A Personal Lesson in Suffering…
My life was just starting to look like what I had imagined… enjoying being a wife, living in a cozy house, raising three beautiful children and taking much pleasure in the gift of motherhood. Then everything changed... Little did I know that slowly my life would begin a downward spiral, leading me and my family through a real lesson on personal suffering and showing us just how thin the line is between life and death.
It started right around the time I turned 30, when I began having chronic stomach problems and abdominal pain. Although I hardly ever went to the doctor, I knew I needed help. I saw a GI off and on who started treating me for reflux, then as symptoms persisted, ran many tests over the period of a couple of years: x-rays, CT’s, MRI's, HIDA scans, etc. It was finally decided that the culprit was a diseased gallbladder, so in 2005, it was removed.
Unfortunately, within weeks of surgery, I had an extremely severe attack of pain that took my breath away and my husband had to call an ambulance. It felt like I was literally being stabbed or electrocuted. Something was very wrong, but the doctors found nothing. Every time I would get to a doctor the symptoms would subside, although leaving me very lethargic and exhausted. Things would calm for a bit, but every few months or so, without warning, the excruciating pain would hit again. This began a very long battle - over 2 years of fighting - to find out what could be wrong. I lived with fear of when an attack would hit again. It would send my whole digestive system into turmoil. I went to many doctors and had many tests when finally a GI mentioned the PANCREAS.
I was sent to MUSC in Charleston at the very end of December of 2006 for a test called an ERCP. This is only done by very experienced doctors due to the careful technique and complication of the procedure. A scope is inserted through your esophagus, stomach, and duodenum (the first part of your intestine) until it reaches the area of your biliary tree and pancreas. It was the first time they discovered that I had a congenital anomaly of the pancreas called Pancreatic Divisum. The pancreas was left "divided" into two sections when formed from birth. The pancreas usually drains from one main duct, but in my case, a tiny minor duct (minor papilla) tried to drain the majority of the pancreas. They also found that I had something called Sphincter of Oddi Dysfunction - SOD. This is where the sphincter (duct of the pancreas) does not work properly. They performed the first sphincterotomy, cutting my duct to allow it to drain more efficiently.
After that sphincterotomy, I got better for nearly two years! We thought that was the end of my medical troubles. Then, without warning, I began to go downhill and experience pain again. I was sent back to MUSC in January of 2009 and they performed another sphincterotomy, finding that the duct had scarred and nearly closed. Unfortunately the relief only lasted months, and to make a long story short, the cycle continued for a total of four sphincterotomies. I lost so much weight that I had to have a feeding tube implanted into my abdomen. Even with the GJ tube (feeding tube), I continued having pain from the smoldering pancreas, and other complications crept in. It was a very long, hard summer.
Quickly, I realized that my life had definitely changed. It was spiraling out of control, and it scared me! I was no longer able to care for my kids, and my husband and family had to take over all of my usual duties. I had been in denial, not accepting the diagnosis of chronic pancreatitis – not accepting that this was not just going to get better – not accepting the battle ahead. But I also couldn’t accept that this was going to be my life forever. I was now on constant heavy pain medicine, nausea medicine, etc., and unable to drive or even get out of bed most days. My family was suffering with me, my children not able to have their mom at their ballgames, their piano recitals, their school functions. Life could not stay this way! Besides, I couldn’t eat and I grew weaker every day. I was in for the fight of my life, but I had my family by my side and many faithful friends “praying” me on.
I researched, read, and delved into any information I could gather about pancreatic issues. I must say, there is not a lot out there besides the usual mention of pancreatic cancer – still typically a death sentence. I was grateful to find a support group online that led me to others that seem to experience many of the symptoms I had… even many that had pancreatic divisum and who were experiencing continued pancreatic attacks and pancreatitis. I read about a groundbreaking surgery called the Total Pancreatectomy and Islet Auto Transplant. This is the complete removal of the pancreas and a transplant of the islet cells into the liver, allowing the patient a chance of not becoming a brittle diabetic. I began to schedule a consultation with Dr. Sutherland in MN (the doctor who pioneered this new surgery). In the meantime, my doctor at MUSC recommended the exact same surgery and informed me that they, too, had started doing this rare surgery just in the past year. He set up an appointment for me to meet with their pancreatic surgeon. I would be able to gain knowledge and insight from two pancreatic specialists as to whether or not this would be my only, and last, option. After both consultations, it was concluded that the enormous surgery would be my only way “out”. It sure wouldn’t be easy, as it is explained as the largest surgery a person could have. It would mean a long hospital stay, with many possible complications, a stay in the ICU, a large incision and many tubes to wean off of after surgery. It would be a very long year of recovery. It could also bring a long host of complications. BUT, this would mean no more attacks of excruciating pancreatitis, a condition that causes more and more damage, and even a chance of death. I had to choose the surgery.
It happened fast, within weeks really, when I was told there was nothing more they could do except this surgery to the time of the actual day of the TP/IAT. But it was the longest period of my life. I spent many days in denial, unable to think and prepare for what was looming. I was scared more than ever! I was scared for my family, and they were terrified. On January 24th, 2011, I became MUSC’s 49th TP/IAT patient. I of course don’t remember anything of the first day and very little of the first few days in ICU. I had lots of bleeding, needed blood transfusions and platelets, had some breathing problems, and of course was in a lot of pain. There are many complications from having such a huge surgery, but slowly I progressed; and after a week in ICU, and almost another week still in the hospital, I was finally discharged. Things were very difficult after I got home, and I continued with new complications of pneumonia, then C.Diff. (an intestinal bacteria). I dropped down to only 84 pounds. It was a true battle. As I write this, I am only three months out, and I am still on the long road to recovery. Although I continue to struggle with digestive issues, gaining my weight back, finding the balance of enzymes to take with every bite of food, and working daily on the puzzle of my surgically-induced diabetes, I am eating and not in pain. I am happy to have the chance of one day being able to live life fully again. No one can really say what the outcome will be many years down the road. This surgery is still so new. But for now, I am guaranteed to never have pancreatitis again! No more E.R. visits to treat a severe attack of pain that literally takes your breath away. The fear of that pain is gone - the fear that has kept me from living my life, “taken away” a wife and mom, and shaken a faithful ground. I will always battle complications left from that powerful organ - but I have faced the battle, and I have fought back.
Suffering is a mystery, and on the darkest days when you cannot imagine one more breath to flow through your broken body, and the only light at the end of the tunnel is a freight train coming straight at you, it can seem that all hope is lost. Through all of this, I can only say that I am here because of God’s will, and I can only hope in the everlasting life of Heaven, where suffering will be no more.
There is no cure for pancreatitis, and very limited treatments exist. This leaves many people to suffer endlessly. Living with a diseased pancreas can be deadly. It makes food your enemy and causes pain that pierces through your body. Please take the time to learn more about this crucial organ, and please support pancreatic research and awareness - So many advances need to be discovered and so many lives need to be saved.
Watch a video memoir here.
(written April 2011)
Spreading Awareness for Pancreas Research