After living 20 years with the constant pain of chronic pancreatitis, Tammy Cox said the decision to have a total pancreatectomy, or surgery to remove her pancreas completely, was an easy one, despite the risks.
“It was fairly easy for me, just because of the number of years I’ve been in pain, and the number of doctors I’ve seen,” she said. “It just seemed very logical, like this could be the answer.”
Cox, 43, a teacher’s aide from Springfield, Ill., who works with special needs students, suffered from pancreatitis, or inflammation of the pancreas that causes pain in the upper abdomen, along with nausea and vomiting. She first started having symptoms in the fall of 1995, and the following spring, she had an endoscopic procedure to insert stents into the pancreatic ducts to reduce the inflammation. This provided relief for a few years, but the inflammation returned and she battled constant, severe abdominal pain for the next several years.
None of the doctors she saw during this time had an answer until, searching on her own, Cox found Andres Gelrud, MD, MMSc, associate professor of medicine at the University of Chicago Medicine. Gelrud, a gastroenterologist who specializes in treatment for patients with recurrent acute and chronic pancreatitis, offered a solution that would cure Cox’s pain, and tap into a team of experts to avoid a daunting potential side effect.
Gelrud worked with Cox to assess her condition. The first order of business was a feeding tube; she had been in so much pain that she wasn’t eating well, and this gave her more energy to continue treatment. Genetic testing revealed that her pancreatitis was likely caused by a mutation and standard treatments were unlikely to stop the pain, leaving one option: a pancreatectomy.
This procedure comes with a major caveat though: Without a pancreas, the body can no longer produce insulin on its own, and after the surgery the patient becomes diabetic. In this case, however, Gelrud turned to Piotr Witkowski, MD, associate professor of surgery and Director of the Pancreatic and Islet Transplant program.
Witkowski specializes in transplanting islet cells, which produce insulin in the pancreas. In some cases this is done using islets from deceased donors, for patients with severe or “brittle” type 1 diabetes who are unable to control their blood glucose levels through standard means. This procedure is like any other organ transplant, and patients have to take anti-rejection medications the rest of their lives.
For patients undergoing a total pancreatectomy, Witkowski and his team are able to perform islet autotransplantation, in which they retrieve the islets from the patient’s own pancreas after it is removed and reinfuse them back into the liver. The islets continue producing insulin and help the patient avoid developing diabetes. And because the islets are from the patient’s own body, there is no need for anti-rejection medication.
Witkowski said this combination procedure opens up a new possibility for patients with pancreatitis.
“They’re so desperate from the pain, many of them are willing to have the pancreas removed even if they know it will make them diabetic,” he said. “Now this is a good option to help with the pain and keep them off insulin as well.”
In June 2015, Jeffrey Matthews, MD, the Dallas B. Phemister Professor of Surgery and Chair of the Department of Surgery, performed the procedure to remove Cox’s pancreas. Once removed, Witkowski prepped the organ to retrieve the islets by placing a tube in the main pancreatic duct. The pancreas was then taken to the islet isolation laboratory nearby on campus, where Witkowski’s team injected it with an enzyme that literally digests the organ, breaking down the tissue into a liquid containing the islets and other digestive cells. The technicians then separated the islets from these other cells, and prepared a solution that could be infused into the liver.
Meanwhile, Matthews was completing the surgery to reconstruct the digestive system minus the pancreas. Once the islet infusion was complete, he closed up to complete the procedure.
It was a success on both fronts—a month after surgery, Cox was pain-free and didn’t require insulin either.
She was the 20th patient to undergo this dual procedure at UChicago. So far 10 of the patients have avoided insulin completely, while the others do require some to maintain blood glucose control. Witkowski said the success of the islet transplant depends on the condition of the pancreas and how long the patient had been suffering from pancreatitis, which can determine how many islet cells can be isolated. In Cox’s case, the total success was unusual, since she had been battling the disease for so long.
“She’s an example of a real success. It’s so spectacular because she had been suffering for 20 years,” Witkowski said. “This the best time of her life. She shouldn’t have to live in constant pain.”
Cox said that despite the risks, she was confident she was making the right decision.
“All of the doctors—Dr. Gelrud, Dr. Matthews, and Dr. Witkowski—were very straightforward about what the outcome of the surgery could be, and the likelihood that I could need insulin,” she said. “Everything they outlined that would happen through the surgery and recovery was very true. I feel like they explained it well, and they were honest and straightforward about what the experience would be like.”
Now that she has recovered, pain-free after 20 years and insulin-free as well, she’s ready to enjoy time with her family and return to work this fall.
“Before surgery I was missing a lot of what my family was doing. I would come home from work and just be done. I wasn’t able to keep up with them,” she said. “I feel confident that I will be able to do that now.”
Video from Tammy Cox thanking Drs. Gelrud, Witkowski and Matthews.