Teen Steps Up to the Plate to Meet Challenges of Crohn’s Disease

Keegan Lessard refuses to let chronic pain stand in his way

Keegan Lessard continuesto play baseball despite being in chronic pain from Crohn’s Disease. He is active in the community telling hisstory to raise awareness and find a cure.

by Mara Soloway

First published February 2016 in Lifestyles & Homes Magazine

If his pain level when he wakes is no higher than seven on his self-made scale of 10, Keegan Lessard feels he can tolerate going to school. If it’s higher than that, it usually makes sense for him to stay home to avoid further aggravating the Crohn’s Disease that keeps him in constant pain. Keegan feels he can live a fairly normal life when the number is a four or less.

The 16-year-old junior at Ridge Point High School, baseball player and soon-to-be Eagle Scout was diagnosed with Crohn’s at age 13. Fortunately, he told his parents right away when he first began feeling intense abdominal pain followed by bleeding when going to the bathroom. Parents Russ, an attorney, and Laura, a nurse practitioner, took him to the hospital. Like many others who get the disease, it was close to six months before Keegan was correctly diagnosed, even with a battery of tests including blood tests, a cat scan, pill camera studies, an endoscopy and a colonoscopy.

Since then, Keegan has had several long hospital stints beginning in the eighth grade and ultimately missed 40 days of school in his freshman year. He was last hospitalized in March 2015 for about two weeks.

The journey has taken Keegan – and his close-knit, supportive family – through a learning curve about an unknown disease, two surgeries and a search for the right drug regimen. It has also brought about acceptance. “Our son has Crohn’s Disease and we have to do everything we can to help him cope. My wife and I have gone through that process that any parent goes through when you find out your kid has a lifelong disease. You get to a point as a parent where you eventually accept it,” Russ explained.

“We are just glad that we still have him. We still consider ourselves blessed.”

According to the Crohn’s and Colitis Foundation of America (ccfa.org), many health care professionals aren’t familiar with this inflammatory bowel disease (IBD) that inflames and ulcerates the intestine, causing debilitating pain. The cause and cure are unknown; drugs used for treatment were created for other health problems to reduce pain and inflammation.

“When Keegan’s having a flare-up, he’s in the fetal position writhing in pain. When. he can’t bear it anymore, we take him to the hospital,” his dad said. During one hospital visit, after being on a morphine drip for seven days didn’t get his pain under control, pain specialists gave him Oxycontin. For his normal drug regimen, Keegan receives two shots each week – a Humira injection into his leg and then Methotrexate into his stomach. The Humira causes “terrible burning, like fire in your leg,” Keegan says. He regularly takes calcium supplements and occasionally Gabapentin, a pill for pain management. When he turns 18, experimental drug treatments are an option. The goal is to get him into remission.

With his current drug regimen, this is the first school year that he has attended classes pretty regularly. He’s also been able to continue to play baseball, his passion in life which started with T-Ball at age 4. He plays catcher for Ridge Point High School and for other club teams year-round whenever possible. This past summer, he played for the Texas Lightning, which was coached by Jesse Garcia.

“It’s tough to be an athlete with Crohn’s Disease because you’re pushing through the pain,” Keegan said. “It seems to get worse sometimes when you’re exerting yourself.” But he finds inspiration knowing that several professional athletes have the IBDs of Crohn’s or Ulcerative Colitis, such as former Jacksonville Jaguars quarterback David Garrard, former New England Patriots lineman Matt Light and Texas Rangers reliever Jake Diekman.

Long term, Keegan would like to find a job in some aspect of baseball, perhaps playing or as a scout or

coach. Due to his many years with the Boy Scouts, an outdoor job with Wildlife and Fisheries also sounds good. He will soon be finishing up his Eagle Scout project, with an eye toward a building project at Nora’s Home, which offers lodging for pre- and post-transplant patients and their families.

Having Crohn’s has defined some other aspects of his endeavors. He once told his mom, “I think God gave me Crohn’s to be a stronger person.” Laura said, “Keegan wants to tell his story in hopes of inspiring others, grow awareness about Crohn’s and help find a cure.”

Keegan was featured in The Invisible Disease, a film presented by Mercedes-Benz Dealers of Greater Houston and shown at the South Texas Chapter of CCFA’s winter ball that honored ABC13’s Women of Distinction. Visit abc13.com and search on Women of Distinction to see the segments.

The teen also was the Honored Hero of the 2015 Houston Take Steps Walk, another CCFA fundraiser. “I’m going to be a part of the walk however I can be the most help,” Keegan said. “I’ll always help support everyone who’s there.” The 2016 Houston Take Steps Walk is scheduled for May 14 at the Houston Zoo. To take part, contact Jennifer Small at jsmall@ccfa.org.

Keegan also plans to be involved with the CCFA’s annual Camp Oasis for children with IBDs. “I would like to be a counselor and offer my support to the younger kids.I don’t fully understand Crohn’s, so I imagine they’re scared to death,” he said.

Russ stresses the need to speak up if you have any of the warning signs, which include stomach pains, vomiting, rectal bleeding and diarrhea. “It’s very important when you’re having a lot of pain to let your parents or your doctor know.” The Lessards know a young man who went two years without telling his family about his symptoms and now wonders if he could have helped contain the disease if he had not been afraid to talk about it.

“What seems like a stomach ache one day could turn out to be a lifelong disease,” Keegan said. “It isn’t like what’s advertised on those commercials of people showing slight pain as they grab their stomach. It’s agonizing pain, and it makes it hard to function on a day-to-day to basis.”

“We need to find a cure, or we'll continue to have a large population, including children, with this debilitating disease,” Russ said.

More than 10,000 people in the Houston area of all ages suffer from Crohn’s Disease and Ulcerative Colitis. To learn more about the symptoms and to find other resources, visit ccfa.org or call the Houston office at 713-572-2232 or 800-785-2232.