After Crohn’s battle, man takes on lake

40-year-old swims to raise awareness

6/7/2013
BY LORENZO LIGATO
BLADE STAFF WRITER
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    Map of the path taken by Ryan Stevens.

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  • Ryan Stevens of Maumee uses the Wolf Creek YMCA in Springfield Township to prepare to swim across the Great Lakes to raise awareness for Crohn’s disease, with which he was diagnosed in 2009.
    Ryan Stevens of Maumee uses the Wolf Creek YMCA in Springfield Township to prepare to swim across the Great Lakes to raise awareness for Crohn’s disease, with which he was diagnosed in 2009.

    Four years ago, Ryan Stevens would spend a good part of his day on his couch, unable to do anything but watch television.

    Today, the 40-year-old Maumee resident is training to complete a 24.3-mile swim across Lake Erie.

    His former couch-potato lifestyle was not sheer laziness. When he was 36, Mr. Stevens was diagnosed with Crohn’s disease, an acute form of inflammatory bowel disease.

    Named for Dr. Burrill Crohn, who first described it in 1932, it’s a disease in which the immune system attacks healthy tissues in the intestines. The cause is unknown. Symptoms include stomach pain, diarrhea, bleeding, and weight loss.

    “The way I like to describe it is, my immune system is a jerk,” Mr. Stevens said. “The disease wakes up and your immune system attacks your own body, for no reason.”

    When symptoms flared up on Christmas morning, 2008, he didn’t know the cause of the stomach pain he was experiencing.

    “I just assumed I ate something funny,” he said. “I went to see my doctor, and he told me to eat yogurt.”

    Three months later, the yogurt had not worked any magic.

    Map of the path taken by Ryan Stevens.
    Map of the path taken by Ryan Stevens.

    Mr. Stevens had lost more than 15 pounds. His symptoms kept flaring up.

    After receiving his diagnosis following a colonoscopy in March, 2009, Mr. Stevens began a regimen of antibiotics and steroids to keep his immune system in check.

    He had little success. Sometimes, he would be laid up with high fevers. The disease would cause tiny tears, known as fissures, which could lead to persistent bleeding.

    “Medications give a false sense of security, but I wasn’t getting better,” Mr. Stevens noted.

    It took the full removal of his colon for Mr. Stevens to find relief from a disease that, he said, was turning him into a “walking dead.”

    In March, 2011, when he weighed a mere 120 pounds, he underwent a single-port total colectomy at the Cleveland Clinic.

    Unlike traditional colon surgeries that require a 15-inch incision over the abdomen, a single-port colectomy is minimally invasive and leaves little to no scarring.

    The surgery is performed through a small incision near the patient’s navel, from which the colon is fully removed, said Dr. Meagan Costedio, who performed the surgery.

    “This procedure is still very rare around the country,” Dr. Costedio said.

    For Mr. Stevens, the surgery’s benefits were nearly immediate. In only the first week at home, he gained 11 pounds. After a second surgery to sew the edges of his small bowel and rectum together, Mr. Stevens could finally breathe again — and leave his couch.

    “I’m back to my normal life, except I don’t have a colon now,” Mr. Stevens said.

    Mr. Stevens wanted to raise awareness for fellow “Crohnies,” as he calls victims of the disease. According to the Crohn’s & Colitis Foundation of America, there are about 700,000 nationally.

    In September, 2012, Mr. Stevens created a Web site to recount his experiences.

    “I’m one of the lucky ones,” he said. “Someone reached out to me on Twitter who had to go through 33 surgeries.”

    Mr. Stevens took his advocacy efforts a step further when he announced last fall that he would swim across Lake Erie to raise money for Crohn’s research. Proceeds will go to the Cleveland Clinic, he said.

    The lake swim, scheduled for July 27, is no easy feat. Of 63 attempts since 1975, only 14 swimmers have successfully made the crossing from Long Point, Ontario, to Freeport Beach in North East, Pa.

    Mr. Stevens said he has been training intensely and believes he can finish in less than 12 hours.

    “I learned to swim before I learned to walk,” said Mr. Stevens, who swam in college for the University of Toledo and Indian River State College in Fort Pierce, Fla.

    His greatest challenge lies ahead, though: Tests in March showed his Crohn’s disease had returned, this time in his small bowel.

    Crohn’s can recur in patients who have had surgery to eliminate it, Dr. Costedio said.

    Mr. Stevens said he has no intention to give up on the lake swim.

    “The more he keeps his body in shape, the better off [he is],” Dr. Costedio said.

    Mr. Stevens’ plans have drawn attention from more than 700 Twitter followers.

    Previous Lake Erie swimmers also have taken notice, including Dr. Eric Mizuba of Erie, Pa., who made the crossing in July, 2012.

    He has offered some tips to Mr. Stevens, and applauded him as a role model for Crohn’s sufferers.

    “For Ryan to be able to do what he’s doing, that is nothing short of miraculous,” Dr. Mizuba said.

    Contact Lorenzo Ligato at: lligato@theblade.com or 419-724-6091.