Dec 28, 2016 Latest post:
Jun 21, 2017
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My story can be traced back to my late teens when I began to have occasional bouts of upper abdominal pain that would land me in the ER with doctors scratching their heads. In 1995 the pains were so severe doctors at Mayo Clinic Rochester performed an ERCP with a partial sphincterotomy giving me my first confirmed case of acute pancreatitis. A few days after I was discharged from a week in the hospital they removed the gallbladder. Over the next 19 years I would experience intermittent severe upper abdominal pain that would again land me in the ER for pain meds. The story takes a turn for the worse in 2014 when the pain was so severe I was admitted for observation for 3 days then sent home. I turned up in the ER the next day completely jaundice. Another ERCP revealed 3 stones blocking my Common Bile Duct and occluding my pancreatic duct.
From November 2014 through August 2016 I had multiple minor surgeries to open up the Common Bile and Pancreatic Duct to no avail. I had upper and lower endoscopy's, multiple CT's, MRI's, Endoscopic Ultra Sounds, MRCP's and more tests than I care to recall to finally get to the bottom of all this painful trouble. I was hospitalized for over 50 days with the average visit to the hospital being 8 days. Dr. Martin Freeman promised to never give up on finding out what was wrong and he continues to help me work to find the path back to good health. In September I was put on tube feedings as I had not been able to eat or drink without pain and nausea and was losing considerable weight (about 50 pounds). I have a love hate relationship with my tube, but it has allowed me to maintain my weight and gain strength leading up to my surgery. In October Dr. Freeman advised we we had exhausted all but one treatment, a radical surgery that has good results in qualified patients. In November we went through a 2 day evaluation to see if I was a candidate for the Total Pancreatectomy and Islet Auto-Transplant (TP/IAT). Not only was I chosen by the multidisciplinary team , they fast tracked my case moving from a date in February to December 28th.
While many who get Chronic Pancreatitis don't know the origin of their disease, we do know mine was caused by gallstones. One of my wishes for posting my story is that more people will come to understand this terribly painful and devastating disease. While the TP/IAT is not a cure and I have 2 other diseases that will probably continue to give me trouble (GERD & Gastroparesis) , our hope is that I get off opiate pain medicines and have an increased quality of life -- possibly even returning to work! The optimistic outlook is to get back up to 80% of my old normal level of activity. I've been out on employer based disability since August 2016 so you might imagine how exciting this sounds to me.
The surgery itself is intense and takes about 12 hours with up to a 2 week stay in the hospital followed by weekly visits to the U of M for follow up several months then weaning to annual visits for life. I will initially need insulin and will be considered a modified Type 1 diabetic. If the islet cell transplant takes, I may not have to use insulin at all but I will be diabetic. Yes diabetes is a terrible disease but from where I'm sitting it is far more manageable than dying with chronic pancreatitis.
I am filled with hope for a healthy new year and am grateful to my team at the U of M as well as the incredible support network we have cheering us on. Thank you for being a critical part of my journey to good health.