Kyli Wolfson was 26 years old, newly engaged, and loving life when one day she woke up with the worst stomachache of her life. She’d had digestive issues for years — pains and sensitivity to various foods — but no one was sure why. Her symptoms didn’t seem the fit any one illness, so she was used to brushing them off.
But that agonizing stomach ache in October 2012 was impossible to ignore. “I felt like I was kicked in the abdomen,” she remembers.
She rushed to the emergency room and underwent blood work, which revealed that a certain digestive enzyme called lipase was elevated.
“It’s acute pancreatitis,” the ER doctor told her. “It will resolve on its own in a few days.”
The pancreas is an organ behind the stomach that produces enzymes needed to digest food, in addition to hormones like insulin. Normally, the enzymes are only active after they reach the small intestine, but in acute pancreatitis, they start to digest pancreatic tissue itself. The condition is most often caused by heavy alcohol use — up to eight drinks per day for five years or more.
But Kyli didn’t fit that profile at all. Despite her previous inexplicable digestive problems, she was a healthy young woman. The only treatment was to stop eating and wait it out. For four nights, she lay in the hospital on IV fluids. When she was discharged, the hospital staff instructed her to start eating again slowly. But every time she tried, the pain in her abdomen stubbornly flared up.
“It never even changed,” she says. “It was still 10-out-of-10 pain.”
Even though her fiancé made her soup and tried to feed her, she just couldn’t eat. Already a tad underweight, she dropped to 95 pounds — and nobody could explain why she wasn’t getting better.
She left her small town in North Carolina to visit a bigger hospital in Wake Forest, where the doctors hooked her up to liquid nutrition so she could subsist. But they, too, were baffled.
In December 2012, she was transferred again to an even bigger hospital at Duke so she could undergo extensive testing that wasn’t available at the smaller facilities.
“We had felt like we’d exhausted all options,” Kyli recalls. “It was so scary how the doctor came to my room and said, ‘We don’t really see this; when someone develops acute pancreatitis, it goes away.'”
The hardest part, she says, was her constant, gnawing hunger — she was literally starving, but she couldn’t eat. The nutrition drip alone was keeping her alive. By then, she was only 80 pounds, and still in excruciating pain. Whenever she tried to eat, it felt like the food was literally burning her insides.
Finally in January 2013, one of the tests uncovered the truth. The test, called an ERCP, sent a camera down her throat to touch her pancreas. It is a risky procedure that can result in life-threatening complications, but by then doctors felt they had to try it.
That was when they discovered that her condition was something that had been going on for years — probably since childhood. It was chronic pancreatitis. And the prognosis the doctors described was bleak.
Chronic pancreatitis is an inflammation of the pancreas that does not improve. Over time, it gets worse and leads to permanent damage. According to the National Pancreas Foundation, about 3 to 10 in every 100,000 people faces this diagnosis, most commonly men between the ages of 30 and 40.
“Doctors tend to think patients are either alcoholics or narcotic drug abusers, so there’s a lot of stigma attached to it,” Kyli says. “There’s so little awareness about this condition.”
In her case, doctors identified a mutation in a gene called CFTR that is strongly associated with chronic pancreatitis. (Two copies of the mutation causes cystic fibrosis.)
While the diagnosis explained her mysterious constellation of symptoms stemming back years, it did little to improve her actual life. “It was a complete upheaval,” she says. “We stopped planning our wedding and it became a 100% focus on how to fix what was going on.”
The doctors told her she would require the feeding tube long-term because she couldn’t digest food anymore. To hear that was nothing short of devastating.
“We’re food people,” she says, of her and her fiancé. “We look to bake, order takeout. Now he felt bad eating in front of me.”
She bought bakery-scented candles to try to cope. For a year and a half, she ate literally nothing. Then she joined a Facebook support group, and learned that some people with her diagnosis were eating again. In fact, they were living a normal life. They’d undergone a radical, 14-hour surgery to remove the pancreas and transplant its cells into the liver, so the livers could function as their pancreas. This prevents diabetes.
The first of these surgeries happened in the 1970s, but, according to Kyli, most people with the condition do not even know it exists and live out their days in pain on a feeding tube. But she was determined to prevent that fate for herself.
The hospital that has done the most of these surgeries is at the University of Minnesota. After doing a great deal of research, Kyli and her fiancé flew there in July 2013 to get approved for the procedure. But because she was so weak, her approval was delayed until January 2014.
Then, at last, the day of her surgery arrived. She was so terrified that she couldn’t wrap her mind around what was about to happen — the complete removal of her pancreas, spleen, gallbladder, appendix, and her duodenum. The surgeon joked she would weigh 5 pounds less afterward. But she’d be able to eat again.
Under general anesthesia, the time passed in an instant. When she woke up, the searing, unbearable pain in her abdomen was gone. “I was so relieved,” she remembers. “It still hurt from surgery, but it was a totally different pain than I went in with.”
She stayed on a feeding tube in the hospital for 2.5 weeks before the surgeon came in and told her it was time to try food again — for the first time in a year and a half.
“I was excited, but nervous, since it had been so long since I’d eaten,” she says. “Sure enough, I had chicken broth and juice and it didn’t affect anything. It was amazing. I sent a picture to my mom.”
Quickly after that, she guzzled down ice cream and eventually lobster and pizza, shocking her surgeon with how quickly she adapted again to food. Today, just over a year later, she’s back to her normal weight of 110 pounds and eating normally once more. She and her fiancé are finally back to planning their wedding.
To be sure, she does still struggle with some pain related to scar tissue, and she has to be careful about her immune system since she lacks a spleen. But she couldn’t be happier with her outcome.
“The no. 1 thing that helped was the support group I joined and knowing other people going through it,” she concludes. “When I was in the hospital at first, I felt like the only person in world with this strange condition. They saved me and gave me hope.”