exploratory surgery. Doctors planned for him to be under the knife for a couple hours, but they ended up taking eight. It would be one of seven major surgeries he would experience that year alone.
Stitching inflamed bowl back together is much like sewing tissue paper. Small holes began to form in his bowel wall, and the contents of his stomach began to spill into his abdominal cavity. During one hospital stint, Adams stood up from his bed and pus began pouring from his incision. The smell alone was nauseating. He had gone septic.
After an emergency surgery, the doctor told his mother that Adams might not wake up. Surgeons put drain tubes in his abdomen while he healed. Every night in the hospital, he fell asleep to his Pearl Jam DVDs. Sometimes his surgeon would come by and watch it with him.
Once during this year of hospitalizations and surgeries, he was hanging out with some friends at a barbecue, drinking his Gatorade, when a friend asked why the tubes were draining the same fluid he was drinking. He knew it meant he had another leak.
A few months later, his surgeon found the last hole in the valve between his colon and his small bowel. She removed it, replumbing his system, and the operation changed his world. He couldn’t recall when his bowels ever worked that well.
Shortly after, he was on his way to a Pearl Jam concert, when he got a call from his aunt. McCready had shared that he too had Crohn’s Disease.
“It was cathartic, knowing someone that successful also has this disease,” he said.
When he heard McCready had plans to speak at a CCFA luncheon, Adams brought 36 people with him. In a way, it was McCready’s “coming out party.” He met the whole Pearl Jam band, which was there for support.
The meeting was a catalyst for their relationship, but it also pulled Adams into the world of philanthropy. In the 17 years he’s volunteered with the CCFA, he’s run 32 half-marathons, attended Camp Oasis for kids, and organizing flag football fundraisers at CenturyLink Field.
“Chris’ heart is huge, and he knows how to contribute to the Crohn’s and Colitis Foundation better than anyone I’ve ever met,” McCready said.
Soon after meeting McCready, Adams planned to help at a Pearl Jam fundraiser, when a rare opportunity to write the set list came up. For Adams, it was a dream come true, he said.
The band used it and then surprised him by taking it to the Gorge Amphitheatre. When they got to his favorite song, “I Am Mine,” they dedicated it to him. A few of the words speak to the work he’s done with the CCFA and the positive attitude he’s carried through difficult times.
The lyrics read, “I know I was born, and I know that I’ll die, the in between is mine.”
Celeste Gracey is an award-winning journalist and a former Sound Publishing reporter.