Conquering Crohn’s: Living with Crohn’s Disease

DAUPHIN COUNTY, Pa. — Janelle and Andrew are at different starting points in their lives: Janelle and her husband just purchased their first home together, Andrew is just seven years old, practically starting life. Both of them live with Crohn’s Disease.

Janelle says it’s a constant battle. “I can feel perfectly fine one time, and then an hour later be very very sick,” she says.

Now 26 years old, Janelle was diagnosed at the age of 17.

“At the end of my junior year of high school, I just woke up in so much pain that it was time to go to the ER, and that’s when they ran additional tests.”

She’d suffered nearly three years of symptoms before her diagnosis.

“A lot of weight loss, nausea, running to the bathroom, not eating because i just had so much stomach pain,” she describes.

After her diagnosis, Janelle went through years of trial and error with treatments, trying to find one that worked for her. She didn’t have success with oral medications or steroids, IV treatments gave her drug-induced lupus, and her symptoms came back after two years of self-injections.

“I actually ended up in the hospital again in 2014,” Janelle explains, “and had to have over two feet of my small intestine removed and about six millimeters of my colon removed. I knew it was the best thing for me, it saved my life, but at the same time i had to deal with something that was completely different than a ‘normal person.'”

Janelle is now in remission. Most days, her inflammation is under control and she doesn’t suffer any symptoms; however, flares still happen.

“I still have my days where I’m not feeling well. I will go on more of a strict diet when i have those days to calm things down,” Janelle says. “There are limitations that I know I have and that I just have to accept it.”

That’s a lesson much more difficult to learn as a child. Andrew was diagnosed with Crohn’s Disease at just 5-years-old.

“Sometimes it can be very painful to the side of your stomach,” he explains.

At age five, Andrew was hospitalized with a staph infection. During that round of treatment, he developed C. difficile infection, a drug-induced form of colitis. He suffered the infection four times before doctors diagnosed him with Crohn’s Disease.

“It’s definitely a tough pill to swallow,” says Andrew’s father, John. “It’s not life-threatening, but on the flip side there’s no cure.”

As a parent, John says the diagnosis was devastating.

“You wish you could say ‘why not me?'”

Andrew’s family, though, is taking the diagnosis head-on, following Andrew’s lead.

“He definitely has no fear. I often say he needs to live in a bubble,” John says. “He scares me at times.”

Andrew puts it simply. “I just deal with it,” he says. After all — he’s a goalie.

Andrew plays ice hockey and says the pucks are his favorite part of a game. He even takes his goalie equipment to Johns Hopkins, where he undergoes IV treatments.

“Whenever they put the needle in it hurts, just for two seconds, and then it’s in,” Andrew says, describing his treatments in Baltimore. “You can just feel it coming in and it just feels kind of cold, so you can relax.”

While he’s endured more than most kids his age, Andrew has not had to undergo surgery for his Crohn’s Disease, something nearly three-quarters of patients, like Janelle, have had to endure.

“We know people who have had surgery, that have had sections of their intestines removed,” says Andrew’s father, “and because he’s diagnosed so young, we wonder if it’s inevitable and at what point does that happen?”

Andrew and Janelle have more than enough to tackle every day, but both are embracing new purpose: raising awareness about inflammatory bowel disorders, in the hopes of helping other people like them.

“Crohn’s is a part of me and who I am, and I accept that,” says Janelle. “People need to be aware of this because it’s growing. There are medications out there, and they’re always adapting and finding new things that work even better.”

And finding a cure is the ultimate goal.


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