Autoimmune Disease No Handicap to Golfing Greatness

Gastroenterology Patient Stories

Autoimmune Disease No Handicap to Golfing Greatness

By
Joel Streed

July 15, 2019

Billy Dowell Jr. was working toward a goal of playing professional golf when his body betrayed him. He was beset by several autoimmune disorders that left him overwhelmed. With consistent, comprehensive support from his Mayo Clinic Care team, however, not only has Billy gotten his conditions under control, he's successfully returned to golfing.

It's a decade later than he'd hoped, but Billy Dowell Jr. is finally on par to chase his dream of playing professional golf.

Billy, who lives in Winter Park, Florida, learned to golf when he was just 4. He played his first tournament when he was 9. He golfed competitively throughout high school and college, and as a graduate student, he aspired to begin amateur and professional circuits. However, at the age of 27, a severe case of ulcerative colitis interrupted his plan.

Billy previously had been diagnosed with sacroil i itis, a condition in which one or both of the body's pelvic, sacroiliac joints becomes inflamed. But prior to graduate school, he'd never experienced gastrointestinal issues. When the colitis hit him in 2003, the condition destroyed his colon, and it had to be surgically removed. As a result, Billy was given an ileostomy and an external bag to collect solid waste.

Knocked off his life's course, Billy and his wife, Meredith, who had recently wed, moved to her hometown of Winter Park to try and carve a way forward. In Florida, Billy sought medical attention for his condition.

"We were in Florida and thought: 'Where do we go? What do we do?' I contacted Mayo Clinic, and Dr. John Cangemi was in agreement to see me," Billy says. "We don't have enough time for me to describe what Dr. John Cangemi has done to restore my life. Until you really lose your health, you never know what you have."

John Cangemi, M.D., in Gastroenterology and Hepatology, who has managed Billy's care for the past 15 years, refers to himself as the quarterback of Billy's interdisciplinary medical team. Through his years of care at Mayo, Billy's received additional diagnoses of other autoimmune conditions, including Crohn's disease and ankylosing spondylitis. More importantly, however, he's received integrated, holistic care that allowed him to chase his dream.

"It's taken me a long time," Billy says. "But I'm someone filled with much optimism and hope, and surrounding myself with the best people is part of my journey. I have been beyond blessed to have Mayo Clinic. I'm 44, and I still have my eyes on playing the PGA Senior Champions Tour."

A different strategy

There was a time when Billy all but gave up his dream of golfing professionally. "When my colon perforated, and I was in the ICU, and I woke up with an ileostomy bag, those were such very trying and challenging days," Billy says. "My ambition was to play professional golf someday, and at that point we didn't know if I'd ever be able to play golf again."

Arriving in Jacksonville at Mayo Clinic's Florida's campus and meeting Dr. Cangemi offered Billy a glimpse of a different fate. "When I started learning more about what was going on, I really developed an understanding that knowledge is power," Billy says. "The more you know about what you have helps you emotionally. That enabled me to start a transition of gaining some hope because I had confidence in my doctors."

"The idea of doing an internal pouch to prevent him from having to wear one on the outside was really a game changer for his life and his career."
John Cangemi, M.D.

At Billy's first appointment, Dr. Cangemi informed him about a surgical procedure known as ileoanal anastomosis that would create a new internal system for eliminating solid waste from his body. J-pouch surgery, offered at Mayo Clinic for approximately 40 years, creates a holding pouch for stool and allows patients to process waste more normally.

"The idea of doing an internal pouch to prevent him from having to wear one on the outside was really a game changer for his life and his career," Dr. Cangemi says. "To have an internal pouch and have total control of the pouch is an incredible treatment advance."

During Billy's procedure, which was performed in April 2004 by Mayo Clinic emeritus colorectal surgeon Philip Metzger, M.D., the lower portion of his small intestine, called the ileum, was made into a j-shaped pouch and attached to the end of the rectum. During the surgery, Billy's sphincter muscles were preserved, allowing him muscular control to hold in and release waste.

Because the J-pouch is smaller than the colon and holds less waste, Billy now needs to use the restroom more frequently than most people. But he's taken that in stride and learned to plan his meals and mealtimes to better align with bathroom breaks.

