Living Without a Pancreas

My name is Julie Bernal and I am here to share my story with hopes to raise awareness and offer hope to others. Over the years I have been diagnosed with Recurrent Acute Pancreatitis and Chronic Pancreatitis (CP), Sphincter of Oddi Dysfunction (SOD), Diabetes (Hypoglycemia), believed Ehlers-Danlos Syndrome (EDS) Hypermobility Type III and Dysautonomia (Autonomic Dysfunction), which also caused Inappropriate Sinus Tachycardia, Atrial Ectopic Tachycardia, Orthostatic Hypotension and Gastroparesis (Delayed Gastric Emptying). Since 2008 I’ve had fifteen surgeries/procedures and have been hospitalized and to the ER more times than I can remember. I’ve had many organs removed and my insides readjusted, have a power port to help with hydration and IV treatment, and a permanent cardiac pacemaker (placed after having a cardiac ablation to help with heart arrhythmias and low blood pressure).

It is believed my first pancreatic attack happened when I was child – when I first had issues with digestion and pain from eating fatty meats and food. Age five I learned how to adjust my diet. Then at 23 years old, I had an attack which lasted a month. I had no idea, but it was the start of my pancreas and sphincter of oddi problems. After having my gallbladder removed, biliary and pancreatic sphincterotomies, biliary balloon dilatation, ERCP three times, EUS twice and an MRCP; my sphincter of oddi dysfunction proved to be stable but proof of chronic pancreatitis was discovered. My pancreas function was slowed, the pancreatic branches were three times normal size and the duct within the pancreas was narrow causing the pancreas to digest itself.

So May 19, 2011, I underwent a major, life-saving surgery and transplant called total pancreatectomy with an auto-islet transplant (TP/AIT). It involved removing my entire pancreas and spleen, and transplanting my own pancreas islet cells. (And though many believe you can’t live without your pancreas, you can but there only a handful of facilities capable and qualified for doing this complicated and risky surgery.) They also removed the duodenum (the first section of the small intestine where the sphincter of Oddi is located), along with the pancreas bile ducts. A Roux-en-Y was performed and a Gastrostomy-Jejunostomy feeding tube (GJ-tube) was placed. My pancreas was taken to a lab where my islet cells were separated and harvested from my pancreas and then they were transplanted into my liver. This is done with hopes that the liver will generate insulin. I spent 12 days in the hospital recovering and three more weeks in an apartment (out of state) which was close to the hospital. I relied on my husband to care for me for those weeks. To read more on my recovery, read my blog post here.

Before getting my pancreas removed I lived with severe daily abdominal pain, nausea, vomiting of bile, fatigue, swelling in my abdomen, severe pain from eating, difficulty digesting food, weight loss, bowel issues and life was very hard. My diet had become very limited and many days I couldn’t even keep liquids down. And though I never liked being on medication, my doctors had to put me on narcotic pain medications because the pain and inflammation was so bad – so bad I required to spend many days stuck bedridden and too weak to stand. It was a feeling as if I had the flu everyday…along with the most unbearable pain. Though most would say I looked healthy, I was very ill with a disease that caused permanent damage to my pancreas. It felt like I was being beaten in my right rib and upper abdomen, and I was left feeling run down, weak and pale. I was living one day at a time just trying to survive. To learn more about my symptoms and history before having my TP/AIT, watch my YouTube video here.

As far as living without my pancreas, I will need to be on pancreatic enzyme supplements whenever I eat, for the rest of my life to make up for not having a pancreas. And living without a spleen, my body will have a hard time fighting off infection. So any infection can be very serious and will require antibiotics right away. My transplant worked well and I was able to come off insulin three months post TP/AIT. I still have to check my blood sugar levels about four-eight times a day due to some low blood sugars. But that is nothing compared to living with chronic pancreatitis or sphincter of oddi dysfunction. And though I am not perfect and still have other unrelated health issues, I truly believe my total pancreatectomy with an auto-islet transplant was a success and I don’t think I would still be here if I didin’t have it done. The surgery was done at the University of Minnesota Medical Center of Fairview, the leading facility for the TP/AIT. Currently they have performed over 400 TP/AIT. Dr. Pruett performed my surgery and I thought he was a GREAT doctor! I’ve been doing pretty well with the recovery and finally no longer have any pancreas pain and I’m able to eat again. I feel blessed to be alive! And I’m so thankful for the wonderful doctors, nurses and staff at the University of Minnesota Medical Center of Fairview for taking such good care of me and for saving my life.

If you or a loved one suffers from acute/chronic pancreatitis or sphincter of Oddi dysfunction, visit my support group page to find many great support groups. Let’s stand together and try to raise awareness of these horrible and disabling diseases. Together we can make it through this. To read more and to stay up to date with my current health, check out my blog. Thanks for taking time to hear my story.