Learning to Accept a Long-Term Illness
Alex Wenke went into the hospital the day after Thanksgiving last year. Soon after, he was diagnosed with a condition he and his family knew nothing about: Crohn's disease. This life-long illness is a form of inflammatory bowel disease (IBD) primarily affecting Alex's large intestine.
Since then, Alex, 14, has been learning how to live with the condition. Parents Mike and Tina, and siblings Sam, 11, and Sarah, 8, are adjusting to the diagnosis as well. Below are their tips on living with IBD.
Take One Day At a Time
After his hospitalization, Alex began several medications to treat his Crohn's, and he was recovering from anemia due to blood loss. He also suffered two bouts of the flu during that time. Dealing with all of that at once was intimidating for the Wenkes. "We decided to take it one step at a time," Tina says. "It takes patience."
Keep It Simple
The Wenkes were overwhelmed with the endless web sites about IBD they found after Alex was first diagnosed. The family shut off the computer and instead decided to focus on the information they received from Alex's doctor at Cincinnati Children's. "We learned we didn't need all of the information at once," Mike says.
Communicate Openly
Mike and Tina check in with Alex on a daily basis to see how he feels and to make sure he's taken his medications. Recognizing Alex's need for independence, they are reaching a point where Alex is responsible for taking his own medications. They feel keeping the communication channels open will help get them there.
Equally important, Tina says, is to keep Alex's school informed. The Wenkes gave the school information about Alex's condition they received from Cincinnati Children's. In return, they've found the school staff to be flexible and accommodating.
Stay Involved
The Wenkes have encouraged Alex to keep up with his extracurricular interests. In order to participate in activities such as paintball, Alex rests up the day before. The next day, he makes sure he eats right so he can keep his energy up. And his parents stay flexible with his schedule, allowing him to go to bed early if he needs to.
Alex Is Active In His Own Health Care
Alex talks with his doctor himself, rather than relying on his parents to do so. And he chose on his own to change his diet to one that works best for his illness.
Practice Acceptance and Prayer
"Alex is accepting his illness as part of him," Mike says. "He's finding that he can live with it." Alex likes to call this "toughing it up." In addition, Alex has a good sense of humor about his condition, and he often jokes with his friends about it.
The Wenkes are especially appreciative of how Alex has been treated at Cincinnati Children's. "We've really relied on the excellent care of Alex's doctor and staff," Tina says. "They understand kids his age and what they are going through."
Alex and his family are still learning about IBD on a daily basis. Working together as a family has helped them through the tough times. And it's helped Alex "tough it up" so he can remain an active teenager, playing basketball and paintball and taking care of his pet reptiles.
