10/10 Finding Balance
The pain that Rachel Smith felt just under her breastbone was like no pain she had ever felt before. It was debilitating pain; pain that caused her to drop to the floor unable to stand pain. On a scale of one to 10, it was a 10.
That’s how Smith remembers her first pancreatitis attack. It landed her in the hospital for six days.
Doctors diagnosed her with acute pancreatitis and sent her home on a liquid diet, pain medications and instructions to eliminate all alcohol consumption.
But the pain continued. One week later, Smith was back in the hospital for eight days, then two weeks later for nine days and then another two weeks later for two weeks. During this last visit, she was put on a feeding tube. She was not allowed to eat or drink anything as doctors tried to determine the source of her pain. Her doctors were stumped. They tried more pain medications. One suggested removing her gallbladder. But even more frustrating, no one seemed to listen or take the 22 year old seriously. It was a frightening and frustrating time, Smith says.
Everything changed, however, when a friend of Smith’s mother suggested she visit The Nebraska Medical Center’s Comprehensive Pancreatobiliary Disorder and Autologous Islet Transplantation Clinic. The only clinic of its type in the region, the clinic specializes in non-malignant pancreatic and biliary diseases and offers a full array of diagnostic and therapeutic modalities. The most common conditions the clinic treats include benign neoplasms of the pancreas as well as acute and chronic pancreatitis.
The clinic brings together the expertise of gastroenterologists, endocrinologists, surgeons, nutritionists, nurse coordinators and social workers who collaborate and develop a personalized plan of care for each patient. “This is important as these patients have complex problems that can be very difficult to manage and they can often get left behind,” says Luciano Vargas, MD, a surgeon with the clinic who specializes in diseases of the pancreas, liver and kidneys as well as liver, pancreas and intestinal transplantation.
About 80,000 cases of acute pancreatitis occur in the United States each year. While many cases will resolve on their own, about 20 percent of cases are very severe and can be life-threatening. If the pancreas becomes scarred during an attack, the damage will continue, worsen and progress to chronic pancreatitis. “Patients often have chronic pain, frequent flare-ups and may need repeated hospitalizations,” says Dr. Vargas. “It can become a debilitating disease. Many patients aren’t able to work because the pain is so severe and they may end up on disability.”
The condition is often related to smoking, alcoholism, gallstones or anatomical abnormalities, with smoking being the greatest risk factor.
There is no cookie-cutter plan for treating acute or chronic pancreatitis. Patients are different in how quickly the disease progresses, their pain levels and frequency of episodes and how well they respond to pain medications and other treatment modalities, notes Dr. Vargas.
Together, Dr. Vargas and his colleagues bring a wealth of experience and expertise in diseases of the liver and pancreas that allow them to draw from three distinct perspectives to provide a comprehensive plan of care and the right treatment solutions for each patient that is concise, well thought out and employs a very efficient use of the patient’s time.
The medical team includes Dr. Vargas, Shailender Singh, MD, a gastroenterologist who specializes in diseases of the pancreas; and Brian Boerner, MD, an endocrinologist. Dr. Vargas is an assistant professor of surgery at the University of Nebraska Medical Center (UNMC). Dr. Vargas attended medical school at the University of Texas Health Sciences Center in San Antonio; completed seven years of general medicine surgery residency at UNMC; followed by fellowship training in abdominal transplantation.
Dr. Singh, an assistant professor of gastroenterology at UNMC, attended medical school and completed an internal medicine residency at Sharma Postgraduate Institute of Medical Sciences, MD University in Rohtak, India; an additional internal medicine residency at Mercy Catholic Medical Center in Darby, Penn.; followed by transplant hepatology and gastroenterology fellowships at the University of Kansas Medical Center in Kansas City; and an advanced endoscopic fellowship at UT Southwestern Medical Center in Dallas, Texas.
Dr. Boerner, an assistant professor of internal medicine at UNMC, completed medical school, residency and an endocrinology fellowship at UNMC.
Management of the chronic pancreatitis starts with diet restrictions, the elimination of alcohol and smoking, pancreatic enzyme replacement and prescription pain medications to control the pain. If this does not relieve symptoms, other approaches are explored including several endoscopic approaches and surgical procedures.
“We are unique in that we can provide the entire spectrum of care options from medical management to endoscopic and surgical care options,” says Dr. Vargas. “Each case can be very different as to what the patient’s needs are and how the patient is going to respond to various treatment options. We’re here to help patients manage the disease through their entire lifetime.”
When Smith came to the clinic, she met with Dr. Singh. Smith’s fears gradually faded and were replaced with hope. “He sat down with me for an hour to go over everything that had happened to date,” she says. “He immediately said that I had chronic pancreatitis and that he wasn’t going to let me go through this alone. He said that he would try everything possible to help me. If I still was having pain after 5,000 tries, he would try 5,001.”
Dr. Singh’s confidence and reassuring words were just what Smith needed.
One of the first things that Dr. Singh did was to provide Smith with a firm diagnosis. He performed an endoscopic pancreatic function test with endoscopic ultrasound, the most accurate and sensitive diagnostic test available for pancreatitis. The diagnostic test is available nowhere else in the region. Dr. Singh received specialized training in this procedure during his advanced endoscopic fellowship.
“Chronic pancreatitis can be difficult to diagnose and is often misdiagnosed as well as underdiagnosed,” he says. “A CAT scan or MRI can look completely normal and an ultrasound by itself is a very subjective test that depends on the experience of the physician as to whether you will receive a correct diagnosis.”
