My Life With Ulcerative Colitis

By Luke Gulbrand, as told to Stephanie Watson

I’ve always referred to myself as a runner. I started running track in the sixth grade. In 2007, I ran my first marathon. Seven years later, I conquered my first triathlon. Running has always been my way to burn stress. It’s been there for me, even when my life has been crazy.

I was healthy and active for most of my life. If I caught a cold once a year, that was a lot for me. But during my junior year at the University of Wisconsin, I started having serious gastrointestinal (GI) issues. I was going to the bathroom constantly, and I had blood in my stool.

The first doctor I saw at school told me, “It’s just a stressful time for you.” I didn’t agree with the diagnosis, so I went back home to Green Bay and my parents made an appointment for me with a GI doctor.

I’m Going to Fight It

A colonoscopy identified that I had inflammatory bowel disease (IBD). At the time, my doctor thought I had Crohn’s disease. Later it started to look more like ulcerative colitis (UC), because it was affecting my colon.

Once I had a diagnosis, I had a decision to make. I could have gotten stuck in a “this isn’t fair, woe is me” kind of thinking and let the disease overtake my life. I decided that I was going to fight it, push to do anything I wanted to do, and not let the disease win against me. That took a lot of determination and perseverance.

My Quest for Symptom Relief

Doing everything I wanted to do required reining in my symptoms. Throughout the years, I tried every possible UC medication out there. I took pills, injections, infusions. Some of the medicines would work or give me some benefit, but only temporarily. Eventually they’d stop working.

The only treatment that consistently helped me was a steroid. So I got into a routine. I would try a new drug, and once it stopped working, I would take high doses of a steroid for a while to control my symptoms.

I couldn’t stay on steroids for long because of the side effects. They weakened my immune system to the point where I was getting multiple colds and other respiratory infections. I got shingles twice. Skin warts erupted on my hands. Kidney stones became a problem. But as soon as I’d taper down my dose of the steroid, my UC symptoms would come back. It wasn’t a long-term solution.

As I was trying to tame my symptoms, I was training for one of the most intense endurance races in existence.

Ironman

The Ironman is a competition that combines a 2.4-mile swim, a 112-mile bicycle ride, and a 26-mile run. During a typical Ironman race, participants are often on the course for 13 to 17 hours at a time. Not an easy feat when you have to use the bathroom multiple times a day, and you need to get there quickly.

My UC symptoms were peaking in 2014, just as I was training to finish my first Ironman in Madison, WI. I probably had my worst symptoms ever, but I refused to give up.

Running was always the toughest part of the race for me, because it involves the most motion in my GI tract and the rest of my body. The more I move, the more I have to go. I knew that I was going to have issues during my 3- to 5-hour run, so I tried to be strategic. Did I have a place to stop and go to the bathroom? Could I run into the woods? I had to plan the day’s events very carefully.

Sharing My Story

While I was training, I started the blog LukeyGtri to share my story. At first, my intent was to let people know why I wasn’t going to be able to do the Ironman as quickly as I normally would have. Another reason was to come out of the closet with my disease. I had only told my family and a few close friends at that point. The blog was my chance to tell the world what I was dealing with.

It was hard to write about UC, but I got so much amazing support and feedback from that blog. It also connected me to the Crohn’s & Colitis Foundation’s Team Challenge, which participates in swimming, biking, and running competitions to unite the IBD community and raise money. I’ve been involved with Team Challenge for a few years now — as a patient honoree, an athlete participant, and as a coach for the Denver Team Challenge running team.

When I joined Team Challenge, it was the first time I had ever met another person with IBD. I didn’t realize there were so many of us out there. It’s amazing to be surrounded by people who’ve been through the same things and who understand what I’m going through. There’s such a good support system. It helps me to know that I’m not the only one dealing with UC. It also gives me a community of people I can reach out to in tough times.

More Like Normal

In late 2015, I had my first of three surgeries to remove my colon and rectum. My surgeon created a j-pouch, using the end of my small intestine to collect waste so that I don’t have to wear a colostomy bag.

In theory, removing the diseased part of my digestive system should relieve my symptoms, and so far it has. I haven’t had any major IBD symptoms since my surgery.

I do go to the bathroom frequently — about six to eight times a day — just because I don’t have the large storage system that most people have. But to me, that’s awesome. I was probably going 15 to 25 times a day before my surgery. I have less urgency now, and I’m more in control of when I go. That’s been the biggest win. Not having notice was one of the toughest aspects of my symptoms. When you always have to be close to a toilet, it changes your life.

Staying Positive

From the very beginning since I was first diagnosed, I decided that I wasn’t going to let UC control my outlook on life. It’s something that I can’t control, but I can control how I respond to it. I try to keep a positive attitude. I’m going to persist and do the things I want to do, regardless of this disease. Having goals helps me stay motivated.

My advice to anyone who’s been diagnosed with UC is, don’t be embarrassed about it. The first step is to accept it. Accept that you don’t have the power to change that you have the disease, but you do have the power to determine how you’ll live your life with it.

I still do all the things I did before I was diagnosed. I just have to do them a little differently now.

Sharing my story has been a big factor in bringing me to the point where I’m at in my life. It prevents me from being ashamed of my disease. A secondary benefit is that I’m helping other people understand UC, and showing them that they also don’t have to be afraid of it.

Luke Gulbrand is an amateur athlete and blogger who advocates and raises money for the Crohn’s & Colitis Foundation.