Disney’s own treatment started with anti-inflammatory pills, an immune stabilizer pill and prednisone. The prednisone helped him gain weight back, but did not put him in remission. Remicade infusions soon followed. The Remicade seemed to help keep him stable for about a year, but the blood work began to show that it was no longer working for him. He went back on prednisone for a few months without seeing good results. This is when his treatment became very difficult.
Disney was put on a NG feeding tube with a pump. He had to insert a new tube through his nose into his stomach every week. The pumping process lasted 8 to 10 hours per day. He could only eat 100 calories of actual food each day. This treatment worked for a while, but once again, blood work showed it was failing him. Disney went back to taking prednisone for a few months. His current treatment is a bi-monthly Entyvio infusion that he has been on almost a year. So far, the Entyvio is keeping his blood work numbers at an okay level but still not where he should be. Sadly, he has been told by his doctors that this may be the best that he can be for right now.
The original story by Nicholas Wilkinson appeared in the Daily Nebraskan.
Robbie Kocks, a criminal justice major at UNL from Lawrenceville, Ga., and member of the UNL Gymnastics team, knew something was wrong when he dropped 20 pounds. “I was just getting really bad stomach cramps after eating. Eating anything,” Robbie said. “I finally went to a doctor about it, he sent me to see a gastroenterologist, and they told me I had Crohn’s disease.”
Crohn’s disease is diagnosed in about 1 in 10,000 people every year and affects each person differently. “I get these flare ups where my body just aches and it feels like you have the flu and a heavy body,” Robbie said. “Everything just hurts. I always wondered why I was so tired all the time, and I always associated it with my high intensity, but it wasn’t.” Robbie is on a medication called Remicade that he said helps tremendously with his symptoms so he can practice pretty efficiently.
Robbie decided long before his diagnosis that he had other plans for the next few years and the rest of his life. He’s a person with Crohn’s disease, not Crohn’s disease. “I swore to myself that it would not get in the way of my gymnastics and it would not hinder me at all,” Robbie said. “In my abilities, or my mindset, or in my life.”
Kristi and Illum’s Story
Despite being diagnosed with a severe case of Crohn’s disease in her late 20’s and needing to have a foot of her intestine removed, Kristi admitted she wasn’t involved with the Crohn’s and Colitis Foundation of America (CCFA) until her son, Ilum, was diagnosed at the age of 11. Kristi said, “I feel fortunate since I have never had a serious reoccurrence and only have mild symptoms at times. I think more about helping the kids who have it, especially since my son has been diagnosed.”
Several years ago, after Ilum couldn’t shake what they initially thought was the stomach flu, they went to their pediatrician. He connected Ilum’s symptoms with his mom’s history pretty quickly and ordered a blood test for Crohn’s. A colonoscopy found that Ilum’s intestines and stomach were inflamed. He was immediately put on a steroid and then a preventive drug and has had only one flare up that required steroids again. At this point, he is considered to be in remission.
Mother and son now share a goal to raise awareness for Crohn’s. One way they do that is by helping out with and participating in the annual “Take Steps” CCFA walk in Lincoln. Kristi has co-chaired the event and Ilum was an Honored Hero. Ilum has also attended Camp Oasis – a camp just for kids with Crohn’s and Colitis. He has been awarded with the “Outstanding Camper” award and would now like to attend leadership training and be a counselor at the camp.
Shannon had heard of Crohn’s disease but knew nothing about it before her friend Katarina was diagnosed with it in 2010. Unfortunately, in 2011, Kat passed away due to complications from her Crohn’s disease.
Then in 2012, Shannon began having really bad abdominal pain and was having to make frequent trips to the bathroom. This went on for three weeks before she went in to see someone, and her physician recommended getting a colonoscopy. She was then diagnosed with Crohn’s disease. “The only thing running through my mind was Kat—images of her in the hospital and being sick. I was so scared and unsure of what my fate would be with this disease.”
Luckily, Shannon had the most amazing support system to rely on, including her family and friends and Kat’s family. “They pushed me to get better and to not give up hope that I could live with Crohn’s disease. I also had amazing support from my gastroenterologist.”
Shannon is currently in remission. She is back to working in a daycare, and she is also a full-time student at UNL. “Having Crohn’s disease has completely changed my life, and I am so thankful for that. It has taught me to enjoy every day and to enjoy the small things in life. I have Crohn’s disease, Crohn’s disease does not have me!”