Living With Ulcerative Colitis

How a friend's triumph over a disease inspires me

Surgery looming couldn't stop Alicia from knitting a sweater for Mr. Rogers in Pittsburgh

Today, I am thinking a lot about a particular friend of mine. Her name is Alicia, and she’s currently recovering from her second of three major surgeries to remove her colon and thus rid her of a condition known as ulcerative colitis.

Before meeting Alicia, I knew a bit about UC and even some people who have the disease. My impression was that it was a condition of discomfort and inconvenience—not one with life-threatening capabilities. On the contrary, as I’ve learned through Alicia’s experience, the prognosis can be quite grim. Symptoms range from abdominal cramping and diarrhea to joint pain, significant weight loss, gastrointestinal bleeding and worse.

According to PubMed Health only about half of UC patients experience mild symptoms: “Patients with more severe ulcerative colitis tend to respond less well to medications. Permanent and complete control of symptoms with medications is unusual. Cure is only possible through complete removal of the large intestine.” Yikes.

Alicia has struggled with UC since late 2004, and she’s had some extremely severe bouts that have landed her in the hospital and frightened the crap out of those of us who care about her. She’s had to make some major life changes, such as uprooting her life in New York City and moving to Pittsburgh, to be closer to her family when the next flare-up hits. But through it all, she still manages to create and achieve more incredible things in a day than most people do in a week. Case in point: Her most recent surgery was yesterday. Just two days earlier, on Saturday, she installed a public art piece: a giant crocheted red cardigan (she made it herself) on the enormous Mr. Rogers statue on Pittsburgh’s North Shore. This feat is huge and special all on its own—I mean, how many people get a chance to do something like that, ever? That Alicia did it two days prior to a major operation and a several-week stint of painful recovery, is both mind-blowing and absolutely what I’ve come to expect from her. (Speaking of crocheting: After Alicia’s first hospitalization, she taught herself to crochet while recovering at home, bedbound and bored. Since then, she’s created a booming Etsy store and had her work featured in numerous books and magazines.)

On Sunday morning, she texted me this: “I didn’t do 5k today…bed at 230+achy feet+work.” I read this not as “Alicia opted out of the morning’s road race,” but rather as “Alicia probably had a boatload of fun last night, which kept her out until 2:30, and today she’s going to complete some orders and squeeze as much life out of this day as she can.” I love having her as my friend because she is fun and smart and creative, but also because she embraces and values life in a way that most don’t. Somehow, she hasn’t let her disease take that away from her.