Living with Pancreatitis, a Patient Advocates for Others

June 25, 2018 6:00 AM

A debilitating disease hasn’t stopped a woman from moving forward. And it has inspired her to help more patients do the same.

For more than four decades, Georgiann Ziegler never thought about her pancreas.

“I had no knowledge of what my pancreas did or where it was located,” she says.

An endocrine gland located in the abdominal cavity behind the stomach, the pancreas produces hormones, including insulin, to help the digestive process.

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Ziegler learned the facts quickly after being diagnosed with chronic idiopathic pancreatitis in 2004, at age 43. The resulting flare-up kept her hospitalized for more than two months.

She had already experienced two previous attacks of acute pancreatitis painful inflammation that occurs when digestive enzymes produced by the pancreas are activated before being released into the small intestine, thus attacking the pancreas itself.

Which is why Ziegler, now 57, thinks daily about her pancreas.

She volunteers with the National Pancreas Foundation’s Michigan Chapter, serving as a board member and fundraising chairwoman. She’s also a patient advocate for Michigan Medicine, helping others navigate their care and being a source of comfort and knowledge.

And she has learned to have a positive attitude about her health challenges.

“It’s been a journey, but I am blessed with good days, and my good days are really great days,” Ziegler says.

Causes and symptoms of pancreatitis

A pancreatitis flare-up is marked by abdominal pain or tenderness, fever, chills, vomiting, nausea, clay-colored stool, oily stool and weight loss. It usually requires hospitalization.

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Pancreatitis can be hereditary. In other cases, triggers include gallstones, alcohol abuse and, in more rare instances, medication, birth defects, cancer or cysts.

In some cases Ziegler’s included no cause is identified, prompting the designation of idiopathic pancreatitis.

“There is still a stigma attached to it because people often associate it with alcoholism,” says Ziegler, who still spends 50 to 100 days a year hospitalized despite experiencing fewer flares.

“But I’ve made peace with not knowing the cause, because if I found the answer, would it change anything?”

Pancreatitis often leads to food malabsorption and diabetes. Ziegler has both and takes food enzymes to improve that absorption.

Struggle and progress

Ziegler readily admits to struggling after the diagnosis. She felt lost. Frequent hospitalizations contributed to her early retirement in 2010.

“Having pancreatitis changed my life and the life of my family,” says Ziegler, who wed husband Mark 36 years ago. “My husband didn’t marry me with this illness. We learned it together.”

One of the most attitude-adjusting lessons came from Michelle Anderson, M.D., a Michigan Medicine gastroenterologist. Ziegler had an opportunity to go to Europe but was hesitant.

Anderson handed Ziegler her business card, Ziegler’s records and a list of her medicines along with a new philosophy: Go. Make those plans.

Ziegler went to Greece in 2015 without incident.

“I did think about the possibility of a flare, but it didn’t ruin the trip,” she says.

A source of support

The care team at Michigan Medicine has made all the difference, Ziegler says.

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“You have a team of people caring for you and communicating together about your health,” she says. “They don’t talk at you, but with you. The partnership is key.”

One of her newest partners: Matthew DiMagno, M.D., who is director of Michigan Medicine’s Comprehensive Pancreas Program. He met Ziegler a year ago after hearing her speak about her positive outlook on her condition. As medical director of the National Pancreas Foundation’s Michigan Chapter, he asked her to join the board.   

“She has a hard-to-predict, roller coaster-like condition,” DiMagno says, “and yet she has come to grips with it, puts a positive spin on it and reminds others to not let it take over their joy.”

DiMagno will help spread that message as course director for the second annual Patient and Family Centered Care for Pancreatic Diseases, a gathering for patients, caregivers and physicians set for 11:30 a.m. to 2:30 p.m. Sept. 29 at The Inn at St. John’s in Plymouth, Michigan.

He and a team of experts also will swap strategies on living with the unpredictability of pancreatitis, navigating care and innovative approaches to chronic pain. The event will provide updates and resources from the National Pancreas Foundation.

Registration is required by Sept. 15. Admission is free.

Ziegler plans to attend. Last year, the Westland, Michigan, resident was a featured speaker, discussing her health journey and answering questions from medical students and attendees who have faced similar struggles.

Ziegler is a teacher to those who encounter her, DiMagno says: “She speaks about seeing her as a person rather than a patient.”

To schedule an appointment to discuss pancreatitis or digestive issues with a Michigan Medicine gastroenterologist, call 888-229-7408.