I have a friend who is fairly new to the IBD world. She was diagnosed with ulcerative colitis last year. She’s had a hard course of it, with four hospitalizations, two bouts of C. diff., and two different biologics. She lost 30 pounds at one point and now is up more than 10 pounds from her comfortable weight from all the steroids. Last week, she said her hope was that to reach a point where she would not think about her ulcerative colitis every day.
I hesitated when she said that, unsure how to answer. The fact is, this is a chronic disease that never lets up. There may be periods where you feel well, but in my experience, you don’t ever really forget you have it.
In my first few years with Crohn’s disease, I had a pretty easy time, rarely getting sick. So, I didn’t think about it that much, except for the huge jar of Asacol that sat on my nightstand, reminding me to take the pills each day to stave off attacks. But I didn’t think about it in terms of my everyday life. I wan’t worried I would feel sick or not be able to do something. I knew that if I got sick, my doctor would prescribe a drug like Flagyl, which was what worked on my flare-ups at the time, and I would be better in a few days. Occasionally I would panic if an attack lasted too long.
But that was back then. Over the past five years or so, the disease has run rampant over all the systems of my body — my digestive system, my skin, my joints. Pain or discomfort, at least, are daily companions, and I think about them all the time. Even on a day I feel good, I’m amazed that I feel that good — so Crohn’s even shows up in my mind when it’s unnecessary. Even when I am able to have a day free of Crohn’s complications, I still think about it.
It’s not usually the first thing I think about when I wake up, but it’s close. Right now I am on a prednisone taper (down to 15 mgs!) and I take it each morning with breakfast. It’s hard to ignore when it’s in your face that early in the day. I also have been having the “phantom rashes” that can come with Crohn’s; you can’t see them, but my wrists and parts of my scalp become suddenly and inexplicably itchy. Of course, I’m constantly thinking about what is safe to eat. And I just got over a cold that turned into three weeks of Crohn’s discomfort.
So no, I don’t think not thinking about it for a day is possible, not at this point in my life anyway.
I didn’t know what to tell my friend when she told me her goal, so I said nothing. Her course may be entirely different than mine. I sure hope it is. But IBD is not picky. It will do to you what it wants, without you having any say in it.
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