"Quite often, people are complimentary of my golf swing, and I think to myself, 'You only know the half of it,'" Billy says. "Teeing off and playing a round of golf — and having the confidence of controlling going to the bathroom — that took a lot of diligence and work to manage."

Multiple conditions, one medication

Billy's return to the greens wasn't immediate after his J-pouch operation. Over the years, he'd gained a significant amount of weight, which hampered his playing ability. Moreover, Billy was confronted by a continuing stream of setbacks linked to his malfunctioning immune system.

His ulcerative colitis was rediagnosed as Crohn's disease. He developed an eye inflammation in his left eye known as uveitis, which led to glaucoma. As a result of the pressure caused by the glaucoma, surgeons from Mayo's Department of Ophthalmology implanted an Ahmed glaucoma valve to release the pressure and restore his vision. Billy also developed lower back pain and was diagnosed ankylosing spondylitis, an inflammatory condition that can cause vertebrae in the spine to fuse.

This cascade of conditions isn't unusual for someone in Billy's situation, as it's common for a patient with one autoimmune disease to develop others. "It's just a disorder of the immune system as the central defect, which has many different expressions," Dr. Cangemi says.

Another member of Billy's care team, Ronald Butendieck Jr., M.D., a Mayo Clinic rheumatologist, explains that, in Billy's case, the inflammatory conditions are under the disease umbrella of spondyloarthropathies. "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."

"I say I'm in my second golfing life, which is a blessing."
Billy Dowell Jr.

In July 2011, Billy's team prescribed him a biologic treatment known as Humira. Taken twice-monthly via injections, Humira acts like an antibody and targets the molecule that promotes the inflammatory process. "Humira in the bloodstream seeks out the molecule, attaches to it and deactivates it," Dr. Cangemi says.

With the medication keeping his symptoms in check, Billy's golfing dreams re-emerged. "In 2014, after 10 years of not competing in golf, I started back hitting again," Billy says.

Billy signed up for an amateur golf tournament to be held in spring 2015 and began to train for the event. One day, while out with a friend hitting balls, his friend provided Billy, who at the time weighed about 280 pounds, a reality check.

"He told me that I was going to get laughed off the tee box with my weight," Billy says. That prompted a change. With the help of a nutritionist and a strength trainer, Billy modified his diet and began to exercise. He lost nearly 100 pounds, ultimately returning to his college weight.

"And May 1^st, 2015, I played my first tournament," Billy says. "I think Dr. Cangemi knew all along that golf was very pertinent to my life. Year after year of trying to get that right, I think he knew that eventually it would settle down, and it did. I say I'm in my second golfing life, which is a blessing."

Integrated team, ideal care

In addition to using Humira to treat his condition, Billy's care team can see that the thoughtfulness and dedication he applies to his fitness has had a significant impact on controlling his disease.

"He clearly has a passion for what he's doing. There is no doubt about it," Dr. Butendieck says. "For individuals who are self-motivated and keep working at it, that can be hugely beneficial. Staying healthy, eating right, doing the right exercises and stretches — it benefits him immensely. He is doing fantastic."

"Dealing with everything I'm dealing with and having the assurance from (my care team) that they're right there for me is unbelievable."
Billy Dowell Jr.

While self-care and a deepened understanding of his physiology have propelled Billy toward his dream, he says developing that understanding and implementing those self-care practices would have been impossible without his Mayo Clinic team.

"Quite often, I try to help others with inflammatory bowel disease, and frequently make the point that your health care team, your team of physicians and the network working together are so vital in dealing with autoimmune disease," Billy says. "I live near Orlando, and people there all the time say, 'You drive all the way to Jacksonville?' and I say, 'You better believe it.' There's no questioning that. Dealing with everything I'm dealing with and having the assurance from them that they're right there for me is unbelievable."

As a person with a complex medical condition that requires input from multiple specialties, being a Mayo Clinic patient puts Billy in an excellent position to receive all the care he needs in one place.

"Billy's a classic example of how the integrated health care system here works effectively," Dr. Cangemi says. "The beauty of it is we're all connected. From my central role as quarterback, he has access to the specialists, which are all under one roof on one record. And there's probably no other institution in the world that can do that."

HELPFUL LINKS: