For most of his adult life, Billy Dowell Jr. has lived with a serious immune-mediated disease process that has threatened not only his dream of playing professional golf, but his very existence. His illness caused painful pelvic joint inflammation, resulted in a perforated bowel, and led to glaucoma. It’s been ongoing, unrelenting, and extremely unpleasant.
“I’ve been through the roughest of the rough,” says Billy, a resident of Jacksonville, Florida, who moved there in May 2022 to be near his Mayo Clinic care team.
Billy’s multiple conditions, which include inflammatory bowel disease, ankylosing spondylitis, and uveitic glaucoma, have no cure — but they can be managed through treatment. For more than a decade, consistent follow-up care, targeted therapies, and laboratory testing to monitor his illness and the efficacy of his treatment, have helped keep those conditions in check. And Billy, buoyed by the ongoing care he’s received at Mayo Clinic, continues to dream of the day he might take to the greens with the pros.
“I think after almost dying a couple of times, back when I was at my worst, I just have such appreciation for each day,” Billy says. “I am an eternal optimist. People often discover that I am hard-pressed to find the negative. I am always thinking it is probably going to be OK — that’s just ingrained in me because I am a hope-filled person.”
Billy’s ability to view the world through a lens of hope is grounded in the confidence that he is receiving the best care in the world.
“Laboratory test results are a great affirmation,” says Billy. “It takes a lot for me to want to slow down, but if I do experience that, or I think my disease is flaring, then I have the confidence that the laboratory is getting that information. With the test confirmation we know where to go with me.”
It wasn’t always clear to Billy where his condition might take him. In his early 20s, while pursuing his golfing dreams, he was diagnosed with sacroiliitis, a condition in which one or both pelvic sacroiliac joints become inflamed. A few years later, in 2003 while in graduate school, Billy experienced a severe case of ulcerative colitis. The flare destroyed his colon, which was surgically removed. As a result, Billy was given an ileostomy and an external bag to collect solid waste.
The event knocked Billy off his life’s course and compelled him and his wife Meredith to move to her hometown of Winter Park, Florida, to navigate a way forward. In Florida, Billy contacted Mayo Clinic’s Jacksonville campus and was introduced to gastroenterologist John Cangemi, M.D.
Dr. Cangemi, who is now retired, managed Billy’s care for more than 15 years. In that time, Billy underwent a surgical procedure known as ileoanal anastomosis, or J-pouch surgery, which created a new internal system for eliminating solid waste from his body. Performed in April 2004, the surgery involved reshaping the lower portion of the small intestine, called the ileum, into a j-shaped pouch and attaching it to the end of the rectum.
In addition to receiving the life-changing operation, which allowed Billy to resume his golf game, under Dr. Cangemi’s care Billy received additional diagnoses for other autoimmune conditions. Among them were Crohn’s disease, ankylosing spondylitis, and uveitis, which led to glaucoma and required the implantation of an Ahmed glaucoma valve to release the pressure and restore his vision.
Symptom cascades like the one Billy experienced are not unusual for patients with autoimmune disease. And in his case, the inflammatory conditions are under the disease umbrella of spondyloarthropathies, explains Mayo Clinic rheumatologist Ronald Butendieck Jr., M.D.
"IT AFFECTS HIM SYSTEMICALLY," DR. BUTENDIECK SAYS. "THE GOAL OF TREATMENT IS TO FIND A MEDICATION THAT WOULD ADDRESS EACH AND EVERY ONE OF THOSE PARTICULAR MANIFESTATIONS."
In July 2011, Billy's team prescribed him adalimumab, a biologic therapy injected subcutaneously twice monthly. Adalimumab seeks out the molecule that promotes the inflammatory process and deactivates it. The biologics treatment was a game changer for Billy. His health stabilized, and after a 10-year absence from the golf circuit, he began hitting balls again. More importantly, Billy refocused his energy on improving his nutrition and exercise, and on returning to a healthy weight.
“He really did recapture control over his own health and had improved his quality of life enough where he could get back into living,” says nurse practitioner Donna Shelton, who helps manage Billy’s care.
Treatments like adalimumab are extremely effective at treating conditions like Billy’s; however, they must be monitored.
“If you are going to be on these medications, you need to have the laboratory follow-up, and also the evaluation before you go on the medication,” Shelton says. “That piece is critical.”
Blood testing before initiating therapy helps the provider rule out latent infection and obtain a baseline measurement of a patient’s liver function. The liver metabolizes the medications.
Billy began medication injections every two weeks and faithfully attended his Mayo Clinic appointments. As part of his follow-up care, Billy received routine Mayo Clinic Laboratories testing to measure inflammatory markers in his body. Calprotectin (Mayo ID: CALPR) testing evaluates for gastrointestinal inflammation, and C-reactive protein testing (Mayo ID: CRP) looks for inflammatory markers in the blood.
“As long as patients are stable, they’ll continue on those routine labs, and barring any abnormalities or changes in their status, six to 12 months is usually standard,” Shelton says.
For the past several years, Billy’s health has remained stable. He worked on golf and dabbled in the amateur circuit. But in the summer of 2020, things began to shift.
“I wasn’t feeling up to par and so I reached out to Donna, and through the lab tests we found the C-reactive was high and indicating that the inflammatory cells in my body were getting more active than they should be.”
When patients start losing their response to medication, or develop antibodies to the medication, which is known as immunogenicity, laboratory testing (Mayo ID: ADALX) to measure the drug’s concentration, or trough level, in the blood can help quantify that loss. “We checked Billy’s trough level and it was low,” Shelton says. “It was 4.6 and we aim for a level around 8.”
As a result, Billy was directed to increase his medication dosing to once a week. Four months after that change, repeat trough concentration testing showed Billy’s levels had risen to 15.
“LABORATORY TESTING GIVES US OBJECTIVE INFORMATION ON HOW THE MEDICINE IS WORKING AND HOW PATIENTS ARE TOLERATING IT,” SHELTON SAYS. “IF WE SEE THERE'S STILL EVIDENCE OF ONGOING INFLAMMATION, EVEN IF THEY'RE FEELING WELL, IT MAY PROMPT US TO REINVESTIGATE THEIR DISEASE AND NOT WAIT FOR THEM TO HAVE SYMPTOMS.”
For Billy, having access to reliable information about his body’s response to treatment is important to help him continue moving in the right direction. “I’ve learned with inflammatory bowel disease how all patients are so uniquely different,” Billy says. “I went through it for so many years and it was a tough go. And I want to do everything I can to stay ahead of it because I know where it can go.”
Billy still imagines a future filled with golf and understands that focusing on the present is key to getting to the future.
“Having played competitive golf, the best rounds are where you’re out there and competing in the moment,” Billy says. “If I’m golfing and at hole 7, I’m not thinking about hole 4 or 12. I’m focused on the current shot. Golf has been so helpful as a tool to help me deal with my condition one day at a time.”