Living With Crohn’s

On a Monday morning in 2011, senior Mackenzie Hanna was awake at 5 a.m., unlike many of her classmates still comfortable in bed. Not because of unfinished homework or sports practice, but because she was suffering from extreme stomach pains and random urges to go to the bathroom.

Her symptoms began in the fall of her freshmen year and occurred throughout the day, every day. Until May of 2012,  Hanna and her parents did not know what was wrong.  And she never told anyone. Not even her closest friends knew. She was determined to continue to act like a “normal” high school student despite her medical issues.

“When I first started having symptoms I was just like, ‘I don’t want anyone to pity me or be like ‘oh poor you’,” Hanna said. “I just wanted to be normal. I would get up that early and go to school and act like I was totally fine.”

Laying on her bed in pain from her stomach, Hanna was unknowingly suffering from Crohn’s disease. Crohn’s Disease is a chronic disease that inflames bowels and causes the digestive system to reject food intake. According to the CCFA, it affects as many as 700,000 people in the United States but most commonly people between the ages of 15 and 35. The causes are not known, although diet and stress are thought to aggravate Crohn’s.

By winter of her freshman year, Hanna and her parents realized that something was seriously wrong. They went to Children’s Mercy Hospital to determine the cause of her recurring pains. After extensive testing she was diagnosed in May 2012. Treatment began immediately after her diagnosis but no medicine  prescribed seemed to have any effect on her body.

“I was trying all these different pills,” Hanna said. “I went from this regiment to this regiment and tried them all. I would take pills three times a day, probably a total of 25 pills every day and nothing worked.”

Because the doctors’ prescriptions were not working, Hanna and her family turned to alternate means of treatment. On top of the pills Mackenzie started visiting a homeopathic doctor once a week and even tried an extreme diet. She went gluten, dairy, soy and corn free but it didn’t help. It seemed as though Hanna was almost out of options.  One of the last things she had left to try was an infusion drug, Remicade.

“Sophomore year, before winter break, doctors at Children’s Mercy had been talking about Remicade, which is this infusion drug and its relatively new,” Hanna said. “But my mom was really scared of it because there are a lot of side effects.”

Remicade is a medicine often used when other drugs have not been effective but has the potential of causing many side effects such as loss of vision, seizures, and muscle weakness  .

“We were hesitant because Remicade is medicine that a person has high likelihood of building their own antibodies against,” Mackenzie’s mother Tanya said. “If you go off the medication you have a small chance it would or ever be effective again.”

With her mind set on Remicade, Mackenzie and Tanya went to the Mayo Clinic in Minneapolis, Minnesota to see specialists. Mackenzie’s family wanted to make sure Remicade was the best option for her.

Still secretly suffering, Mackenzie lied and told her friends they were going to visit their family friends that lived in Minnesota.

“Mackenzie and I were studying one night at my house when she told me never actually gone to see her friends but actually the to Mayo Clinic for Crohn’s,” friend Molly Gasperi said.  “I didn’t really know what to say but I was kind of mad that she didn’t tell me earlier. She’s one of my best friends so I would have wanted to be a kind of support system for her.”

Specialists at the Mayo Clinic confirmed that Hanna had Crohn’s disease and that Remicade was her only option.

“Remicade is an infusion which is a scary thing, said Hanna. “That’s a lot of drugs, medicine and bad stuff going into your body. It was our last option. We had done all these things and nothing was working.”

Infusion treatments of Remicade began right after they got back to Kansas City. Hanna and her family immediately saw the effects. After her first infusion her symptoms almost completely went away with no side effects.

Treatments occur every six weeks and take at least four hours.  Hanna is hooked up to IV through which the drugs drain into her body.

“It was a total miracle,” said Hanna. “I don’t say I never have symptoms because sometimes my stomach hurts and I’ll just have to lay down and stretch out but other  than that I’m totally fine.”

As time passed since she was first diagnosed, Hanna has become extremely open about the disease she suffers from.

“I just realized that God had put this struggle in my life for a reason,” Hanna said. “It was all in His plan so I might as well not hide it.”

She has no problem talking about it with her peers, in her KLife small group or recently on social media in an Instagram post.

“Looking back I was suffering by myself,” Hanna said. “My mom knew. I should have just told people and they would have understood and would have wanted to help.”