At the tender age of 6, Kimberlee experienced the sudden onset of excruciating stomach pain and bouts of bleeding and diarrhea. “It got so bad that when I went to the bathroom, I would be yelling and crying because there was so much pain in my stomach,” recalls Kimberlee, now 16. “It was the worst pain I ever felt.”
In need of medical care, Kimberlee was admitted to a hospital near her hometown in Massachusetts. After multiple tests and procedures during her three-week stay, Kimberlee was diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD), a condition in which one or more parts of the intestinal tract become inflamed.
“I thought it was a stomach bug that would go away,” Kimberlee says. “Unfortunately, it didn’t.”
During the December hospitalization, she was prescribed anti-inflammatory medications and underwent a blood transfusion and a series of infusions of the intravenous drug Remicade.
She finally left the hospital two days before Christmas.
“Kimberlee’s doctor gave us the green light to go home for the holidays once he knew Kim was stable and we could handle all the medications, machinery and IV equipment that she needed,” says Tammy Roy, Kimberlee’s mother.
Throughout the next year, Kimberlee managed her illness until a severe allergic reaction to a medication stopped her in her tracks.
“After a discussion with Kimberlee’s doctor regarding other medical options, treatments and Kim’s health status, I asked for her to be transferred to Boston Children’s Hospital,” Tammy says.
The move to Boston Children’s Hospital
Here, the Roy family partnered with Boston Children’s gastroenterologist Athos Bousvaros, MD, MPH and a team of experts who, following multiple tests, diagnosed Kimberlee with ulcerative colitis, a chronic condition, similar to Crohn’s disease, in which the inner lining of the large intestine (also called the colon or bowel) and rectum become inflamed.
“When Dr. Bousvaros met with us, he gave us a game plan. He was very genuine and kind,” Kimberlee says.
The game plan included surgery
Because all medical options had been exhausted and Kimberlee’s health issues were becoming progressively more complicated, Dr. Bousvaros scheduled a three-stage ileostomy/J-pouch procedure led by Boston Children’s surgeon Craig Lillehei, MD. This procedure calls for the removal of the colon and the connection to an external pouching system called an ileostomy bag. This bag is designed to collect digestive contents or stool.
“After her first surgery, Kimberlee began to recover,” Dr. Bousvaros says. “She adjusted well to having her colon removed, and started to eat better and gain her strength back.”
One year later, Kimberlee underwent a second surgical procedure to create an internal J-pouch. This pouch is an internal storage place for stool in the absence of the large intestine.
Since her surgeries, Kimberlee has regained her life and is an active teen. She’s a member of her high school varsity swim team and a member of the National Honor Society, and has her driver’s license and a part-time job.
“I have been healthy for a long time and I am able to do anything I want and haven’t been stopped by ulcerative colitis,” Kimberlee says. “I am very thankful to those who took care of me, and I owe my life to them because they gave me my life back.”
Equally important to Kimberlee is her ongoing involvement with the Crohn’s & Colitis Foundation of America. Her hope is to increase Crohn’s and colitis awareness and have a positive impact on the lives of others managing these conditions.
“Kim is a cheerful, outgoing and athletic young lady who is a great role model for other children with Crohn’s or ulcerative colitis,” says Dr. Bousvaros “Her vivacious and down-to-earth personality are an inspiration to me and to the other health care professionals that have known her over the years.”
To read more about Boston Children’s Hospital and the treatment of Crohn’s disease and ulcerative colitis, visit http://thriving.childrenshospital.org.