Crohn's

Have you ever had a virus that made your abdomen cramp unbelievably? Nauseousness. . . chills. . . pain like a vise grip on your innards?

Imagine what it would be like if it lasted every day for eleven years. Everyday. . . stomach tossing and tumbling and having to dash to the bathroom. . . cockle-burs being pulled backward through the intestines.

That’s Crohn’s disease. It’s a hateful disease. Living with it means scheduling my life around treatments, bathrooms, and food or the lack of it. As one might expect, depression and its problems follow.

Although I have probably had the disease for the past 28 years, I have been officially diagnosed with it for the past eleven. It is unpredictable and vicious. Over time, I have learned which foods aggravate it most so I avoid them, but I can also say that at times anything ingested will make me sick. Eating a food one day doesn’t mean that it won’t make me sick the next. It’s just so finicky.

It’s unpredictable because just when I think that the treatments have it under control, it will flare up again. The treatments range from sulfa drugs, to chemotherapy-like tablets, to steroids, to infusions. The treatments used to settle my digestive tract temporarily, but because Crohn’s is so vicious, it would just become angry and come back with a vengeance. I currently am at the end of therapies except for surgery. Remicade is prescribed for patients with both Crohn’s and rheumatoid arthritis. It works to reduce the inflammation associated with both. It is also an immunosuppressant drug which means it compromises my immune system (and I’m a school teacher?). My gastroenterologist said that they call it “liquid gold”, but that it was more expensive than gold per ounce. He was right. Each treatment is $7,500. I am re-fueled every 8 weeks with an infusion that takes two hours.

For a few days before and a few days after, I am extremely tired and lethargic. But almost immediately after the infusion, I regain my strength. I will have to have the infusions for the rest of my life. Ugh!

I know several people who have been diagnosed with Crohn’s. It affects both male and female, young and old. There should be one perk with the disease—--being skinny, but that doesn’t even hold true for me.

One of my doctors told me that I would just have to learn to deal with it as best I could. I have tried the optimistic approach. I look on the bright side of situations even when there doesn’t seem to be one. I accept and tolerate a lot of things that I normally wouldn’t. . . all in an effort to co-exist with my Crohn’s.

Hey, I know where all the best bathrooms are. I know which restaurants will honor my requests for no black pepper and no iceberg lettuce. I’ve learned what products are made with real or imitation vanilla.

I don’t want Crohn’s to define who I am. I want to go about my life without regard to it. In fact, I hardly ever speak of it except to remind my classes that I have an infusion coming up.

I’ve heard that old adage, what doesn’t kill you makes you stronger. It hasn’t killed me yet, so I guess I’m just getting stronger.