Voices of Crohn’s Disease

Around the World With Crohn’s

Crohn’s hit Erron Maxey suddenly in 2009, about halfway into his 18-year career playing pro basketball abroad. A bout of food poisoning in Argentina seemed to trigger it.

“Actually, the whole team got food poisoning,” says Maxey, who also has 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 sores in his intestines and to remove fistulas -- tunnel-like passageways that reroute waste to the wrong places.

But it took 5 more years and several more surgeries before doctors officially diagnosed Maxey with Crohn’s.

That was a difficult time for Maxey. “I'd have upset stomach, chronic diarrhea, constant pain.”

“There’d be days when my energy level was really low, and, you know, I’d just go ahead and tell my coaching staff, ‘Hey, you know what? I ate something bad. I just don't have it today.’"

For a world traveler, getting the right treatment wasn’t always easy. It was often tough just to get his medication on the road.

Even when Maxey managed to get the drugs shipped to him, a complex web of laws and regulations in other countries sometimes barred him from taking delivery. Once, a customs official destroyed $4,500 worth of medication right in front of him.

After so many years with Crohn’s and numerous surgeries, including a major one at Emory University in Atlanta in 2018, Maxey says he has learned to be very clear with those closest to him about his needs.

“As graphic and as vulgar as it might be, you have to go through it so your loved ones know how to help take care of you. You can't sugarcoat it. Otherwise you're going to be in some serious trouble when you need help.”

But it’s also important, he says, to reassure those who care for you most.

“I mean, you're definitely nervous because you know that this stuff can take you out,” Maxey says. “But at the same time, hey, you know what? We're going to get through this. We're going to figure it out. You know, this isn't my first rodeo.”

For now, Maxey is waiting in limbo in Atlanta for the pandemic to pass. He hopes to play professional basketball for at least 2 more years.

Life Beyond Crohn’s

Natalie Hayden got her diagnosis in July 2005, 2 months after finishing her undergraduate degree at Marquette University in Milwaukee, WI.

“Up until that point, I was a picture of health.”

Symptoms started soon after graduation. “I knew something was wrong because any time I would eat or drink anything, I was in horrible pain. So I just stopped eating and lost about 15 pounds.”

Hayden says that besides excruciating abdominal pain, she had fevers of 105 and was so worn out that she couldn’t climb the stairs of her parents’ house.

Finally, her worried mother, a nurse, rushed Hayden to the hospital. It took the emergency room doctor only a physical exam and a CT scan to declare that Hayen had Crohn’s. She was admitted immediately.

Hayden says she has blocked out much of those first blurry days. She remembers the shock. She remembers a lot of tears.

“The hardest part of the diagnosis is dealing with the change to your identity. You think of this disease as a scarlet letter. You feel as though you're forever changed.”

Since her diagnosis 15 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 also has gained a new perspective.

Having Crohn’s “doesn't mean you can't follow your career aspirations. It doesn't mean you're not going to find love. It doesn't mean you can’t be a parent someday,” Hayden says. “You can do all those things with IBD. Your journey might just look a little bit different than your peers.'”

“The disease is a big part of you, it's not all of you,” she says.

Hayden has been in remission since she had 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-out flare, then you can save yourself a hospitalization.”

Something people don’t talk about enough, Hayden says, is the loneliness that can come with Crohn’s. Even supportive friends and family can’t quite grasp how it may shape every facet of your life.

The internet can offer a way to connect with others who truly understand.

“I just want people to know that they're not alone in their journey,” Hayden says. “We've all been there in your shoes, and we understand the severity of what you're going through.”

‘An Invisible Disease’

Vern Laine was extremely active and ice skated competitively while growing up in a small town in British Columbia, Canada. Then, in 1988, out of nowhere, he started getting terrible stomach pain that lasted for days at a time.

For months, Laine’s doctors suggested his symptoms were “just gas” or dismissed them as “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.”

The shock of that answer took a long time to sink in fully, Laine recalls. That started a 3-decade journey in managing the effects of Crohn’s, both physical and mental.

One of the hardest parts of the disease is the uncertainty. “You could be fine for months and then you're in the hospital. Sometimes it can hit in minutes.”

That, Laine says, is especially hard on relationships. “You can never be firm on plans -- ever!”

Another challenge is that many people simply don’t understand how ill Crohn’s can make a person.

“The disease is invisible. Just because I don’t look sick, does not mean I'm not suffering inside.”

Even after multiple surgeries, including one for an ostomy to remove his waste in a pouch, some people tell him, “You don’t look sick.”

That can take a psychological toll, which is something Laine wished he knew more about in the early years of his disease. At one point, he tried to take his own life.

“Many doctors treat the symptoms and the disease itself and forget about the mental stress. There's stigma and embarrassment behind having a bowel disease.”

Emotional support, whether from family and friends, group therapy, or one-on-one counseling, is vital to navigating life with Crohn’s, he says.

Over the years, Laine has turned to painting as his own art therapy.

“I can put paint to canvas and paint what I feel at that moment in time,” he writes on his blog.

“It's helped me tremendously to divert any pain or thoughts of depression. It can help take my mind off things and I can be in my own world.”

No Regrets: Choosing an Ostomy

Stephanie Hughes is a writer, triathlete, mom, and wife. Her journey with Crohn’s started when she was diagnosed in 1999 at 13 years old.

Though Hughes clearly has a sense of humor about her disease -- her blog is called The Stolen Colon -- there have been plenty of difficulties along the way.

One of the hardest moments, says Hughes, was in 2012, when she decided to have the surgery for a permanent ostomy, a hole in your abdomen that empties waste into a bag.

At the time, says Hughes, she was very sick and in and out of the hospital. Still, she knew that once she made the decision, there was no going back.

“I thought I was going to have to give up a lot in living with an ostomy, but the truth is that I gave up nothing and gained more than I had imagined.

“I have had an ostomy for over 8 years and it has dramatically increased my quality of life.”

For others struggling with the decision, she says, “Talk to your doctor and talk to someone who has lived with an ostomy. … I realize now that I had a flawed perspective on what living with an ostomy would be like prior to my surgery.”

There’s no doubt, says Hughes, that Crohn’s changed her life, but not always for the worse, she says.

“Living with a chronic illness will change your life. It will bring some of the biggest challenges you may ever face in your life, but it also brings the opportunity to find what’s important to you and to not let the lesser things in life distract you from those things that mean the most.

“It’s hard, and it’s OK to acknowledge that it’s hard … but I have found that experiencing the hard has helped me appreciate the good and the beautiful even more.”

WebMD Feature

Sources

SOURCES:

Erron Maxey.

Natalie Hayden.

Vern Laine.

Stephanie Hughes.

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