While propped up on a hospital bed Wednesday in Fresno, Sarah Portilla said she was looking forward to eating German chocolate cake with vanilla ice cream. The 31-year-old Kerman woman has had a long time to consider her next meal: Over the past three years, because of a rare digestive disorder, Portilla was unable to eat solid food without becoming violently ill.
“I had a couple vivid dreams about sitting down to a huge banquet and just eating everything,” she said. “I’d know it was going to make me sick, but wouldn’t care because it feels fantastic.
“And then I would wake up, and I would cry because it’s not real.”
Up until about two weeks ago, Portilla received her nutrients from a plastic bag tucked inside a backpack. For a year and a half, she subsisted only on total parenteral nutrition from intravenous bags. A nurse stopped by her home once a week to check on her vitals and test her blood.
Portilla switched to the fluid-only diet after an excruciating 18 months in which every meal led to vomiting and stomach pain similar to food poisoning symptoms. She started eating differently. When that didn’t work, she ate less. Eventually, she tried only eating baby food. Nothing worked.
Her health deteriorated. Her top row of teeth fell out due to malnutrition. The mother of two, about 5 feet 7 inches and 115 pounds when healthy, shrank to 72 pounds.
From the very beginning, Portilla said, doctors dismissed her symptoms.
“They told me I had subconscious anorexia,” Portilla said. “They said to ‘take Tylenol and Tums – it’ll pass.’ That happened for three years.”
Some even blamed the increasingly frail mother of two young children. Chase, 3, and Lillian, 8, crawled around their mother’s hospital bed at Community Regional Medical Center during her interview.
“There was a time when the doctors took me to the side and accused her of using drugs,” Portilla’s husband, Anthony, said as he stood near his wife’s bedside. “I’m not a doctor, so I put a hidden camera in the house to investigate all the possibilities.”
The hidden camera did not catch any drug use, but Portilla was glad he placed it.
“I would see her pass out on the floor,” he said. “You could see him (Chase) right next to the cameras and playing next to mommy.”
“He was 8 months old and wondering why mommy was passed out on the floor.” Their son, who was born only a few weeks before Sarah’s first symptoms, is a bundle of energy in the crowded hospital room.
Portilla said he would rush home from work and either call 911 or take her to the emergency room. He estimates that they went to the hospital at least once every week for three years.
His wife’s illness has been difficult for their family.
Portilla had to take 80 days off from work this year and 112 days last year to care for his wife and young family. He was emotional as he thanked his employer, River Ranch Raisins in Kerman, for not firing him during the trying time.
His wife also suffered psychologically. During the worst moments, she was placed on suicide watch by ER doctors.
Sarah Portilla, normally upbeat and articulate, became somber and paused often when talking about the dark times.
“I – wasn’t as strong as I should have been.”
Portilla finally found relief when her doctor referred her to Dr. Amir Fathi and Dr. Babak Eghbalieh, who specialize in gastrointestinal surgeries at the University of California at San Francisco’s Fresno branch at Community Regional. They diagnosed her with superior mesenteric artery syndrome and gastroenteritis, meaning food was obstructed as it attempted to pass through the stomach and into her bowel.
Fathi and Eghbalieh opened a new hole in Portilla’s stomach and rerouted her gastrointestinal system in a major surgery two weeks ago. She should live a normal, healthy life from now on.
Eghbalieh said he’s only seen such a case three times in eight years of specialty practice. This is the first case that required a major operation.
Statistically, Fathi said, this complication affects about one in every 10,000 people. About one-third result in death.
Portilla is on her way to recovery.
She will stay in the hospital Thursday for observation, then will be released. She’s started eating again, but it’s been a rough transition. After three years of equating food with pain, Portilla said it’s mentally difficult to eat.
“Having a sensation of being full now is as foreign to me as maybe walking on Mars would be to you,” she said.
Her stomach shrank drastically and must be stretched. Her intestines are still getting used to working again. Hospital staff first fed her ice chips, then broth and other liquids. She can now eat a few bites of regular food at meals.
The family is grateful that Medi-Cal insurance has paid all the medical bills so far. Portilla belongs to a support group for those who endured similar illnesses, and she said some of her fellow members will “be in debt for the rest of their lives” as a result of their treatments.
Portilla is excited about the chance to return home. Her son has never known life with a healthy mother, she said. Their entire family routine will change. She’ll be able to sit at the dinner table with her family for the first time.
“I can share my food with my toddler now,” she said. “You know – kids offer food, and I’d have to say no – no.
“Now I can say yes.”