Local family shares pain of Crohn’s to educate others
Cynthia Devereaux’s life changed with a phone call from her 16-year-old daughter in April of 2011.
“Mom, I need you to take me to the doctor,” said Cydney, who was calling from school.
Those 10 words marked the beginning of a long and debilitating fight that Cydney and her family would endure for over a year, and it all began with a stomach ache.
The Three Lakes High School sophomore had been having horrible stomach pains, blood in her stool and constant diarrhea. She had also started to lose weight.
“She had told us she had a stomach ache, but waited so long to tell us about the other symptoms,” recalled Devereaux, looking back at her daughter’s illness. “We took her to her pediatrician who almost instantly arrived at a conclusion-ulcerative colitis.”
An inflammatory bowel disease, ulcerative colitis affects the lining of the large intestine and rectum.
Yet, the initial diagnosis was incorrect according to a St. Joseph’s Hospital specialist in Marshfield.
“Cydney was given a colonoscopy and an endoscopy. The worst thing was waiting for the results. When the doctor met with us, his words were, ‘Her intestines are very angry.'”
His diagnosis was Crohn’s Disease, a chronic illness that can impact any part of the gastrointestinal tract, from the mouth to the anus.
Throughout the spring, young Cydney would face many major issues as her body struggled with the disease.
“She lost 30 percent of her body weight and at her lowest point was only 89 pounds,” said Cynthia, reflecting on the six weeks at St. Joseph’s. “She had a total of nine blood transfusions during her stay, and was fed through a nutrient bag in order to rest her colon. She couldn’t eat any solid food.”
Cynthia remembers the helpless feeling of watching her oldest daughter struggle. “She was withering away in front of me, and I couldn’t do anything to help.”
Cynthia, who owns and operates A Cut Above in Rhinelander, worked out a schedule with her husband, Chuck, to make sure Cydney was never alone the entire time she was in the hospital.
“We live 21/2 hours away, and would take turns splitting up the week. I wouldn’t work Sunday, Monday and Tuesday. I’d leave Wednesday morning, and Chuck would take the rest of the week,” noted Cynthia.
When the young patient returned home, things weren’t always easy.
“She had no strength. She had withered away to the point where she had no muscle tone and couldn’t even walk up the stairs to her bedroom. She watched the July 4 parade from a wheelchair because it was too far to walk,” said Cynthia.
While the teenager struggled over the next 10 months to regain what she had lost, there has been one positive.
“The one good thing out of all of this is that she’s more open and honest with us. She always texts us and communicates a lot more about everything-not just her health.”
Cynthia, at times, still blames herself for the havoc Crohn’s wrecked on her child.
“If I had tried to understand, we could have avoided such a long hospital stay. When she didn’t act like her normal self, I chalked it up to being a teenager,” Cynthia reflected.
Cynthia also feels that her teen’s fear of talking about such “icky” topics such as the gastrointestinal system also led to the disease taking such a toll.
In order to open up the lines of communication as well as education, the Devereaux family has organized a Crohn’s and Colitis Walk next Saturday, June 23, from 9 a.m. to 5 p.m. at the Three Lakes High School Track.
Their goals are simple-raise awareness and money.
“You can come at anytime, and walk as little or as much as you want,” said Cynthia. “I would love to see a ton of people there just to show the support for her. We are hoping it gets people to know what it is, and to not be afraid to talk about it.”
For more information on the 2012 Crohn’s and Colitis Walk, call (715) 550-1194.