Living with Crohn's Disease
“I thought, ‘This sounds like an old person movie.’ The surgeon saw the inflammation on my intestine and knew it right away,” said Angela, who was in high school at the time of her diagnosis.
According to the Crohn’s and Colitis Foundation of America, as many as 700,000 people in America may be affected by Crohn’s disease. Most people, like Angela, are diagnosed as young adults. The disease is equally prevalent in men and women.
Though she had not previously felt Crohn’s symptoms, they came on in a rush. She wasn’t able to keep food down, and her emotional health took a beating.
“I broke down completely,” she said. She stopped calling her friends, and began feeling depressed. “I was very emotional right away.”
According to an article in The Washington Times, her reaction is not unusual.
“Feelings of helplessness and a diminished sense of worth are common signs of depression, but also typical reactions to living with a chronic illness,” wrote Jacqueline Marshall, in her article “Crohn’s and depression: If it isn’t one end, it’s the other.”
There is no known cause for Crohn’s. Experts suggest that both diet and stress may exacerbate Crohn’s symptoms, but they are not the cause of the disease.
In a healthy person, the GI tract contains innocuous bacteria, which are typically protected from immune system attack. If someone has Crohn’s, the immune system mistakenly takes these harmless bacteria for a threat—producing inflammation. This inflammation can lead to ulceration, thickening of the intestinal wall, and soreness.
“It’s a very intense pain in my stomach. I just feel wiped. During an episode, I won’t move off of the couch because I just have no energy,” said Jacob Sodeman, a junior at the University of Washington who was diagnosed over a year ago.
Treatment options for Crohn’s patients vary, but one of the most common natural changes that someone can make is to go on a strict diet.
After Jacob went to a naturopath to be tested for nutritional aversions, he eliminated gluten, yeast, eggs, dairy, coffee, some vegetables, and seeds from his diet. All are difficult for his body to digest.
Jacob said that although gluten-free food has been popular in grocery stores and restaurants, these options often include other ingredients that he’s allergic to, like eggs or dairy. For this reason, they are typically not good alternatives in Jacob’s diet.
Prescribed medication is another important option. Angela goes in for Remicade infusions every eight weeks. She is hooked up to an IV for two to three hours. Afterward, she experiences fatigue.
The trade-off is that these infusions allow her to lead a fairly normal life.
“I’ve been able to pretty much ignore it. It’s been very well controlled,” said Angela.
Dining out can be difficult. “If I go to a nicer restaurant, I’ll call ahead and often be able to talk to the chef. Even when I do talk to a chef, they won’t always be knowledgeable. Fast food is out of the question,” said Jacob.
This isn’t the only lifestyle change that people with Crohn’s often have to make. Going abroad, where medicine is more difficult to acquire as an American citizen, requires a lot of planning. Health insurance is another concern.
“When I see bills that are $600 coming down to $10 because of our insurance, it makes me realize—I need to get a job with great benefits and a significant health care plan,” said Jacob.
Angela said that for her, Crohn’s was a wake up call.
“I thought sure that I was going to be one of those people that got out of high school and did a bunch of random jobs until I figured it out,” said Angela, “Instead, I got my Associate’s degree in paralegal studies. I dove right into working hard. It forced me to focus on what needed to happen in order to be okay, instead of experimenting like a lot of people do in their twenties.”
The Crohn’s and Colitis Association of America provides support for people diagnosed, as do other groups. Jacob said that conferences held by these groups are a source of hope.
“When I first found out about it, I wouldn’t have wanted any of that. But now I find that it helps to talk to people who have gone through the same issues,” said Jacob, “The conferences are uplifting because you know there are people who are actually working on your problem. We might not be stuck with this forever.”
After about a decade of living with Crohn’s disease, Angela is now no longer restricted from eating certain types of food. She said that flare-ups are rare, and she now thinks about her diagnosis with a lot more hope.
“It was a big, scary thing initially, but I wish someone could have told me that it didn’t have to be that way. It can be a livable disease for as terrible as it can get. It’s not bad all the time.”
Reach reporter Anita Dukart here.