Telling Others about Crohn's
Crohn's disease is a complex, confusing illness for those who have it. How, then, does one explain it to others? It can be rather difficult, but sometimes knowing the right words can make it much easier.
What is it?
In its simplest form, Crohn's disease is a swelling of the intestines that can occasionally result in parts of the intestines closing completely. Imagine a garden hose with a kink in it and you have the general idea.
When I say the intestines, I mean, anywhere from the mouth to the anus, but most commonly the kinks first occur in the small, large, and rectal areas and spread from there. Sometimes this makes it impossible to digest food, resulting in a very quick disposal as it passes through without the benefit of being broken down. Other times it means that food won't even try to travel through, causing nausea and vomiting as it catches just past the stomach and looks for another way out. This is why alot of people with Crohn's are on special diets, as specific types of foods are easier to digest then others resulting in better absorbtion and prevention of nausea and vomiting.
It has been described as living with the worst stomach flu you've ever had every day for the rest of your life. Now, that's not entirely accurate, as there are times when Crohn's patients can live a very normal lifestyle, but the description is still pretty good. It can cause some very painful and embarrassing moments.
What is it like to live with Crohn's?
Living with Crohn's is similar to living next to an airport with an erratic schedule. You know that planes will be coming through, and when they do it will be impossible to ignore them, but you're just not sure when that will happen.
There is no such thing as an average day for a Crohn's patient because every day is an experiment for them. It's a series of decisions:
- Will eating this broccoli omelet for breakfast be okay today? Or should I stick to the tried and true fried eggs to be on the safe side?
- I was good for breakfast, so maybe it will be okay to have this small cut of steak with brown bread for lunch. Do I have any pressing appointments later today I have to attend? Maybe I should just have the chicken breast and fruit salad instead.
- I'm starting to feel a cramp. Should I head it off early and move to a soft-foods diet? Or maybe I should up one of my medications instead. I have that big presentation in two days. It might be best to ask someone else to take the lead on that just in case I'm not able to be there.
- Next week is Tommy's graduation party. Should I take the day before and after off from work so that I can get enough rest to be able to attend it? Or should I just go to bed early all week?
Why are you so skinny?
So now one can see how eating can become an obsession. Beyond that, it can be an exercise in torture for those in the throws of a flare-up. It is, then, no surprise that most Crohn's patients are extremely thin.
Since diet is one of the most obvious changes one deals with, it is likely to be one of the most often questioned. The easiest reply to questions like, "Why don't you want pizza?" is to say that you're allergic. It's not only simple, but it's most likely true as many Crohn's patients find that they are allergic to many common foods.
One Crohn's patient - a high schooler - decided to give his classmates an idea of what his meals were like. During one of his bouts with a flare-up, he brought some extra puried vegetable soup for his friends to try, as well as some of his mom's special brownie recipe. This provided his friends with a little more information of what his life was like which resulted in fewer questions for him. All around a win-win situation.