Ryan Stevens - Crohn's Guy

A Competitive Swimmer Later Diagnosed With IBD, Ryan Is Committed to Advocacy

Ryan Stevens
Ryan Stevens discusses his life with Crohn's disease, and his swim across Lake Erie to raise awareness for himself and others living with the disease. Image © Janssen Pharmaceuticals

Most people look forward to the holiday season with some excitement, and while children are usually the focus of Christmas, even for adults it's a time for family and relaxation. But for Ryan Stevens, Christmas morning 2008 was not a time spent relaxing and enjoying time with family. It was the morning that symptoms started and would dictate his life for several years to come.

Ryan remembers his journey started that December 25th with diarrhea — not uncommon for adults, really, and maybe even more common during a time of celebrations and party foods.

However, the symptoms continued for about a week, and he then sought advice from a doctor. Initially, Ryan's diagnosis was a "stomach virus," and he was instructed to eat some yogurt and expect things to improve. But things did not improve over the next week, and at that point it was time for a referral to a gastroenterologist.

As is unfortunately common, Ryan was given a long wait to see a specialist because he was a new patient. It was mid-Feburary, almost two months since symptoms started, before he saw a gastroenterologist, and it was March before he was scheduled for a colonoscopy

A Diagnosis: Crohn's Disease

During the colonoscopy, Ryan's gastroenterologist saw signs of Crohn's disease, and the biopsy report confirmed it. More than two months after symptoms first started, Ryan received a diagnosis of Crohn's colitis. Crohn's colitis is actually just one type of Crohn's disease, and Crohn's disease is just one type of inflammatory bowel disease (IBD).

Crohn's colitis is so named because it means that the Crohn's disease is located in the colon (the large intestine). Crohn's disease can also appear in other parts of the digestive tract, which is why specialists often categorize the disease into one of several main subtypes.

Over the next two years, Ryan was given a series of different medical treatments, yet none of them had much of an effect on his symptoms.

He now describes those two dark years with a quote from his favorite movie, Aliens: "We're on an express elevator to hell. Going down!" In an effort to stop the continued deterioration and the rampant weight loss, Ryan scheduled an appointment to see a physician at the Cleveland Clinic, an IBD specialty center, that was a two hour drive away. It was there that doctors discovered and treated an infection with Clostridium difficile, which is a very worrying complication for anyone, and especially for IBD patients in particular.

Facing Major Surgery

By 2011, Ryan had come to the end of the line with drug treatments and the specialists were recommending a colectomy (the removal of the colon). "I had no quality of life," he remembers. "I was living on my couch. I was 120 pounds. I looked like the walking dead." Faced with no other viable options, he agreed to move forward with the surgery. "Let's do it," he told surgeons. "I put my life into their hands…I was too tired, and I had no fight left in me."

Ryan had his colectomy and ileostomy creation on March 3, 2011. Ryan's surgical team used state-of-the-art technology, and so the ileostomy was temporary. Surgeons were able to save his rectum and and anus, and on September 12, 2011, the ileostomy was reversed: the end of the small intestine was connected to the recum. For most patients, Crohn's disease has a pattern of flare-ups and remissions, and Ryan was no different. Even without his colon, the Crohn's returned and began to attack his small bowel. Once again his medical team started him on more medications, and the disease was again beaten back for a time. 

Swimming For A Cause

It was right around this time, in the summer of 2012 that a kernel of an idea began. Ryan was a competitive swimmer, having started his love affair with water at the local YMCA at 6 years old. He went on to swim through junior high and high school, and then competed for Indian River Community College in Fort Pierce, FL, a school that's won the National Championships for 41 years running. After finishing at Indian River, Ryan transferred to The University of Toledo, where he continued to compete and also earned his Bachelor's of English degree.

With such a long history of athleticism and competitive swimming, Ryan decided to undertake a swim to bring awareness to people who live with IBD. He started blogging and settled on a swim that has only been completed 16 times — a route across Lake Erie. In 2013 Ryan attempted the swim for the first time. He describes it as a "learning experience": the weather was horrible, and the lake temperature was around 60 degrees. Because a storm was on the way, the timetable was accelerated and the swim was moved up to an overnight swim: from midnight to noon the next day. Visibility was bad, and Ryan remembers that he wasn't comfortable and was not swimming with full strokes. He eventually had to abandon the swim because of the cold. 

The Second Swim Across Lake Erie: #XErie4IBD

In 2014, Ryan reached out to others who had completed the swim across Lake Erie, and began to plan again for August. The weather forecast was good, but as Ryan recalls, "the weatherman got it wrong." The water was choppy. The waves were high: 4 feet, in fact, and everyone who was on the support boat struggled with motion sickness. The water temperature was again cold, between 68 and 70 degrees. The wind coming from the northeast was pushing Ryan to the southwest, slowing him down.

Ryan was in the water for 12 hours and there was still 9 miles to go. The sun went down. The water got colder. At mile 22 Ryan's muscles failed him and he could go no further. It was pure adrenaline that got him to his support kayak, where he could be helped out of the water. He didn't want his crew to have to "fish him out of the water" in the cold and in the dark, and he decided it was the best decision to stop, just 2.8 miles short of his goal. He received treatment in the ER for presumed stage 1 hypothermia and ketosis.

How did Ryan feel after the swim? "I wasn't disappointed at all," he says. "I'm proud of what I attempted." The next day Ryan got word about how far his story had spread on social media. "That was just incredible." The response to his swim on Twitter and Facebook (hashtag #XErie4IBD) was nothing short of amazing.

Janssen Pharmaceuticals made a short film about Ryan's swim: Swimming With Courage and Crohn’s. Through the film, Ryan was able to reach an even wider audience, to educate and raise awareness about IBD and the difficulties facing people who live with Crohn's disease and ulcerative colitis.

What's Next For Ryan?

Will Ryan attempt Lake Erie again? He says it's not likely: he thinks perhaps that swim is not meant to be. He is, however, looking at the potential for doing a host of other activities to continue to raise awareness for IBD. Others may feel that he's done his part: but he still feels he has more to do.

Ryan runs a translation service from his home in Ohio, where he lives with his wife and son. Follow his blog at Adventures In Chronieland: IBD Survival Guide and on Twitter at Ryan_CrohnsGuy.

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