This painful condition can lead to malnutrition and diabetes.
A large gland located behind the stomach, the pancreas makes enzymes that help digest food and produces hormones called glucagon and insulin that control blood sugar. But sometimes the pancreas becomes inflamed or damaged, a condition called pancreatitis.
When this happens, it is harder for the body to digest food and regulate blood sugar, which can result in serious health problems such as malnutrition and a rare type of diabetes. Pancreatitis can cause debilitating pain, nausea, diarrhea and unexplained weight loss.
The condition can be caused by longtime alcohol use, stones in the pancreas, genetic mutations, high triglyceride fats in the blood and cystic fibrosis.
It can happen suddenly, called acute pancreatitis, or it may progress to chronic pancreatitis, when the pancreas stays damaged and does not improve or heal over time.
If you have chronic pancreatitis, your physician may try to treat your symptoms with medication for pain and to help with food absorption and vitamin deficiencies. If that does not work, a gastroenterologist may insert a small tube called an endoscope through your mouth to remove any pancreatic stones or place small tubes called stents in the pancreas to reduce pain. If neither of those options work, you may need surgery.
We talked to Chirag Desai, MD, transplant and pancreatic surgeon to learn more about surgical treatment options for chronic pancreatitis.
Determining if You Need Surgery for Chronic Pancreatitis
Surgery is considered after all medication and endoscopic options fail and the patient poor quality of life, chronic pain and repeated hospital admissions, Dr. Desai says. The next step is to determine what type of surgery is needed.
“First you look at whether the patient’s pancreatitis is in just one part of the pancreas or the entire gland, and are they making insulin?” he says.
If you need surgery for pancreatitis, your surgeon will determine if you are a candidate for a total pancreatectomy (pancreas removal) with or without an autologous islet cell transplant, a partial pancreatectomy or a specialized surgery related to draining the pancreatic duct.
Total Pancreatectomy with Autologous Islet Cell Transplant
In a total pancreatectomy with autologous islet cell transplant, or TPAIT, the surgeon removes the pancreas, harvests the cells it uses to make insulin (islet cells) and infuses them into the liver. There, the islet cells can produce insulin as they once did in the pancreas. “Autologous” means tissue is removed from and then reused inside the same patient.
If successful, the patient maintains a normal blood sugar level and doesn’t get diabetes—the outcome for about a third of patients.
The other two-thirds—especially people with a severely damaged pancreas—may still get diabetes, but it will be more manageable than a rare type of diabetes associated with chronic pancreatitis, called brittle diabetes or 3c diabetes, in which it is very difficult to control sugar levels.
“This procedure (TPAIT) will either prevent them from developing diabetes, or, if they do develop diabetes, it will be more manageable because they will be making their own insulin and not have to get it all through injections,” says Morgan Jones, MD, endocrinologist and diabetes specialist at UNC Medical Center. Human insulin is more efficient at regulating blood sugar than artificial insulin.
Insurance agent Beth Gainey had her first bout with pancreatitis in 2001 when she was 20. She continued to have pancreatitis on and off until 2010, when it became unbearable and she had part of her pancreas removed. Because she was young, her doctors did not want to remove her whole pancreas, which would cause her to get diabetes. She did well after surgery.
“It had been so long since I had been able to eat that I gained a bunch of weight,” says Gainey, 39. “But they told me that they couldn’t promise I wouldn’t have to go back and have my pancreas taken out later.”
In 2014, her pancreatitis came back. After trying enzyme tablets and other medications, her doctor referred her to Dr. Desai.
“At that point, my pancreas had started shriveling. I was sick and hurting every single day. I was malnourished; I just wasn’t eating because I was so nauseated. I had three kids and was still trying to go on and be the best mom I could, but it was a miserable life,” she says.
Tests showed she had enough islet cells to have the pancreatectomy with autologous islet cell transplant.
“I don’t have to take near the insulin that most people (who have their pancreas removed) have to take, and after the initial surgical pain, I’ve not had a day of pain since then. It’s been absolutely wonderful,” Gainey says.
Total Pancreatectomy
If a patient is severely diabetic, a pancreatectomy with autologous islet cell transplant is not an option because they do not have the insulin-producing islets to harvest. These patients just have a pancreatectomy.
While these people have to continue to manage their diabetes, “we have excellent resources for them, and the vast majority say they would do it again just to get rid of the very painful pancreatitis,” says Marilyn Hanson, MSN, RN, transplant nurse coordinator at UNC Medical Center.
Former early childhood teacher Melanie Wiles had her first bout of pancreatitis in 2016. After that, she was in severe pain nearly every day and was in the hospital every four to six weeks for pain. She had 10 endoscopic stents over eight months to remove stones and reshape her pancreas.
For Wiles, a diabetic for many years, a pancreatectomy was the only option.
“I looked at him (Dr. Desai) and I said, ‘Take it out. I can’t live like this anymore,’” she says. “I was in extreme pain. I wasn’t eating and was throwing up.”
Wiles had the procedure in September 2017, and today she’s off pain medications, her blood sugar levels are better than they were before her surgery and she enjoys time with her family again.
“I have a life with my family again,” she says. “This surgery gave me my life back.”
Partial Pancreatectomy and Pancreatic Duct Draining Surgery
If a patient has damage in only the head of the pancreas, which is the part closest to the stomach, or the tail of the pancreas, then the surgeon will remove just the damaged section. This is called a partial pancreatectomy.
Former painter Tony Capri, 59, had been in and out of the hospital for five years with bouts of pancreatitis. It turned out he had stones in his pancreas that had to be removed surgically.
“He had stones, including a very big stone in the pancreatic duct and in the pancreatic head, so we opened up the duct, removed the stones, removed the damaged part of the pancreatic head and then joined it with the intestine to drain it,” Dr. Desai says. “This is called Frey’s procedure, and it helps many patients who have stones and have not been helped by endoscopic treatment.”
Capri, who has other health problems including chronic obstructive pulmonary disease and a degenerative bone disease, says he’s feeling better and getting his strength back. He hopes to return to his favorite pastime of fishing soon.
If you have chronic pancreatitis, talk to your doctor about treatment options or learn more about the Chronic Pancreatitis and Autologous Islet Cell Transplant Program. If you need a doctor, find one near you.