IBDanswers

Stephani Edington
Kansas State Collegian

Imagine waking up with a blinding pain in your abdomen that is so bad, you can't even get out of bed. You lay there, praying for it to go away, but there is no release.

Cheryl Mueller, freshman in elementary education, has days like these. Mueller has a chronic illness called Crohn's disease.

"Crohn's disease affects the intestinal region," she said. "They have no idea what the cause is, and they have no idea how to fix it or cure it."

Crohn's is an inflammatory bowel disease, said Sherri Lee, Registered Nurse at the Cotton O'Neil Clinic in Topeka.

"It's an abnormal immune response," she said. "It is thought that it can be inherited, but there's no clear-cut causal factor -- it's an auto-immune response, like when you have hay fever."

The symptoms are very uncomfortable, Lee said.

"The symptoms can include loose, watery stool, lower abdominal pain, cramping, fever and rectal bleeding," she said. "The treatment is an auto-immune suppressant. The medicines we use help to suppress the inflammatory response of the disease, which in turn relieves the symptoms. In extreme cases, patients have to have part of the bowel removed if it's diseased, which is called an anastomosis."

Crohn's is a lifelong disease and those who have it must try to keep it from flaring up, Lee said.

"Stress may cause a flare-up, but, for the most part, patients can live a normal life," she said.

Although she has a chronic illness, Mueller said it does not effect her on a daily basis.

"I can wake up most mornings and feel fine," she said. "There will be some mornings, though, where I can't get out of bed. I just lay there holding my stomach because I'm in so much pain."

There are a lot of students with chronic illnesses at K-State, said Gretchen Holden, director of disability support services.

"Students with chronic health impairments are covered by the Americans with Disabilities Act, which was passed in 1990," she said. "Students come to our office to talk about what accommodations would be appropriate for them. If there is a student with rheumatoid arthritis that can't climb stairs, we can move class to a place with an elevator."

Other accommodations have been made, Holden said.

"We had a student with cystic fibrosis who couldn't take evening tests, so we gave her those tests here in the afternoon," she said "We have helped a student with a sleep disorder to take afternoon classes."

The Americans with Disabilities Act wants universities to work on a case-by-case basis, Holden said.

"A student can come in and we can talk and figure out what would be useful for them," she said. "We encourage students to let teachers know and encourage a flexible attendance policy, if it's feasible."

Disability support services has helped students with Crohn's disease before, Holden said.

"We have written letters to ask instructor to help students to be seated by a door so that if they need to leave, they could do so easily," she said.

Mueller said she had a lot of problems adjusting when she started college.

"When I came to K-State, I had a lot of problems with the Derb food," she said. "I'm not used to eating all that fatty food that's not good for me. It took a lot of getting used to."

Mueller said her diet is restricted by her disease.

"I can't eat any uncooked vegetables, any fruit that has a lot of acid in it or fatty foods," she said. "I have to be careful with anything with spice in it, no matter what it is. A lot of Chinese food and Mexican food, I can't eat at all. Some dairy products are OK, and some I can't have."

Her immune system is affected, also, Mueller said.

"When I get sick, I get really sick because my immune system is not that of a normal person's," she said. "I'm always fighting the disease. It's always going on -- my blood cells are always fighting that, so when I get sick, it's like I have two battles going on in my body."

Mueller has notified her teachers about her disease.

"Most of them know about it," she said. "A lot of them don't know what it is, so they don't know what to expect. I told them it won't be an everyday occurrence, but there might be times where I just can't make it to class, and to give me a little leeway.

Mueller found out she had Crohn's during her sophomore year of high school.

"When I first got diagnosed, I was really kind of embarrassed, because intestines are not something you want to talk about with people," she said. "I didn't tell anybody what was really going on except for a few of my best friends, and for a while there, I kept it so quiet that no one had any idea what was going on. Now I've just gotten used to it."

Mueller said she missed her sophomore year of high school because she was being diagnosed.

"I was sick a lot," she said. "My friends thought I was anorexic because I didn't eat as much as I used to, because every time I ate I felt sick, and would usually end up throwing it up. But that wasn't the case -- I love food, and I tried to eat all the time."

After a while, Mueller's friends expressed their concerns to her parents, who took her to the doctor, who thought she had the stomach flu.

"That went on and on -- I went through more and more testing, and they finally figured out it was Crohn's. By that time, I had lost, like, 30 pounds."

All of this time, Mueller was missing more and more school.

"My sophomore year of high school, I averaged 16 days of school one semester," she said. "I was at home, and I couldn't get up, or I had blood tests or other tests, or I was on a liquid diet."

When she did make it to school, she was in a daze, Mueller said.

"I would have times where I was so out of it, I would walk into the wrong classroom and just stand there looking around and have no idea what was going on," she said. "I don't remember any classes I took. The only thing that kept me in school was that I was on the honor roll. I studied in all my free time that I could at my house."

The medicine also was a problem, Mueller said.

"Once I got diagnosed it wasn't over and done with," she said. "I still had to get it under control. I had to take so many steroids that my eyes would get inflamed. I couldn't even close my eyes one night, so I had to stay up all night because it was so painful. My joints swelled up to bigger than softball size and filled with liquid, and they are still messed up."

Mueller enjoys playing sports Ð she plays flag football on an intramural team.

"For a while I had to stop playing sports because it got so bad," she said. "All the medicine I take messed up my joints, so I have to be careful."

Mueller said, in addition to the anti-inflammatory medicine she takes for the disease, she also takes vitamins and minerals.

"Because I can't eat certain things, I'm missing out on a lot of vitamins and minerals," she said.

Mueller said her doctors told her not to drink alcohol.

"The medicine I take is really bad for my liver," she said. "They say don't do it, but if I do, to drink small amounts."

Mueller said the disease will affect her for the rest of her life.

"It could affect having children," she said. "It could prevent the child from getting nutrients. Also, it's not proven yet, but there's a chance I could give it to my kids, so there is some genetic link. It will probably shorten my life, also."

Because she has a chronic illness, Mueller said she has to stay positive.

"By seeing that other people have it, it helps me," she said. "Most days I'm normal, but if I have a bad week, I have a really bad week. I just don't dwell on it."