“If it has hooves, it’s a horse, not a zebra” – Pancreatitis is not one dimensional

A Northwood, Ohio woman wasn’t satisfied with the answers she received about her chronic pancreatitis. So she dug deeper and turned to IU Health for treatment.

By T.J. Banes, IU Health Senior Journalist tfender1@iuhealth.org

It was just before Mother’s Day 2016 when Amanda Baerwaldt experienced the first bout of what would later be diagnosed as chronic pancreatitis.

“It was as if someone had thrown a switch in my body that unleashed the most excruciating pain of my life,” said Baerwaldt, 36. “I am no stranger to pain, I played roller derby and had un-medicated childbirth with both my girls – one of which was born at home.”

This was different. Like a phantom in the night, it left and then it returned a couple weeks later. After awhile, the pain became more intense and lasted for longer periods.

“I chalked it up to my obesity, poor food choices, and stress. I didn’t see a gastroenterologist until March 2017 because I was so embarrassed about my weight,” said Baerwaldt. Initial answers were vague. But after one of her most severe episodes she was rushed by ambulance to a local hospital – it was the first of many hospital stays for attacks of chronic pancreatitis.

“This would continue to happen anywhere from two to seven weeks throughout 2017, resulting in sometimes week-long hospital stays. I lost official count but I believe I had ten hospitalizations for Idiopathic Recurrent Acute Pancreatitis (IRAP) and had gone through every test in the book to determine why,” said Baerwaldt. There was one test she was pushing hard for – ERCP with Sphincterotomy. The complex procedure involves the cutting of the biliary sphincter and is typically carried out during endoscopic retrograde cholangiopancreatography (ERCP).

“As I started researching my symptoms and risk factors for varying illnesses associated with acute pancreatitis, reading the description of sphincter of Oddi dysfunction (SOD) hit home for me. After my third hospitalization, the gastroenterologist who was rounding brought it up as a definite possibility. Then I saw an Integrative Medical Doctor who agreed,” said Baerwaldt, who has been married to her husband Eric for 11 years.

The challenge was finding a doctor who would perform the test. One of her early doctors told her: “If it has hooves, it’s a horse not a zebra” suggesting that Baerwaldt’s research was not necessarily the answer to her diagnosis.

But she was determined to find relief.

As she continued to research her options, she took up rowing to help her physical and emotional wellbeing. She started a Facebook group named “The rowing pancreas.”

In one post she wrote: “This is chronic pancreas disease as a mother. I am exhausted, I’m nauseous, and I’m in pain. My bones hurt, my eyes are barely open. But we’re at the zoo because I have some alone time with my daughter and that’s what she wanted.”

The disease changed her from an active parent enjoying daily trips to parks, play dates with friends and girls’ nights out, to a mother who lived in fear that something would happen to her children if she experienced an attack away from home. She became depressed and isolated. By December of 2017, just nine months from her first documented attack she had dropped about 75 pounds.

As she began researching hospitals and providers that would support her choice for an ERCP she ran across IU Health’s Dr. Jeffrey Easler, a gastroenterologist.

“I drive four hours to see Dr. Easler because I was unheard by other doctors. I present differently. Doctors looked for other things and I started my own research,” said Bearwaldt. “Dr. Easler was the first doctor to validate my feelings and felt confident I’d pull through the procedure just fine.” The procedure was completed at IU Health on Jan. 3, 2018.

On September 14th, Dr. Easler will take part in a free patient/caregiver education symposium at the Drury Plaza Hotel in Carmel. The event will take place 9 a.m. to 4 p.m. and will include a light breakfast and lunch. The Indiana Chapter of the National Pancreas Foundation sponsors the event.

Bearwaldt knows her diagnosis will always be part of her life but she’s learned about managing the disease and her care.

‘My advice to others is to learn as much as you can independently about your disease and find a doctor who will listen to you.”

Photo by Bergen Howlett Photography.