SYRACUSE — Chelsea Rushton recently lost her best friend to a disease she herself has been battling for the past several years.
Haley Stonehocker, 19, of Spanish Fork, died Oct. 11 from gastroparesis, a condition in which the muscles of the wall of the stomach work poorly or not at all. It prevents the stomach from emptying food properly and interferes with digestion.
Stonehocker’s death has been difficult for Rushton. The two were extremely close and often leaned on each other for support and encouragement.
“Haley was Chelsea’s rock,” said Rushton’s mother, Sherri Petersen. “She was her best friend and confidante.”
Rushton, 24, of Syracuse, was diagnosed with the disease that affects approximately 5 million Americans shortly after the birth of her second child a little more than three years ago.
Since then, she has experienced severe nausea and vomiting. On a good day, she said, she will only vomit once. Most days, however, it is multiple times no matter what she tries to eat.
“This so often sounds like an eating disorder, but in reality, patients would do anything to be able to eat and be normal,” Rushton said in a text message.
“I’m on my way to the hospital for pain and nausea meds right now. My six-year-old son said, ‘K, love you mom. See you in a couple of days.’
“It breaks my heart and makes me feel so guilty, and it’s all because of this horrible disease. It’s a horrible disease that affects my family so much.”
According to the Mayo Clinic, it is not always clear what leads to gastroparesis. But in many cases, gastroparesis is believed to be caused by damage to the vagus nerve that controls the stomach muscles.
Last year, Rushton traveled to California to receive a pacemaker to help with her chronic nausea and vomiting. The procedure, called enterra therapy, involves electrical stimulation of the lower stomach with a fully implantable system that consists of two thin wires and a neurostimulator.
The pacemaker does not help the pain go away, but does help tremendously with the nausea and vomiting, Rushton said. When she starts to decline, she travels to her specialist in San Francisco to have adjustments made to the pacemaker.
“The pacemaker is not a cure, by any means,” Petersen said. “But if it helps the nausea and vomiting for one hour of one day, she’s happy with that.”
Rushton’s symptoms are treated with intravenous infusions to keep her hydrated and nourished; she also relies on a feeding machine.
As of now, she said, dehydration is her worst enemy. Rushton has been vomiting so often and so violently, her throat has bled.
“Her pain level is still high, and this is just a given for the disease,” Petersen said. “We did almost lose her last December when she was hospitalized with a line infection, so we are very careful with her daily care.”
In a nutshell, Rushton said, gastroparesis pretty much dictates her life, and, according to the National Institutes of Health, there is no cure. Patients are treated based on their individual symptoms.
“It’s hard for others to understand, and no one really realizes that food is basically our whole life,” she said.
“Not to be able to keep anything down, being nauseated 100 percent of the time, it’s the worst feeling in life. It’s like having the flu every day of your life.”
Rushton’s husband, Jeremy, said in just one week this month, the gastroparesis community lost three people. He said it’s imperative for people to learn about it and for doctors to do more extensive study and research.
“If you have a bear in the house, you don’t just throw a blanket over the bear and pretend it’s not there,” he said. “The bear will still keep destroying your house. If you want the bear to be gone, you find the way to get rid of it.
“Chelsea’s ‘bear’ has destroyed enough of her life as well as her family’s, and we want to take the blanket off and completely remove it from her body. Please let us be heard, and let a cure be found.”
In the meantime, Rushton said, there is support out there. G-pact.org and oley.org are tools to help learn about the disease, support groups and general news.
“We need more research done on gastroparesis, with viable solutions,” Rushton said.
“We need to find out how to treat this disease and not just mask the symptoms.”