Crohn’s hit Erron Maxey suddenly in 2009, about halfway through his 18-year pro basketball career abroad. A bout of food poisoning in Argentina seemed to be the cause.
“Basically the whole team got food poisoning,” says Maxey, who has also played in Australia, Finland, China and other countries. But only his symptoms seemed to linger and worsen.
Later that year, Maxey had his first surgery in Uruguay to repair infected ulcers in his intestines and to remove fistulas – tunnel-like passageways that direct waste to the wrong places.
But it took another five years and several more surgeries before doctors officially diagnosed Maxey with Crohn’s.
That was a difficult time for Maxey. “I would have an upset stomach, chronic diarrhea and constant pain.”
“There were days where my energy level was really low, and you know, I just said to my coaching staff, ‘Hey, you know what?’ I ate something bad. I just don’t have it today.”
For a world traveler, it wasn’t always easy to get the right treatment. It was often difficult to get his medication on the way.
Even when Maxey was able to get the drugs shipped to him, a complex web of laws and regulations in other countries sometimes prevented him from receiving the drugs. Once, a customs officer destroyed $4,500 worth of medicine right before his eyes.
After so many years with Crohn’s disease and countless surgeries, including major surgery at Emory University in Atlanta in 2018, Maxey says he has learned to be very clear with those closest to him about his needs.
“No matter how poignant and vulgar it may be, you have to experience it so that your loved ones know how to care for you. You can’t sugarcoat it. Otherwise you will be in serious trouble when you need help.”
But it’s also important, he says, to reassure those who care about you most.
“I mean, you’re definitely nervous because you know this stuff can take you out,” Maxey says. “But at the same time, hey, you know what? We’ll get through this. We’re going to find out. You know, this isn’t my first rodeo.”
For now, Maxey is waiting in limbo in Atlanta for the pandemic to end. He hopes to play professional basketball for at least two more years.
Natalie Hayden was diagnosed in July 2005, two months after receiving her bachelor’s degree from Marquette University in Milwaukee, Wisconsin.
“Up until that point I was a picture of health.”
Symptoms started shortly after graduation. “I knew something was wrong because every time I ate or drank anything I was in terrible pain. So I just stopped eating and lost about 15 pounds.
Hayden says that in addition to excruciating stomach pains, she also had a fever and was so exhausted that she could no longer climb the stairs of her parents’ home.
Eventually, her worried mother, a nurse, rushed Hayden to the hospital. The emergency room doctor only needed a physical exam and a CT scan to determine that Hayen had Crohn’s disease. She was admitted immediately.
Hayden says she blocked out much of those first hazy days. She remembers the shock. She remembers many tears.
“The hardest part of the diagnosis is dealing with the change in your identity. You consider this disease as a scarlet letter. You feel like you’ve been changed forever.”
Since her diagnosis fifteen years ago, Hayden has built a career as a journalist and blogger and a rich family life with her husband, Bobby, and their two children, Reid and Sophia.
She has also gained a new perspective.
Having Crohn’s disease “doesn’t mean you can’t follow your career ambitions. It doesn’t mean you won’t find love. It doesn’t mean you can’t be a parent one day,” says Hayden. “You can do all those things with IBD. Your journey might look a little different than that of your peers.’”
“The disease is a big part of you, but not all of you,” she says.
Hayden has been in remission since her surgery in 2015. But she still has bad days.
“Don’t try to be a superhero and fight it at home. If you can nip it in the bud before it becomes a full-blown eruption, you can save yourself a hospital stay.”
Something people don’t talk about enough, Hayden says, is the loneliness that can come with Crohn’s disease. Even supportive friends and family can’t fully understand how this can shape every facet of your life.
The Internet can provide a way to connect with others who really understand.
“I just want people to know they are not alone in their journey,” says Hayden. “We have all been there in your shoes and we understand the severity of what you are going through.”
Vern Laine was extremely active and skated competitively while growing up in a small town in British Columbia, Canada. Then, out of nowhere, in 1988, he developed terrible stomach pains that lasted for days.
For months, Laine’s doctors suggested his symptoms were “just gas,” or dismissed them as being “in your head.”
When he finally got his diagnosis, the first thing Laine wanted to know was how to fix it.
“Unfortunately,” his doctor replied, “there is no cure.”
It took a long time for the shock of that answer to fully sink in, Laine remembers. This began a three-decade journey in managing the effects of Crohn’s disease, both physically and mentally.
One of the most difficult aspects of the disease is the uncertainty. “Things can go well for months and then you end up in the hospital. Sometimes it can strike within minutes.”
According to Laine, this is especially difficult for relationships. “You can never be firm about plans – ever!”
Another challenge is that many people simply don’t understand how sick Crohn’s disease can make someone.
“The disease is invisible. Just because I don’t look sick doesn’t mean I’m not suffering inside.”
Even after multiple surgeries, including one for an ostomy to remove his waste in a bag, some people tell him, “You don’t have to Look sick.”
That can take a psychological toll, something Laine wanted to know more about in the early years of his illness. At one point he tried to commit suicide.
“Many doctors treat the symptoms and the disease itself and forget about the mental stress. There is a stigma and shame behind having a bowel disease.”
Emotional support, whether from family and friends, group therapy or personal counseling, is essential for navigating life with Crohn’s disease, he says.
Over the years, Laine has started using painting as his own art therapy.
“I can put paint on canvas and paint what I feel at that moment,” he writes on his blog.
‘It has helped me immensely to distract from pain or depressive thoughts. It can help take my mind off things and I can be in my own world.”
Stephanie Hughes is a writer, triathlete, mother and wife. Her journey with Crohn’s disease began when she was diagnosed in 1999 at the age of 13.
Although Hughes clearly has a sense of humor about her illness – her blog is called The Stolen Colon – there have been many challenges along the way.
One of the most difficult moments, Hughes says, was in 2012, when she decided to have the surgery for a permanent stoma, a hole in your abdomen through which waste is emptied into a bag.
At the time, Hughes says, she was very sick and was in and out of the hospital. Still, she knew that once she made the decision, there was no going back.
“I thought I would have to give up a lot in life with a stoma, but the truth is that I have given up nothing and gained more than I expected.
“I have had a stoma for over 8 years and it has dramatically improved my quality of life.”
For others struggling with the decision, she says, “Talk to your doctor and talk to someone who has had an ostomy. … I now realize that I had a flawed perspective on what life with an ostomy would be like before my surgery.”
There’s no doubt, Hughes says, that Crohn changed her life, but not always for the worse, she says.
“Living with a chronic illness will change your life. It will present some of the biggest challenges you will ever face in your life, but it also offers the opportunity to discover what is important to you and not get distracted by the lesser things in life. the things that mean the most.
“It’s hard, and it’s okay to acknowledge that it’s hard… but I’ve found that experiencing the hard has helped me appreciate the good and the beautiful even more.”