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Why Ulcerative Colitis Is Not Just A Bathroom Disease

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Ulcerative colitis (UC) certainly feels like a bathroom disease when I spend so much time on the toilet. I get sick of constantly focusing on the stupid bathroom. I’m always alone there. No one else understands the pain I experience while I distract myself by imagining Marjorie Simpson’s hair in the patterns on the white vinyl floor. It can be lonely, especially at night. 

Most people disengage and dismiss my suffering as soon as they hear the words bowel or diarrhea. I get it; it grosses me out too. But UC is not your great aunt’s irritable bowel (which I really don’t want to hear about). Rather, the symptoms go way beyond the bathroom. 

I’ve had UC for 56 years, beginning at age 10, and I still get symptom surprises. I’ve had sores in my mouth, aches in my bones, insomnia, anemia, vomiting, worry … it’s an endless list. I was recently hospitalized with all the symptoms of sepsis, a general body shut-down, due to, you’ve guessed it, inflammation from ulcerative colitis. One time I broke out in a high fever with red lumps running down my legs. The doctors said it was erythema nodosum, which sounds really impressive, but it’s just Latin for “red lumps.” There are the endless questions in the chat groups, “Has anyone else had…?” When things are bad, my body seems ready to break out everywhere, and I don’t know if these symptoms are from UC, medication side effects, or stress.

But there’s also a comfort in knowing that my body is a whole system, trying hard to let me know that all is not well when my immune response goes awry. UC is an autoimmune disease, which means it’s much bigger than simply targeting the bowels. However, I refuse to be defined by the illness or its favorite bodily functions. The other day I caught myself thinking, My bowel feels good right now, then I suddenly realized, No, damn it, I feel good. 

When I don’t feel good, I sometimes focus on the parts of me that are working, like my breath and thoughts. I can choose to use a breathing exercise to relax or concentrate on the word I’ve chosen to guide my day. When I succeed at either of those things, it’s a real accomplishment; I’m doing something good for myself. With so much out of my control, it’s been worthwhile learning to focus on what calms me and my little bowel too. 

Who wants to live life up their own ass (or arse, as the Brits and Australians say so nicely)? Even when I’m stuck in the bathroom, I can shift my focus. I’ve brought plants, pictures and inspiring books into that room, even if I only glance at them for a moment. (It beats looking at the floor.) During that moment, I am providing comfort for myself; an exhalation, a caress. If I can focus on that in between the bad bouts, I can get a little space, some perspective, and enough strength to raise my head, look outside the window and see the trees and a whole world beyond UC, reminding me that I am part of life. I’m participating to whatever degree is possible now, which will be much more down the road, especially if I take care of myself. 

Just like my house itself is more than a bathroom, colitis is more than just a bathroom disease. Yes, my body’s fundamental plumbing is damaged and in need of repair. But I can help it along by giving it the love and attention it needs and that I need. By focusing on my wellness, such as my strong legs and pain-free feet, I can coax myself into calm. And calm is a state where I can be open to receive some of the love and support that’s out there but invisible when I’m all tensed up and trapped inside my own pain. When I slip into that larger perspective, I’m able to make choices that can keep me out of the bathroom, or at least make it less the center of my world. No, UC isn’t just a bathroom disease. It is so much more than that, and so am I. 

Originally published: January 22, 2021
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