When Sarah Allison of Oak Ridge spoke in front of officials at a televised Knox County Commission meeting on May 27, 2003, having butterflies in her stomach was the least of her worries. In fact, the reason 6th District County Commissioner Mark Cawood invited Sarah (then age 13) to speak at the meeting was to share her experience with inflammatory bowel disease, which refers to two chronic conditions: ulcerative colitis and Crohn’s disease.

“Sarah is one of the bravest young ladies I have ever known,” Cawood said. “I really admire her.”

When Sarah spoke, Knox County Mayor Mike Ragsdale was so impressed with her positive attitude, hard work and courage in the face of her medical challenges that he proclaimed that day as “Sarah Allison Day.”

Sarah had been having challenges with abdominal pain and heartburn long before she came to see Youhanna Al-Tawil, M.D., pediatric gastroenterologist at Children’s Hospital, on November 18, 2002. Sarah saw Dr. Al-Tawil to be evaluated for possible gastroesophageal reflux disease (GERD). During Sarah’s physical exam, Dr. Al-Tawil discovered blood in her stool as well as many other indicators that she was suffering from something more serious, possibly ulcerative colitis or Crohn’s disease.

Sarah was admitted to Children’s Hospital for evaluation, including an endoscopy, which showed serious inflammation in her colon. Biopsies and lab tests were completed during the two weeks she spent in the hospital, and these supported a diagnosis of IBD.

When Sarah went home, her treatment plan included daily doses of several medications. If a patient does not respond to the medicine, surgery may be considered. “Since ulcerative colitis only affects the colon, it is a curable disease if the colon is removed,” Dr. Al-Tawil explained. “But surgery is not for everyone, and it is always best to see if medications can help before going that route.”

After Sarah was admitted to Children’s Hospital for a second time, doctors increased her steroids, and she was released after four days. Just a few days later, on January 27, Sarah came back to Children’s with extreme pain and uncontrollable bleeding.

The damage done by the disease made removal of her colon, rectum and appendix necessary. The surgery, which took place at Children’s Hospital on February 10, 2003, was such a long process, it had to be coordinated and performed by two of the hospital’s pediatric surgeons. “Gus” Papadakis, M.D., and David Schindel, M.D., performed the surgery using specially-designed instruments and a camera placed through small incisions to reduce scarring and shorten Sarah’s recovery time. It was the first time this particular surgery, a laparoscopic colectomy, was performed in East Tennessee.

Sarah has made tremendous progress since her surgery. She has regained most of the 30 pounds she lost post-surgery. When Drs. Papadakis and Schindel removed Sarah’s colon, they also did a procedure called ileoanal reservoir. An ileoanal reservoir (or J-pouch) is an internal pouch formed from the small intestine that provides a storage place for stool in the absence of the colon. A temporary ileostomy, a surgically-created passage through the skin of the abdomen into the lowest part of the small intestine, is also made. This temporary ileostomy diverts the stool into a bag worn on the abdomen, protecting the pouch while it heals.

Four to six months after the first surgery, if an Xray of the pouch shows it has healed, then a second surgery to remove the ileostomy is scheduled. The pouch now becomes functional so that waste passes into the pouch, where it is stored until a bowel movement occurs. Sarah had her ileostomy removed in August 2003, and although the pouch generally takes up to one year to fully adapt, Sarah functioned well and will continue to improve over time.

In spite of her recent challenges, Sarah has applied a positive attitude to all aspects of her life. Dr. Al-Tawil is especially appreciative of Sarah’s outlook because treating the underlying problems caused by IBD, such as emotional stress, is just as important as any other treatment. The emotional damage created by the disease can be nearly as destructive and devastating as the physical damage.

Knowing how support can help or hurt someone with IBD, Sarah and her mother worked with Linda Smithson, Surgical Services Clinical Nurse Specialist, to start a support group at Children’s Hospital for other IBD patients and their families. Sarah and her mom also wrote a book together titled “Rotten Roger, A Good Colon Gone Bad: A Teenager’s Story of Crohn’s Disease/Ulcerative Colitis.”