Living a Life That Isn't Defined By IBD
Jul 02, 2018 Cedars-Sinai Staff
The most important thing Natalie Harris Brown wishes she could tell everyone just diagnosed with Crohn's disease: The way you feel in that moment isn't your "new normal."
You won't always feel like you're digesting glass. You won't always feel as scared as she remembers being when she was first diagnosed 21 years ago.
"I was stunned, had a 5-minute cry and accepted that this was my life," says Natalie, now 44. "I didn't know any differently. What I didn't know back then was feeling that sick every day wasn't going to be my 'normal.' I wouldn't have to settle for that."
"I want everyone to know there's hope for IBD patients. We're all good at faking it and putting on the happy face. We have a chronic illness, and we will for the rest of our lives. But, you can make the best of everyday, and you can have an amazing life."
Bleeding and abdominal pain first prompted the Texas native to see a specialist when she was 23 and about to start a career with a home building company. She was diagnosed with Crohn's disease—a form of inflammatory bowel disease (IBD). The condition most often affects the small bowel and colon, but it can affect the entire gastrointestinal tract. While sometimes the disease is mild, in many cases it can cause debilitating symptoms including abdominal pain and cramping, bleeding, diarrhea, fever, fatigue, and weight loss.
Natalie continued to see the specialist near her Texas home, but her condition gradually worsened. For a year she could eat only grilled chicken and mashed potatoes. Everything else hurt too much. She was taking 22 pills a day.
This progress wasn't good enough for Natalie or her family. Their family has a history of cancer. They learned something valuable from their experiences supporting loved ones with serious illness. Take control of your medical care. Find the experts and go where the care is best. Though they lived in Texas, they didn't let geography dictate Natalie's care.
Their search for the right doctor led the family to Stephan Targan, MD, director of the Cedars-Sinai Inflammatory Bowel Disease Center. Targan leads groups of doctors and scientists working together at Cedars-Sinai and all over the world to find better treatments for inflammatory bowel disease, a group of digestive disorders caused by immune reactions in the body including Crohn's disease and ulcerative colitis. Natalie met Targan in 1997.
He changed her treatment. Her Texas doctors had been treating her colon instead of her small intestine. She went on a new medication, but her small intestine had already been damaged. It tore, and she had surgery to repair it.
She started new biologic therapies, which work by blocking a protein in the immune system that causes inflammation. The medications worked well to manage her condition, along with her own careful daily habits. Paying attention to her food, exercising and taking rest as necessary helped keep her on an even keel between trips to Los Angeles for her regular appointments with Targan.
Since that time, she experienced few serious bumps with the disease until her worst bout started in 2014 and stretched over 2 years. Her colon became completely blocked and required 2 surgeries to repair it. She returned to Cedars-Sinai from Texas for treatment, her family moving into a nearby apartment to take care of her throughout the long recovery.
The blockage and resulting complications caused a hole, called a fistula, to open on her stomach. That's taken years to heal. She still bandages a small spot that hasn't fully closed just yet.
Now, Natalie's Crohn's is in remission and she's in the best shape of her life. Her numbers—the results of the blood tests used to monitor her disease to make sure her medications are working, and a flare isn't imminent—have never been better.
She's had a successful career with a home building company in Texas. She's now semi-retired and works on the company's corporate responsibility and philanthropy efforts. She loves yoga, the outdoors and her 2 cocker spaniels.
What she wants every Crohn's patient to know
"It sucks, it hurts, and you're going to have some bumps, but you're going to be OK," she says. "You're going to have a good life. We deal with this chronic disease every day, but we don't let it define us."
Aside from listening to your doctor, she advises listening to your body. When you're tired, rest. Follow your doctor's instructions and give your body exercise.
What she wants every parent of a Crohn's patient to know
"It's not your fault that this happened to your child." And, she adds, while making meals is the way many families show their love, be understanding when the Crohn's patient in your household can't eat that delicious meal.
What she wants everyone with Crone's disease to know
When she looks back on the day she was diagnosed more than 2 decades ago, she marvels at the differences in her own life, and in what's changed for all IBD patients. Then, she only had a couple treatment options to choose from. Now, there are more than a dozen medications available to treat IBD.
She raises money for IBD research through 5Ks and half-marathons, combining her love of athletics and desire to contribute to finding a cure for these diseases.
"I want everyone to know there's hope for IBD patients," Natalie says. "We're all good at faking it and putting on the happy face. We have a chronic illness, and we will for the rest of our lives. But, you can make the best of everyday, and you can have an amazing life."