Living with Crohn’s disease

Kasandra Partain looks and acts like a typical 16-year-old. If anything, what’s noticeably different about the pretty brunette is her mature, non-self-pitying way of speaking. You’d never guess that she has a debilitating and painful chronic illness.

“If anything went down my throat, I would almost cry, it hurt so bad,” she recalled of when she began to come to the realization that something was terribly wrong with her health. “It was like swallowing glass or knives.”

Seated next to her mother, Kendra Partain, at the downtown Starbuck’s—one of her favorite places to get one of the few treats she is allowed, a cup of coffee with sugar and a small amount of cream—Kasandra spoke of the period leading up to her September 2007 diagnosis of Crohn’s disease.

“Basically, I made myself eat” during “six months of straight diarrhea,” acid reflux, painful lesions in her esophagus, exhaustion, weight loss and severe abdominal pain that led to many missed weeks of school, as well as the loss of friends who didn’t understand what was going on with her and sometimes thought she was faking illness. Kasandra, now a high school sophomore, began home-schooling this academic year, as that’s more compatible with her illness.

Crohn’s disease is an incurable inflammatory bowel disease (IBD) caused by the body’s immune system’s attacking the gastrointestinal tract anywhere from the mouth to the anus, causing lesions, debilitating abdominal pain, diarrhea, vomiting and weight loss. In Kasandra’s case, it also includes sleep disturbance; sometimes she can’t fall asleep until 5 or 6 in the morning.

Usual onset for Crohn’s disease is between 15 and 30 years of age. It is estimated that between 400,000 and 600,000 Americans suffer from it.

Saturday (May 9), Kasandra, her parents and 13-year-old brother Quentin will travel to Sacramento to join up with fellow sufferers of Crohn’s and ulcerative colitis (another IBD) on the west steps of the State Capitol to take part in the “Take Steps for Crohn’s & Colitis” walk to raise money to help find a cure for the debilitating diseases.

This will be the second time that Kasandra has taken part in the Crohn’s & Colitis Foundation of America’s annual awareness-raising walk, which takes place in 80 cities across the country over the course of spring and summer. This year, though, she will also be—as an “Honored Hero”—one of two speakers at the event, the other being a 13-year-old boy from Granite Bay, near Sacramento, named Alexander Marcoccia.

CCFA walk manager Jillian Hacker, who has known Kasandra since last year’s event in San Francisco, described both her and Alexander as having a “mission to make people aware [of Crohn’s]. They’re really tired of the silence … [and] of people not knowing about their disease. They both want it not to be so ‘disgusting.’ ”

Kasandra is excited about the opportunity to be once again in the company of fellow Crohn’s patients and to speak out about her disease—commonly called “the bathroom disease”—in order to raise awareness and money, and help remove the stigma associated with bowel diseases.

The trip to Sacramento alone will be a challenge, as Kasandra will require carefully timed bathroom stops on the way there and back.

Crohn’s has put Kasandra’s parents, Richard and Kendra, “on a very steep learning curve,” as her mother put it, “from not knowing anything [about the disease] to learning everything we can to help our daughter.”

“Fruits and vegetables are commonly seen as healthy,” said Kendra Partain, an instructional aide at McManus Elementary School. “But for [Kasandra], roughage goes right through her, or something with seeds may get stuck in her intestinal area and get infected.”

“I have to peel apples, because the peels are roughage,” explained Kasandra, “and I have to cut all the seeds off of strawberries. … If I have one piece of lettuce, you won’t see me for two days—I’ll be constantly in the bathroom.”

“When she was a kid,” said her mother, “[Kasandra] gravitated toward fruits and vegetables rather than the Halloween candy bowl. Now, the things she loves most, she can’t have.”

Except for a little spinach, which her doctor recently allowed back into her diet, Kasandra can eat no leafy greens, corn-on-the-cob (which she loves) or popcorn, and no ice cream or yogurt, as dairy for the most part aggravates her condition. Kasandra can tolerate soy milk, but “not actual soybeans,” she pointed out, unless it is “really deeply cooked so that there’s no nutrients in them at all.”

Kasandra’s diet consists largely of meat, fish, potatoes (without the peels), pasta (without tomato sauce, which is too acidic for her) and rice.

She gets regular flu vaccinations and is particularly concerned about the spread of swine flu. Kasandra takes precautions, like washing her hands often, and staying away from sick people, because any illness she gets hits her harder than the average person.

“I have the immune system of about a 65-year-old lady,” observed Kasandra, who takes several medications three times a day that help control the disease.

“People die from this,” offered her mother. “She’ll be on medicine for the rest of her life.”

Kasandra, who plans to attend Chico State after graduation to study theater and psychology, is undeterred by her condition. She recently acted in the Hearthstone School production of The Emperor’s New Clothes and would love to become an actress.

After her diagnosis, Kasandra looked on the Internet to see which famous people have suffered from Crohn’s disease. Hollywood actress Shannen Doherty and Presidents Eisenhower and Kennedy are among the names she came up with.

“My motto,” said Kasandra, “is, ‘If a president can run a country with Crohn’s, I can run my own life.’ ”