Six years ago, I had not heard of Crohn's disease or ulcerative colitis. I lived in a world where I was blissfully unaware of inflammatory bowel diseases, where the debilitating symptoms didn't impact my life. Then I met my now-husband Dan, and everything changed.
Dan was diagnosed with Crohn's disease just two weeks after we started dating in 2007. Now, six years later, we have been through the gamut with the disease. He's been on three different medications, with one of them making it nearly impossible for him to function because of severe fatigue. Now, instead of taking oral medication, Dan receives an IV infusion every six weeks at the doctor's office. He's had three different gastroenterologists. He's been hospitalized for a post-colonoscopy infection and an intestinal blockage. Most recently, he had part of his small intestines removed in order to treat the disease.
Dan is neither the only one with Crohn's disease nor an example of the worst case. According to the Crohn's and Colitis Foundation of America, there are more than 1.4 million Americans who live with inflammatory bowel diseases in our country, diseases that cause inflammation of the lining of the digestive tract. I bet each person reading this knows someone who has the disease without even realizing it.
Crohn's disease and ulcerative colitis are invisible diseases -- you don't see them manifest, for the most part, on someone's exterior. But internally, Crohn's and colitis patients are plagued with constant anguish -- severe stomach pain, constant bathroom urgency, extreme fatigue, weight loss and malnutrition. The worst part is that their pain isn't limited to that one part of the body -- it radiates all over, causing side effects and emotional distress.
These diseases are not only physically and emotionally painful, but also financially taxing. It is estimated that the direct cost of Crohn's disease and ulcerative colitis is estimated to be over $6 billion annually. I can attest to the high price of Crohn's disease.
Since we got married three years ago, we have paid close to $10,000 out of pocket for Dan's doctor's appointments, medication, and other associated costs. That number would be significantly higher if we didn't have health insurance. His current medication alone, without insurance, costs several thousand dollars per infusion. I am so thankful that we have insurance and aren't responsible for that cost. But for some, they are not as lucky. They don't have insurance and are faced with the difficult decision to pay for the doctor's appointments, medication, surgery, and other associated costs out of pocket or to go without treatment.
Last year, Congress recognized the physical, emotional, and financial turmoil caused by Crohn's disease and ulcerative colitis, and declared December 1-7 as Crohn's and Colitis Awareness Week. It is extremely hard for someone to relate to Crohn's or colitis who is unfamiliar with it. That's why Crohn's and Colitis Awareness Week is so important. During the week, the entire IBD community comes together in an effort to educate those who are unfamiliar with the diseases and to encourage others to join in the effort to find a cure for Crohn's disease and ulcerative colitis.
This year, I am celebrating Crohn's and Colitis Awareness Week not only for my husband but also for all the caretakers who, like me, live peripherally with these diseases every day.
I am celebrating this year because my husband's Crohn's disease seems to be under control for a change.
I am celebrating this year because I want to speak out for others who may be too ashamed of having these diseases to do so for themselves.
Most of all, I am celebrating Crohn's and Colitis Awareness Week this year in hopes to reach those people who have never heard of the disease before, teach them about these terrible diseases, and give them the tools to become IBD advocates in their own right.
Even if you don't have either disease, you can join in and observe Crohn's and Colitis Awareness Week.
Tell a friend about these diseases.
Talk to your state legislator to pass the Restroom Access Act granting employee-only bathroom access to IBD patients.
Raise money to help fund research and find a cure for these diseases.
Wear purple to support a friend, family member, or loved one with the disease.
I'll be wearing purple all week for Crohn's and Colitis Awareness Week. Will you?
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