Girl on Fire: Crohn’s: Ranked right next to cancer

[As seen in Creston News Advertiser, September 5, 2013]

Over Labor Day weekend, I visited family in Minnesota. While I was there, I witnessed the slow deterioration of my aunt, Rhonda. My aunt has Crohn’s disease, and from what I’ve seen of the disease, I rank it right next to cancer in terms of the most hauntingly desolate things to witness.

Crohn’s disease is an inflammatory bowel disease that affects any part of the gastrointestinal tract in the body. The body’s immune system attacks the gastrointestinal tract, for one reason or another. The disease usually starts up when someone is between the ages of 15 and 30, and those who are younger tend to have the worst cases.

Crohn’s disease, like cancer, has no cure. It is believed to be caused by both environmental factors and a genetic predisposition. Siblings of someone with Crohn’s are 30 times more likely to develop the disease, and smokers are at higher risk.

My aunt, my dad’s sister, was diagnosed when she was 18, but she had had symptoms from when she was 13. My uncle Keith, my dad’s uncle, also has Crohn’s, but a slight case in comparison to my aunt’s.

I’ve always known my aunt to be more fragile than the normal person. She has very little muscle mass or fat, and has had many surgeries to remove diseased body parts. The average person has 20 feet of intestinal tract; my aunt has 18 inches.

Cancer and autoimmune diseases run in my family. I have relatives who had cancer and other relatives who have diseases such as multiple sclerosis and diabetes.

But, the worst case of cancer I’ve witnessed was my uncle, Larry. My uncle, a police officer, had mesothelioma in his abdomen. That kind of cancer is usually found in the lungs from asbestos, but doctors said it could have been caused from laying his radar gun across his stomach.

I remember going to visit family in Carroll one holiday when my uncle was visiting from Washington state. I walked into my aunt and uncle’s house. My uncle was sitting at the dining table, and the first thing that popped into my head was how similar he looked to a Jewish prisoner during the Holocaust. He had gone from a barrel-chested, jovial man to one with next to no muscle mass or fat, who was in pain sitting on a wooden chair with no cusion. My uncle died about seven years ago.

Crohn’s seems to me to be just as debilitating and heartbreaking. No one should have to watch a loved one suffer a disease that eats away at them. My aunt has suffered for about 40 years.

I’ve learned so much about the disease, different diets and management of pain, but what sticks with me the most is how to make someone with Crohn’s comfortable. With no meat on her bones, my aunt is always cold. She has very little intestines and therefore cannot eat foods for nutrients because they won’t digest. She does, however seldom, eat food for pleasure. Because of her lack of an intestinal tract, she was recently required to carry around a colostomy bag, which she keeps hidden to maintain her pride.

Parents should never have to bear witness to the death of a child, but I imagine my grandparents, before too long, will. There is only so much a person can take, only so much their body can suffer, before it gives out. I wish the disease never existed, but until that cure is found, I want to raise an awareness of its awesome, and awful, power.