Shawn Steele has never been a beefy guy. But as his weight continued to plummet, he knew he had to do something. That’s why on Monday he and his wife, Becky, were at a Mayo Clinic campus in Rochester, Minn., hoping to find relief against a disease he can’t fight off. And he’s relying on his community of friends to help him do it.
The 33-year-old brewer and co-owner of False Idol Independent Brewers, which is a partner business to V-Grits, has had digestive tract issues most of his life, including five surgeries, and he knew something had to give. In recent months, he has fallen from 149 pounds to 132. He looks pale and gaunt, and he says he has difficulty mustering the energy for the rigorous physical aspect of brewing.
And it isn’t foreign to him. He has had such problems since he was a baby.
“About every five years they went in and cut out part of my small intestines,” he says. “It’s just kind of always been there.”
Diagnosed during childhood with diverticulitis, about a year and a half ago he received the diagnosis of Crohn’s, an incurable inflammatory bowel disease that causes inflammation of the digestive tract. This inflammation can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. When untreated, related complications and infections can become deadly.
What many don’t understand is that the chronicity of the disease is its most difficult feature. A Crohn’s patient may have periods of relative health between flare-ups. But then it will return suddenly and violently without warning. The cycle becomes a lifestyle for those who suffer it, and it can become a spiral.
“You wake up and say, ‘Well, this is going to be one of those days,’ ” Steele says, with half a laugh.
In Steele’s case, as with many who have Crohn’s, it often can be the worst of one symptom or another — intense and frequent diarrhea or painful and dangerous intestinal blockages. An increased risk of colorectal cancer is also a side-effect.
But living with the disease for so long also takes a different kind of toll, one that is emotional and mental. For one thing, it’s a relatively invisible disease.
For another, only another Crohn’s patient truly understands the kind of suffering it brings. It’s more than just a belly ache, yet it’s difficult to convey that to others, mostly because diagnoses are relatively rare at about 200,000 in America each year, according to Mayo Clinic statistics. And so, it can begin to feel like a solo fight, a lonely and never-ending struggle against something no one else can see or understand.
“It’s harder to address” than other diseases, Steele says. “It’s embarrassing.”
Crohn’s patients often get shifted from doctor to doctor as they seek help. Steele says this offers its own challenges, as he hears the same suggestions repeatedly. And because his nature is to be polite to doctors and medical staff, he fears putting on a brave and smiling face may hinder his quest for answers and relief.
“That makes it harder for people to see you feel like crap,” he says.
And for someone like Steele, who also has battled clinical depression, it can become an unbearable weight that he says can turn into “a daily struggle to maintain a will to live.”
His answer at times? Humor. “I make it funny because it’s the only way I can communicate it so that it’s less embarrassing.”
Another aspect is the toll Crohn’s can take on day-to-day life. Steele is an independent, entrepreneurial-minded person who thrives on self-sufficiency. But his weight loss, relative lack of energy and growing malnutrition have meant that his wife, Becky, has had to help shoulder much of the load.
It’s been difficult for the couple in many ways. Becky recently finished graduate school and has a busy life of her own.
“The past 18 months of Shawn’s illness has been really hard on both of us,” she says, “especially since he was diagnosed as we were preparing to launch the brewery. For me, it’s meant that I needed to take on more responsibility as his health declined, which has been tough to juggle. From a more raw perspective, I’m stressed, exhausted and have sought my own therapy since March to learn how to better cope with these difficult circumstances.”
She says a big reason Steele wants to get better is so he can continue his dream of making beer, and that’s something she is dedicated to helping him with, starting with learning how to brew. In a way, she says, this determination has helped her as well.
“I feel more resilient, reliable, resourceful, and more determined than ever to help him find the right treatment,” she says.
“I don’t think I could overstate” the mental and physical support Becky has provided, Steele says, from keeping him moving forward to helping him lift sacks of grain during a brew day. “She’s incredible.”
It has been difficult to ask for outside help. The Mayo Clinic is the premier place for finding treatment for Crohn’s disease, but it’s expensive and insurance doesn’t help much. It wasn’t easy for Steele to sign off on launching a Kickstarter campaign to help offset the expenses that will be incurred, but he did. And that’s a sign he knows how serious the situation has become.
The Kickstarter has raised nearly $9,000 of the $10,000 goal, something Steele finds humbling and hopeful at the same time.
“That’s the thing,” he says of the people who have stepped up to help. “They are pulling me forward.”
It goes farther than hundreds of people making cash donations, however. Steele has been awestruck by the response from the brewing community, with numerous brewers offering to help by brewing batches of beer for False Idol while Steele recovers.
His planned stay at the Mayo Clinic is open-ended. It may simply be a single day of testing, or it may be extended as doctors and researchers come up with possible treatments. But despite the downward spiral emotionally, despite the depression and the physical toll Crohn’s disease has taken, Steele has embarked on one more step in a quest to find some normalcy and relative health.
“I think they’re looking forward to being able to help me,” he says of those he has spoken with at the Mayo Clinic, and he believes they can. “This isn’t their first rodeo.”