The Soft Parade

Ulcerative Colitis & How to Cope

I was diagnosed with Ulcerative Colitis when I was 16. I was running to the batroom (literally running) very frequently, having horrible and painful cramping, and most alarming was the [high amount of] blood in my stool. At first I thought it was dysentery, but that’s what happens when you watch to many war movies. Finally I worked up the nerve to see the doctor and was diagnosed right then and there.

For those of you who don’t know, Ulcerative Colitis is a chronic inflammation of the lower digestive system, specifically the large intestine. Symptoms of this disease and other related diseases (such as Colitis or Chrons) largely stem from the most major symptom, and that’s inflammation. Your colon (large intestine) is only so big, and for normal people that’s just fine and dandy, but once it becomes inflamed the passage becomes much smaller. From the inflammation comes extreme urgency to use the facilities, uncomfortable and painful cramping, and what almost feels like constipation (which is actually known as tenesmus). The term “Ulcerative” in the name comes from the fact that there are many small ulcers caused by the inflamation, this creates a whole new set of pains as well as rectal bleeding. Other symptoms may include loss of appetite, weight loss, fatigue, dehydration, and can even lead to colon cancer or rupture in extreme cases.

When people ask me how I’m doing, I tend to shrug it off and say I’m fine and it sounds worse than it really is. That’s a lie. When I was first diagnosed especially I not only felt sick, but I looked it. I was around 6 feet tall and only 140 pounds, my skin was a mix of pale and yellow, my eyes were sunken in, and generally unappealing. At this point I was still very unaware of my condition and simply went with what my doctor had suggested, and that was high doses of a steroid known as Prednisone. This chalky little pill (x6 in my case) works wonders on the feeling of Colitis, allows for normal bowel movements, but does have some very nasty side effects. Worst of which that I experienced was loss of vision, one of those side effects that rings the safety alarm, so now I need to wear glasses. The most common side effects are mostly cosmetic in nature, but when you’re 16 they’re pretty much life and death. Moon face (swelling of the cheeks), acne (especially on the back), increased hair growth, and weight gain. Many doctors outright refuse the use of this highly effective drug due to the minor and severe side effects alike, and with good cause.

Most Ulcerative Colitis patients are given a drug known as Asacol 5-ASA. It’s an anti-inflammatory, tasteless and odorless, and essentially coats the walls of the digestive system and acts as a topical drug (despite being taken orally). This drug works, but its effects are limited and most patients, myself included, still have most (if not all) of their symptoms, but reduced. To me, that’s just not good enough. I was never Mr. Sports nor was I ever a partier, but every victim of this debilitating disease wishes for a normal life, and there are ways to manage the disease and lead that life everyone wishes for.

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