December 1-7 is Crohn’s and Colitis Awareness Week. I’m not sure why they started on a Saturday…
Have you ever had the stomach flu? Do you think Crohn’s or ulcerative colitis is similar? Well it’s not really. Think about it. If you have the flu, it lasts maybe one week, or two if you’re unlucky. You stay in bed, you call off work. You follow a common regime of prescription medication and over the counter products that will help you get well. Maybe your mom or spouse or roommate feels bad for you and brings you soup and extra pillows and you get to catch up on your Netflix queue. Your work is understanding about your absence because you’re normally healthy and don’t miss much work, plus they don’t want you infecting coworkers or customers. Maybe you’re an hourly employee without paid sick leave and you miss a week of pay, which is a hardship for sure.
Let’s say you have Crohn’s disease instead. Sometimes having a bowel movement is so painful that you need to take prescription pain killers. You may spend the evening on the bathroom floor, writhing in pain, alternatively convinced you are dying and wishing that death would hurry up and end your misery. You may need to run the to restroom the vomit after eating. You may just be doubled over in painful cramps throughout your day. Your options for medication are limited. The ones that tend to help have dangerous and annoying side effects like weight gain, mood swings, extreme hunger, night sweats, and can cause aggressive cancer. Even with these medications, you still may not feel better. If fact, your initial complaint may improve (slightly) but you probably will need a few more prescription medications to offset their side effects. If you are on one of the newer medications, you may need to spend an entire day hooked up to an IV in a medical center every few weeks, or you may need to give yourself a painful injection in the stomach every one or two weeks. These medications may improve your disease, or help keep it under control, but they are very expensive, thousands of dollars.
One major difference between Crohn’s disease and the flu is that it does not last just one or two weeks. It’s a chronic illness and there is currently no cure. Going to the doctor when you have the flu is annoying, but imagine how sick of doctors you’d get after 10, 20 years of going at least every six months to your specialist, who probably is not even in the same town. Some of the tests the doctor will want to do require you to take a day or two off work and spend half a day in a hospital, getting radiation that will also increase your risk for cancer. These tests are also expensive! The last one I had done required a copay of $150 and I had good insurance. Because there is no cure, you will likely spend much more than one week out of work due to illness per year. Since you are not contagious your boss may not be sympathetic and expect you to come to work. Your boss may not understand that it is difficult to work from home during a bad flare because the pain killers cloud your thinking. You refrain from mentioning pain killers as much as possible so you aren’t labeled a drug addict. Because it is awkward to always talk about bathroom issues, you might never convince your friends and coworkers that you are actually ill. Symptoms can pop up unexpectedly, so people will think you are faking since they saw you out at a birthday party the night before. Your friends stop inviting you out because you always cancel at the last minute.
Crohn’s and colitis are not “just like the stomach flu.” People with the stomach flu are not stigmatized and called “gross.” The public at large can deal with short term illnesses without attaching negative attributes to the sufferer. When it comes to Crohn’s and colitis, we still have a long way to go to breaking down these issues that patients face. And of course, we need better medications, and a cure.