By Merita Bodin

My name is Merita Bodin. I am a former sufferer of chronic pancreatitis. I had a life before pancreatitis, then I lost it for a while. Now, after my pancreas was removed, I have it back!

My life before pancreatitis began some 36 years ago on a cold December morning in Macedonia (Former Yugoslavia). Born healthy and energetic, I became an adventurous, smart teenager with big dreams and high hopes.

My happy teenage life was disrupted, however, by the war in Yugoslavia. My family had two choices: stay and likely die, or flee and survive. My mother, my idol, my rock, wanted only the best for her three girls. So, we fled to Sweden, now my wonderful homeland. At first I rebelled at living in a new country, learning a new language, and having to make friends. But despite our difficulties, one phrase my mother used stays etched in my mind, “As long as we are alive, healthy, and have each other, we will conquer the world.” One amazing mother! Yet, the meaning of this phrase did not fully sink in until illness struck me in the 2004, six years after my husband and I moved to the United States for his work and my studies.

It started with abdominal pain, nausea and vomiting, symptoms I initially attributed to stress. But the pain got worse. I saw my local gastroenterologist who blamed my gallbladder. A surgeon removed it, but my troubles did not disappear. In May 2005, my symptoms returned and the pain became almost unbearable. Elevated pancreatic enzyme levels in my blood indicated pancreatitis, an illness I knew with my background as a medical technologist to be very bad. I was put on a low fat diet in hopes that the condition would resolve, but it did not and the pain escalated.

In June of 2006, my gastroenterologist did an endoscopic retrograde cholangiopancreatogram (ERCP) and discovered an abnormality of my pancreatic ducts that was probably causing the pancreatitis. He referred me to a gastroenterologist at a university hospital in Florida for another ERCP but this time with a sphincterotomy and stenting of my pancreatic duct.

I went in for the ERCP on August 24, 2006, optimistic and ready to get my life back. Afterwards, I was assigned to Room 4, a number I had always considered lucky, but after that exceedingly painful night, I did not believe it any more. (Although, if you ask me today, I still believe it is the luckiest number one can have, since that failed procedure ultimately led me to Minnesota where my life was changed inside out.)

That night, I woke up with tremendous pain and could not breathe. A surgical team was at my bedside. I looked at my new gastroenterologist for an explanation. He was visibly upset with tears in his eyes. My heart almost stopped. With an almost shaky voice, he told me that I had to go to the operating room immediately because my duodenum had been perforated during the ERCP, causing peritonitis. I looked at my husband’s confused face, told him that I loved him, and was happy that he did not fully understand the severity of the complication and surgery, or my risk of dying. I went into surgery, scared but with complete trust in the team. The surgeons repaired the perforation, stapled the opening of the stomach to the duodenum, and made a new connection to a loop of bowel. I fought for my life, and against the odds, I SURVIVED! Despite all the surgical pain, tubes, blood transfusions, and all sorts of drugs, I pulled out of this crazy situation and retained the hope that I would get better. And, hope is sometimes all we have.

I have always been an optimist, never a quitter. I was determined to find a treatment that would abolish my pain. During my search, I had several other complications, including a pulmonary embolus and septicemia in July of 2007 from a line used to give me intravenous feedings (it hurt too much to eat). Yet, as before, I overcame these hurdles. 

Year 2008 arrived with the hope that my health would get better. It turned out to be the worst and then the best year of my life.

Because of my persistent pain, I visited another university hospital with prominent specialists in pancreatic disease. An ultrasound showed little evidence of chronic pancreatitis even though my constant abdominal pain, made worse by eating, was consistent with the diagnosis. I was in a shock. My body was telling me a different story and I would not give up. I went back to the gastroenterologist at the Florida hospital. He believed I had chronic pancreatitis and inserted a series of stents in my duct. Still, with each episode of acute pancreatitis, any diminution of pain was minimal and transient. By October of 2008, I had reached rock bottom, barely able to stand the pain, and unwilling to live the way I lived on daily narcotic analgesics.

With the constant hope that there was a definitive treatment for this miserable condition, I revisited my local gastroenterologist. He said the only thing left to do was to surgically remove my entire pancreas, an operation that would cause diabetes unless surgeons could salvage and inject the insulin producing islet cells back into me. He explained that there were very few medical centers in the world where this was done. 

I instantly saw that I had to do this – have the root cause of my pain removed – even if it meant getting diabetes. I asked him to send me to BEST of THE BEST because I strongly believe we all deserve the best. He sent me to University of Minnesota Medical Center in Minneapolis where the operation, total pancreatectomy (TP) and islet auto-transplantation (IAT), had been invented several years before by surgeon Dr. David Sutherland.

I met Dr. Sutherland in November 2008, who, by the grace of God, performed the MIRACLE of abolishing my pain. As soon as I spoke to him, I was at peace. I knew that my health problems were about to end and my new life journey was to begin. He instantly understood my problem and I absolutely sensed that he and his team knew what to do. He regularly saw patients like me with chronic pancreatitis whose pain persisted after duct drainage procedures.

The decision to do the surgery was one I had to make. If I lived one year or 30 years after the surgery, I would have won the battle because my life at that point was not a life I would wish on anyone. Three days after the consult, Dr. Sutherland did the surgery. On November 14, he removed my entire pancreas and extracted and injected the islet cells into my liver, where they now function as if he had never removed them.

On the morning of the surgery, Dr. Sutherland was at my side before I went to sleep. I trusted the team, and knew when I awoke I would have control to fight for my recovery, and fight I did. I had to go through a second surgery to stop bleeding from the heparin I was given to prevent the fresh islets from clotting in my liver. But then it was over. I had finally WON!  It is not that I had conquered the world, but I did finally conquer the terrible pancreatitis, and I was on top of the world.

I am now pain free, the reward for being determined, driven, hopeful, optimistic, and never giving up in the search for the definitive treatment to restore my health and allow me to live a normal life – a life all human beings deserve and are entitled to. 

I do not have enough praise or emotion to express how grateful I am to Dr. Sutherland and the wonderful team at University of Minnesota Medical Center for giving me my life back. The war in Yugoslavia did not take my life away, nor did the pancreatitis. I did have this illness, but this illness never had me.

Thank you for giving me the opportunity to tell my story, and for reading my story. If it changes one person’s life, my purpose on this Earth has been served.