Dr. Singh gave Smith the courage to keep fighting and to continue with school at the University of Nebraska at Omaha (UNO) where she is pursuing a criminal justice degree. Initially, she took all online courses but this last semester she signed up for a classroom course so she could experience campus life again. The pain is still there, but it has subsided and is at a more tolerable level now. The fact that Dr. Singh continues to work with her and give her hope, gives Smith the will to keep fighting.
“I was lost until I found Dr. Singh,” she says. “He gave me peace of mind. He helped me see the light when I thought that there was no light. The fact that I don’t get ‘I don’t know’ anymore, has really helped bring my stress level down.”
“Rachel is unique in that she is so young and that she transitioned from acute to chronic pancreatitis in such a short period of time,” says Dr. Singh. “When I first saw her, she was spending a lot of her time in bed and hardly functioning at all. She has really progressed since then. We are continuing to work with her in adjusting her pain medications to get her pain at the lowest level possible.”
Patients may also be candidates for several endoscopic procedures performed by Dr. Singh to help bring pain relief. One of these is the endoscopic ultrasound-guided celiac plexus nerve block. The procedure involves injecting a combination of long-acting local anesthetics and steroids into the celiac plexus under endoscopic ultrasonography guidance to reduce pain. The procedure has been shown to bring relief to about 50 percent of patients. Unfortunately, the procedure did not bring relief to Smith.
Dr. Singh also performs an endoscopic procedure called endoscopic retrograde cholangiopancreatogram (ERCP). This procedure uses a flexible, lighted scope with X-rays to examine the tubes that drain the liver, pancreas and gallbladder. The procedure can be used to remove gallstones or to open strictures in the bile ducts with stents.
Partial removal of the part of the pancreas that is scarred is a surgical procedure that may be considered if all else has failed.
If patients continue to have debilitating pain and all medical and endoscopic approaches have been exhausted, the last and final resort is removal of the pancreas (pancreatectomy) with an auto islet cell transplant, a procedure performed at only a few medical centers in the country. The procedure involves removing the pancreas, then harvesting the islet cells from the pancreas and transplanting them back into the liver. This allows the liver to take over the pancreas’s job of producing insulin and prevents a patient from developing diabetes.
“The liver is just housing the islet cells,” explains Dr. Vargas. The islet cells have just changed zip codes if you will. They were in the pancreas, now they’re sitting in the liver.”
The auto islet transplant procedure is considered a superior option to a pancreas transplant as it eliminates problems with rejection and other complications that can occur with transplantation.
Dr. Vargas says the surgery can literally change a person’s life.
It gave Charlene Stehlik her life back. For more than 20 years, Stehlik learned to live with chronic abdominal pain. Then several years ago, the pain become so excruciating that Stehlik says “there was no living with it anymore. I was curled up in a ball, unable to function. I had five grandchildren and I was unable to play with them.”
When Stehlik came to The Nebraska Medical Center for help, doctors determined that Stehlik was a candidate for a pancreatectomy with an auto islet cell transplant. “I was scared, but I was so miserable,” she recalls. “If it could give me back my life, that’s what I wanted. Today, I’m pain-free. My energy level is back. I’m doing everything that I did before only with no pain associated with it.”
Stehlik suffered from an anatomical problem called pancreatic divisum in which the two ducts of the pancreas fail to fuse together before birth. Over the years, she had exhausted all medical, endoscopic and surgical options. Dr. Boerner now consults with Stehlik and helps her control her insulin needs. “Some patients will still need insulin replacement after the transplant, but it is much easier to control than if we removed their pancreas alone.”
Stehlik says she’s living “a new normal. It’s what normal should have been for me for years,” she says. “But now it is normal.”
Katie Eastman had suffered excruciating pain for five years. She sought help at other hospitals, but no one could figure out the source of her pain.
“It was horrible pain, debilitating pain, severe nausea, knock you on your knees pain,” she recalls. “I’ve been through labor and this was far worse. It was constant — all day long. Eating made it worse.”
Doctors at another local hospital thought it was her gallbladder and removed it. When Eastman’s pain didn’t go away, they referred her to The Nebraska Medical Center where she was diagnosed with chronic pancreatitis. This would mark the beginning of Katie’s recovery.
“They took me in with open arms,” she says. “They got to know me as a person, not just as a patient.”
When Eastman heard the words transplant, she admits she was scared. But her fears quickly subsided after talking to her surgeon. A pancreatectomy and auto islet transplant now has Eastman living pain-free.
“I felt very comfortable here,” she says. “The surgeon probably spent a good hour answering my questions and my parent’s questions. Everything went very smoothly. I can’t even imagine a better experience. When you’re in the hospital and you’re sad to leave, you know you’ve had a good experience.
“My husband has his wife back, my children have their mom back and I got my life back.”
Unfortunately, not all patients end up with total pain relief. “There is no one panacea for all patients,” says Dr. Singh. “Many patients will deal with this condition for the rest of their lives. Our goal is to help them manage their pain at a level that is tolerable and that allows them to function normally. We are a place that these patients can go to and know that they are receiving the most advanced treatment options available anywhere. We are in it with them for the rest of their lives.”
Smith is still very early in her treatment process. But the clinic has given her support and hope that she, too, can someday be pain-free.
On a scale of one to 10, Smith says she rates the care she has received at The Nebraska Medical Center a resounding 10.