At times, 11-year-old Elizabeth Smith would lay in the hospital with her mind racing, thinking life wasn’t fair.

It wasn’t fair that she spent much of her time being poked and prodded by doctors rather than playing soccer outside with her friends.

It wasn’t fair that her nourishment came through a plastic tube rather than at the dinner table.

It wasn’t fair that she had to endure endless painful trips to the bathroom — even in the middle of the night.

At times, she struggled to make sense of her life. She just wanted to live life like her peers and put an end to her uncomfortable medical roller coaster ride.

“There would be some days, I would be totally frustrated and really upset,” said Smith, who, at age 6, was first diagnosed with inflammatory bowel disease, a chronic, painful digestive tract condition with no cure. “And there would be other days where I would think, ‘I’m going to do something good with this.'”

After seemingly countless hospital visits, five intrusive colonoscopies, and two anxiety-filled surgeries with one reconstructive surgery to go, life is good again for Smith, who continues to reach for the stars despite her nasty setback.

“She has high expectations,” said Smith’s mother, Karen. “With her having all these challenges, she has set high goals for herself. I have no doubt she will achieve them.”

Elizabeth, who has colitis, an inflammation of the large intestine, will be one of the guest speakers at Tuesday’s Annual Benefit Luncheon for the Crohn’s and Colitis Foundation of America (CCFA). The luncheon begins at 11:30 a.m. and will be held at the Hyatt at Olive 8 in downtown Seattle.

The luncheon raises money for the Northwest Chapter’s Camp Oasis program and helps to fund Northwest-based inflammatory bowel disease research.

Elizabeth’s gastroenterologist, Dr. Ghassan Wahbeh, called her “a tough fighter.”

“She’s one of those kids who is very inspiring at different levels,” said Wahbeh, the director of the Inflammatory Bowel Disease program at Children’s Hospital in Seattle. “She’s one of those kids who came with smart questions that would address some of her fears. That confidence about her was very touching. She would always find something funny even in the toughest of scenarios.”

Wahbeh and Elizabeth’s parents are hoping a second reconstructive surgery in July will be the final step back to a more comfortable, enjoyable life for Elizabeth.

“I’m going to be famous because of this,” said Elizabeth, a fifth-grader at Mark Twain Elementary School, who wants to become a doctor. “That is my goal.”

‘Vicious cycle’

Elizabeth described herself as “pretty normal” until the age of 6, when she first experienced painful digestive flare-ups right after a family trip to Mexico. At first, her parents thought she was just having a bad reaction to some food or water while on the vacation. But after several tests, she was diagnosed with Crohn’s disease, an ongoing disorder that causes inflammation of the digestive tract.

Karen said Elizabeth suffered about two flare-ups a year, was hospitalized twice between 2005 and 2008 and missed several days of school.

“It was kind of a vicious cycle,” Karen said.

In September of 2008, Elizabeth switched to Dr. Wahbeh after her old doctor retired. After several more tests, Wahbeh changed the diagnosis from Chron’s disease to colitis, the lesser evil of the two inflammatory bowel diseases.

However, around the same time of switching to her new doctor, she was experiencing more and more gut-wretching flare-ups.

Elizabeth started taking a powerful medication called Remicade, along with pain killers and anti-anxiety medicine — at one point, Elizabeth said she took 21 different pills in one day.

To make matters worse, Elizabeth had a nasty allergic reaction to Remicade.

“She wasn’t eating, she lost a lot of weight and she was in a lot of pain,” Karen said.

Elizabeth, whose father, Blake, also has inflammatory bowel disease, was admitted to Children’s Hospital Nov. 3, 2008 and didn’t return home until Dec. 24. She didn’t eat solid food for 45 days, Karen said. Doctors were able to treat Elizabeth’s allergic reaction and then tone down the flares and release her from the hospital, but Elizabeth didn’t return to school full-time until Feb. 16, 2009.

During the long hospital stay, neighborhood friends helped to care for Elizabeth’s younger brother, Benjamin, 9, while her parents went back and forth to Children’s Hospital.

Surgery the only solution

Elizabeth returned to school and did not let her medical issues hold her back. She continued to play soccer, she started piano lessons and tried to live a normal life of a young girl.

In June of 2009, she attended Camp Oasis, a week-long camp for kids with colitis. She was excited to meet kids who were going through the same struggles.

But another horrible flare cut Elizabeth’s camp stay short. Her mother picked her up and rushed her back to Children’s Hospital. Karen thought it would be a short stay. She thought doctors would give her daughter some fluids, pain medicine and Elizabeth would be back in action.

Instead, Elizabeth stayed in the hospital for a month and Wahbeh recommended surgery as a solution to Elizabeth’s ongoing problems.

“Finally, it became really, really clear we had no other options but surgery,” Karen said.

After much anxiety, Elizabeth had her first intestinal surgery on July 14, 2009. She returned to the hospital in January and had her first of two reconstructive surgeries. Her second reconstructive surgery — the final phase of her recovery — is slated for this July.

Since surgery, Elizabeth has felt a “night and day difference,” Wahbeh said.

“As far as colitis goes, she should be great,” Karen said as Elizabeth sat next to her with an ear-to-ear grin in the family’s Willow Crest home. “She should be great. She shouldn’t have any more problems. But because it is an autoimmune disease, there are things that will still affect her.”

Back in action

Elizabeth, known as the “Angel Child” to her father, has never let her condition define her, despite her setbacks.

She’s smiles a lot these days because she has returned to living that normal kid life. Last month, she played a part in the school play, “The Emperor’s Clothes.” She plans to play another season of soccer next fall for her Lake Washington Youth Soccer Association team. She continues her piano lessons — “it’s going good, but still not Julliard (School) standards, but I will be,” she said with a chuckle.

Elizabeth also got a once-in-a-lifetime opportunity last April to throw out the first pitch of a Mariners game with Mike McCready, lead guitarist for Pearl Jam who also has Crohn’s disease. McCready, a major spokesperson for the CCFA Foundation, will be honored at Tuesday’s luncheon for his support of the inflammatory bowel disease community.

Like McCready, Elizabeth is also a big promoter of the CCFA. Elizabeth and her parents recently went to Seattle and asked Sen. Maria Cantwell’s staff for more funding for the CCFA. In addition, she is currently working on raising money for her walk team, “Lizzy Super Fabulous Team,” which will take part in the CCFA ‘Take Steps’ fundraiser in July. And this year, Elizabeth plans to attend the entire week-long Camp Oasis, unlike last year.

“Instead of letting this take a negative affect on her, she’s decided to take a real positive attitude,” said Linda Huse, Northwest Regional Director of CCFA. “She’s an inspiration to us all.”

There might have been times when Elizabeth thought life wasn’t fair, but she never gave up and continued to persevere in the face of adversity.

“There’s no question in my mind, Elizabeth will do something amazing,” Karen said. “She’s super strong. I don’t know if I could have gone through what she did and stayed in one piece like she did, but I’m kind of a wimp. She’s not. She’s a tough girl.”