Five-year-old Abbie Neitz was on all fours with her big brown eyes glued to the playground turf at Polliwog Park early Monday afternoon. She had seen a pink gem—matching her frilly top and Puma tennis shoes—twinkling under the sun but could no longer locate it.
Her mother Julie Neitz repeatedly tried to shift her attention, suggesting a trip to the dollar store instead. Yet Abbie remained stubborn and persistent, inspecting the ground inch by inch, until her mother spotted the nail-sized plastic gem under a shade.
Perhaps it was with a similar resilience that young Abbie overcame the rare circumstances of her ulcerative colitis, an inflammatory bowel disease which last year required the removal of her colon.
“They tell you kids are resilient and you never really think about it,” Julie Neitz said, “until we’ve been through this.”
According to Megan Furst of Take Steps Los Angeles, this is precisely why Abbie was chosen as the honored hero for this year’s annual fundraiser walk organized by the Crohn’s & Colitis Foundation of America.
“She’s gone through quite the journey in the last year, being such a young patient.” Furst said. “She showcases staying positive, having a positive energy through it all.”
Last year, a few weeks before her fourth birthday, Abbie was finding blood in her stool. A colonoscopy administered by a gastrointestinal specialist netted a swift diagnosis.
“We had never heard of ulcerative colitis before,” said Neitz, who is originally from Korea and moved to her husband Brian’s hometown of Manhattan Beach in 2005. “And in Asian communities it’s really rare.”
She and her husband would learn that colitis is most prevalent between ages 15 to 30 or after age 50, that such digestive diseases affect some 1.4 million Americans, and that no direct cause is yet known.
Abbie shortly thereafter began her treatment comprising steroids and anti-inflammatory pills. After two months, her symptoms continued to persist, and in April she was admitted to UCLA Children’s Hospital. There, she was put on another anti-inflammatory drug called 6 MP, but to no avail.
In May, a day after she was released, Abbie insisted she needed to go back to the hospital – a surprising plea from a girl who upon discharge was always eager to go back to her preschool, Circle of Love in Manhattan Beach.
“She knew inherently that something was wrong,” Neitz recalled. “When we went back, that’s when she started having severe pain. They thought she had toxic megacolon, which is an enlargement of the colon. Similar to an appendix rupturing, a colon could possibly do the same.”
The following week, Abbie, at age 4, had her colon removed. For the next seven months, she lived with a colostomy bag attached to her body to collect fecal waste. The pain was gone, so despite the initial unfamiliarity, Abbie returned to her active lifestyle of swimming lessons and biking at YMCA.
“If you ask her where’s your colon, she’ll say it’s on vacation,” her mother said. “Every once in a while she’ll say, my colon is in Mammoth skiing, or in Hawaii surfing, or in Boston at the baseball game. Those are the places we’ve taken them on vacation.”
Abbie underwent another operation last October—the “J-pouch procedure,” which removed her rectum and created a “J” shaped reservoir out of her small intestines to discharge her waste. She has about 200 to 300 staples in her J-pouch, which will stay in her body.
Upon seeing the bag, her 3-year-old brother Wyatt asked if her “tum tum was okay,” Neitz recalled, smiling.
Abbie reassured him that it was. “Yeah, I just have this for a little bit. My tum tum will be fine.”
Six hospitalizations, three surgeries, twice-weekly blood draws and several complications later, Abbie is now healthy and well. From screaming and kicking on the hospital bed without a clue about her condition, she has learned to voice herself to doctors and nurses and has become quite the expert on internal organs, her mother said.
She will be starting kindergarten at Grand View Elementary this fall.
Take Steps Los Angeles takes place on June 29 beginning 4 p.m. at Crescent Bay Park in Santa Monica. To help Abbie’s team achieve its goal of raising $5,000, visit this link. Eighty-two percent of money raised goes into Crohn’s disease and colitis research.