I developed ulcerative colitis when I was 15, which is abnormal. Since ulcerative colitis develops and flares up according to stress, most people don’t develop this type of illness until they’re in middle to late adulthood.
I was going through plenty of stress in my life at the time, at least by teenage standards. I was coping with serious depression (like I want to die and I’ll find a way depression), my best friend had moved away and worst of all, at the end of my freshman year my parents moved me to another school because I was flunking my classes (due to my depression).
Not only was I coping with depression and other teenage stressors, I was on Prednisone for my asthma, a medical steroid that makes you gain weight. I was overweight during what I deemed the most important time in my life. This didn’t help my self image at all. Neither did having a condition which involved pooping myself on the regular and having to explain to people that I had to make a run to the bathroom.
As described in Briar Lawry’s, “IT HAPPENED TO ME: I'm A Fabulous 20-Something And I Have A Colostomy,” I, too, played medication bingo. I had been on Prednisone much of my childhood, and as a teenager and young adult I began taking nearly 20 pills a day, with regular colonoscopies every two years.
My G.I. doctor didn’t seem to sympathize with my condition in the least and considered the root of my issues to be my “refusal” to take my medicine, because I didn’t always adhere to morning and nightly medical enemas she had prescribed. I tried my best to take them, but it was just as painful to take that medication as it was to eat.
Speaking of eating -- a daily battle ensued. Most days I contemplated if I would even eat due to pain. I tried fad diets, hoping these would cure me. A book that praised the glory of almond flour made it seem so simple, but it only irritated my colon. Cutting out certain foods didn’t help either. My colon was irritated by ALL foods: greasy, fiberous, seeds, nuts, lactose, sugary -- it didn’t matter. And, as a result of dehydration from using the restroom so much, I was weak most of the time. I had a hard time walking or standing for any length of time.
Then of course there were all the “accidents.” I’ll save you the details but let’s just say these were so embarrassing that was I once moved to tears after a mad dash through a restaurant full of people to get to the restroom in order to clean myself up.
Finally my doctor decided I was so ill that we would try Remicade, an infusion-based medication (kind of like getting chemotherapy) for my UC.
It didn’t work.
Right before my senior year of college, my doctor and several of her cohorts surrounded me in her office and carefully told me that after 10 years I was considered at risk for cancer. I had dark circles under my eyes and was so weak I could barely sit up. With no argument in my voice I said to her, “Well if it doesn’t happen now, it’s going to happen later, so we might as well do it.” And it was decided. My colon was to be removed.
This wasn’t a partial colectomy. No, we went all the way. My surgeon removed my entire large intestine and for four months I was given a colostomy bag. Now you wouldn’t think pooping in a bag would have been a great thing, but at least I was no longer in pain. There was also the fact that I knew in just a few months that I’d be sewn back together and my stoma would be stuffed back into my body.
As I healed, all I could wear were a sweatpants, which I would normally never be seen wearing in public.
Months later, after my small intestine was reattached in a procedure they call J-pouch, I was repaired. I had to use a walker at home for a couple of days as I healed.
During one visit to my surgeon, he suggested my mother come in too. Then he told me something I would remember for the rest of my life. Apparently they had found abnormal cells in my colon, and they had been at an advanced stage. That is, a stage before a certain deadly disease. That’s when it hit me. I had almost gotten cancer. This wretched illness that I'd had to put up with for 10 years of my life was going to give me a big thank you in the form of cancer.
As he continued to talk, my head was buzzing with only one thought: I almost got cancer. The worst part was, I’d originally planned on putting off the surgery until I graduated from college -- a whole other year. Who knows what could have developed during that time? I am even more grateful that I had my colectomy because of that news.
It’s been eight years since my colectomy and my life has improved so much. Unfortunately I did develop pouchitis, an irritation of the inner pouch that replaced my colon -- basically irritable bowel syndrome of the pouch. So some day I may have to go to a colostomy bag. That doesn’t frighten me at all.
I’m no longer afraid that I might have an accident in public. No longer scoping places out for where their restrooms are located. And I’m no longer embarrassed to talk about my former illness.
Because of what I went through as a child and teenager with illness, I intend to work with children who have terminal and chronic illness and help them navigate a medical care system built for adults. I think after what I’ve been through, it’s the least I can do to help.