Our patients’ stories: ’Crohn’s disease surgery didn’t slow me down’

By Mackenzie Sullivan

During my senior year of high school, my appendix ruptured. I felt sick off and on for weeks, but it took almost two months before my symptoms got so bad that I needed to see a doctor.

Mackenzie Sullivan

After learning that I had been living with a ruptured appendix for weeks, I was rushed into surgery. And while the ruptured organ was successfully removed—one of my doctors later told me he had never seen anything like it—my health never really recovered. Whether it was night sweats or horrible abdominal pain, I was constantly dealing with some symptom or another.

As I spent weeks recovering in the local hospital, I began rapidly loosing weight. I dropped to less than 100 pounds, far below the average for a 5″9′ 17-year-old.

As a runner and athlete, I thought I knew my body well—and though I couldn’t have told you exactly what was wrong with me from a medical standpoint, I knew something wasn’t right. As the time ticked by and the symptoms began to worsen, my doctors recommended I visit Boston Children’s Hospital’s Inflammatory Bowel Disease Center, hoping they they could help provide the answers that had eluded my care team up until that point.

Once I arrived at Boston Children’s, I was tested for many potential problems, but everything came back negative. (We later discovered that at the time my insides were in such tough shape that my body was actually hiding the infection, trying to shield the rest of my body from the damage, resulting in the negative tests.)

To help patients like Mackenzie, Boston Children’s has created an eBooklet that teaches children and their families every thing they need to know about living well with IBD. Get your free copy today.

Every day I was in pain, but I continued to participate in sports and go to class. I can still remember running in races and feeling as if someone was stabbing my stomach with a knife. Still, no matter how much it hurt, I promised myself that I wouldn’t let the pain stop me. I used it as motivation to win.

Mackenzie and friends before a road race

I’m still proud of the determination I had in the face of adversity, but it did lead to problems. On July 4, I woke up and prepared to run my hometown’s annual 5K road-race with my sister and two close friends. I was excited, but was also in particularly bad shape that morning. With each step, pain would shoot through my gut, making walking a chore, never mind running. I was going to back out of the race, but I just couldn’t bring myself to admit that my symptoms were limiting what I could do. Determined to give it all I had, I laced up my shoes and convinced myself to fight through the pain and complete the race. I managed to make it all the way, but the damage it did to my body was severe—I woke up the next morning with an abscess (a pocket of infection that forms inside of the body due to extreme inflammation) on my stomach.

I went back to my team at Boston Children’s and was this time diagnosed with Crohn’s disease. Hearing you have a chronic disease isn’t good news, but having a name for the symptoms that had dogged me for so long was a relief. I was glad to know there was a known source for my pain and that there were treatment methods available.

I hoped that now that my condition was identified I could get treatment and quickly move on with my life. I was gearing up to start college in a month; the sooner I got back to my old self the better. Unfortunately, given the severity of my case, my doctors said I would need a resection—a surgery that removes part of the intestine—typically requiring a minimum of two months’ recovery time.

So with a very heavy heart, I deferred college for a year to focus on my health. I am not going to lie; it was scary not knowing what the future holds while putting off something as important as college really frightened me. Although I was scared, I trusted that my team at Boston Children’s would do everything in their power to get my life back on track.

Mackenzie at Boston Children's

It turns out that my faith was well-placed. Just minutes before the resection, my surgeon looked into my mom’s teary eyes and told her not to worry because he would treat me “like she’s one of my own daughters.” And that is exactly what he did.

As my recovery and follow-up care continued, I came to learn that every single member of my care team at Boston Children’s shared that level of dedication. The nurses and doctors turned the hospital into a welcoming environment, and it started to feel like a second home to me. A lot of the nurses would join me when I FaceTimed with friends or would just swing by my room to gossip.

The doctors were just as accessible. It wasn’t uncommon for one of them to drop by my room after a long, hard day’s work and just chit-chat about life. It made me feel like they cared not only about my physical state but my mental state as well.

Mackenzie and Dr. Grover

This one-on-one attention is especially true of Amit Grover, MB, BCh, BAO, whom I see on a regular basis to manage my condition. Not only is he an incredible doctor, but he has become one of the most important people in my life. His dedication to my health is amazing. It may sound weird for a person with a chronic illness that required surgery to call herself lucky, but when I think about Dr. Grover, that’s exactly how I feel. I truly wish everybody living with medical issues could have a Dr. Grover in their lives.

To learn more about Dr. Grover and Mackenzie’s great patient/doctor relationship, read this blog.

Thanks to my surgery and the care of Dr. Grover and his team, I’m currently in remission. To keep me that way, Dr. Grover has put me on a drug called 6mp. It’s powerful so he monitors its effect on me closely, but so far it appears to be working well.

The year I took off from school to manage my Crohn’s happened not to hold me back, but to show me what I could achieve. In the absence of school, I worked on organizing a 5K road race called “Mackenzie’s 5k for Crohn’s Disease.” I worked all year on the project, securing all the needed insurance policies, police details, corporate sponsorships and publicity that an event like this needs to be successful. It was hard work, but the event kept me busy, motivated and driven all while allowing my body time to heal. (That old sense of determination was back, but in a slightly different role than on the running course.)

Mackenzie addresses the crowd at the race she organized

By the time we fired the starting pistol at my race, there were more than 400 racers crowding the starting line, and $20,000 had been raised to benefit Crohn’s disease research. I’ve been in my share of races, but crossing the finish line that morning was easily the most amazing moment of my life.

Living with Crohn’s disease hasn’t been easy, but the care I received from Dr. Grover and the rest of the team at Boston Children’s has left me stronger than ever. It’s a strength I know I will carry with me for the rest of my life. Although I turned 20-years-old this August, I intend on trusting Boston Children’s Boston with my health for years to come.

To learn more about how the Inflammatory Bowel Disease Center treats children like Mackenize with difficult-to-treat Crohn’s disease, visit their website, or call 617-355-2962.