How Expensive is Crohn's?

When my daughter, now 28, was growing up, I had one concern above all others. I was terrified that the cost of Crohn's disease would wipe us out and make it impossible to care for her properly.

I am just one of many patients with chronic conditions who actually worry more about the expense of the illness than its progression. When a friend or acquaintance gets a diagnosis of a serious medical condition, most people assume the patient's focus will be solely on getting healthier. Not true.

The financial aspects of inflammatory bowel disease (IBD) spread across the entire life of the patient and his or her family. According to the Crohn's Colitis Foundation of America (CCFA), around 1.4 million patients in the United States suffer from IBD, which includes both Crohn's disease and Ulcerative colitis. Nearly 30,000 new individuals receive an IBD diagnosis every year.

CCFA states that a 1990 study reported medical costs of IBD in the U.S. at between $1.4 billion and $1.8 billion each year. About half the total went for surgery and inpatient care. The study estimated expenses of $0.4 billion to $0.8 billion annual for disability costs of the illness in terms of lost labor, resulting in a total yearly tab of between $1.8 billion and $2.6 billion.

Here are the categories that make Crohn's disease expensive for my family:

Food: A patient with active disease or a patient who has had a significant small bowel resection has a lot of food restrictions. I'm even sensitive to aging meat and have to avoid certain "discount" supermarkets as a result. While my husband and I regularly take advantage of coupons and rebates, I can't just grab what's on sale this week and toss it into the shopping cart. During periods when I need to supplement my diet, my food of choice is Ensure in the butter pecan flavor. It takes up to a six-pack a day at $8.99 plus tax.

Some patients exist for months on hyperalimentation (tube feeding) performed each night at home. The cost of the equipment and the special food required is impossible to predict because it depends on whether health insurance is paying part of the tab.