EDITOR’S NOTE: This is the second story in a three-part series.
CHICO — after a parade of hospital and doctor visits that led nowhere, Hayley Ennis, now 16, and her mother, Jill Ennis, were looking to a new hope.
In March 2010, Hayley’s continuing search for a cure took her to the UC San Francisco Medical Center, and the first visit was probably the worst day of the whole ordeal.
“By the time I went to the appointment at USCG, I was throwing up at least 15 times a day. I was barely functioning.”
Even with volumes of charts, files, X-rays and medical tests in hand, when a teenage girl who is suffering vomiting and subsequent weight loss first sees a new doctor, the question of bulimia or some other eating disorder comes up.
Without planning to, Hayley found an efficient way to avoid those questions when she had her first visit to UCSF.
She had started vomiting before she got to the hospital, and, “I vomited throughout my entire appointment and it was a long appointment.”
Apparently, that was also the day when Hayley’s stomach entirely stopped working. Technically, it is a condition called gastroparesis, a situation where food just won’t pass through the stomach even though there are no obstructions.
“From that day forward, I did not keep down a sip of water or an ounce of food.”
With her stomach not tolerating even the most mild food and liquid, the UCSF doctors had to rely on a feeding tube to get nutrition into the teen.
Usually, such a tube is inserted in the nose and goes into the stomach where the liquid food is just dribbled in, but that wouldn’t work with Hayley. her stomach instantly ejected even the liquid food that hit it. As a result, the doctors had to thread the tube past her stomach and directly into her intestines so the liquid feeding would stay in her.
In subsequent months, the motivated teen went to school with the nose tube taped to her cheek.
The fact that the feeding had to bypass her stomach had another unanticipated side effect.
The presence of food in the stomach is what tells the brain you are not hungry, and the absence of food there tells the brain you need food.
“What that means is you are constantly hungry. So for the whole year I was starving. I was getting my nutrition, but as far as feeling, I was hungry. I made a promise, now I will never say I’m starving.”
The failure of her stomach also meant the persistent pain she had been suffering for months increased.
Using the traditional one-to-10 scale for pain severity, Jill said Hayley could function with pain in the four-through-six level. She could go to school. When things hit the seven-to-10 level — and they did — “She was flat on her back, really miserable.”
The question of what could be done for the pain was something of a medical conundrum. any strong pain medication slows a healthy person’s motility, and with Hayley, anything that would further retard her non-existent motility made the gastroenterologists balk.
At one point while she was in the hospital and in crushing pain, the attending pediatricians were ordering morphine to give her some relief, and when the gastroenterologists arrived, they would angrily countermand the order.
Eventually all of the doctors reached an understanding that healing and agony don’t work together and the pain meds were allowed.
The UCSF visit did result in a new diagnosis. They found evidence of eosinophilic gastroenteritis, which is an allergic reaction in the stomach that can cause all of the symptoms Hayley was presenting.
So she was sent home with renewed hope and a trio of medications to try, one at a time, that were meant to improve her motility. The medications failed and the hope crashed again.
Both Jill and Hayley said it was about this time, in the late summer of last year, that they began to wonder about the future. nothing was working, and nobody seemed to have answers.
Hayley said she realized that tube feeding couldn’t go on forever and when the body would no longer tolerate the tube, the option was intravenous fluids. That would work for only so long.
The next option was a gastric pacemaker, a device that passes a tiny electric current through the stomach muscles to make them flex to move food along.
Hayley said the problem there was the gastric pacemaker doesn’t work for everybody, and patients as young as her weren’t supposed to be candidates for the pacemaker.
Even after everything that had happened, and the growing fear that her survival might be in doubt, an answer was just around the corner.
Staff writer Roger H. Aylworth can be reached at 896-7762 or raylworth@chicoer.com.