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Edmund’s Story

My pancreatitis journey began in 2017; although at first – I didn’t know it was pancreatitis. It began with a stabbing pain that shot through my back. Since I’ve had four back surgeries, I thought the pain could be orthopedic in nature. I saw my orthopedist and began by getting lumbar shots, acupuncture and physical therapy. Obviously, this was not the cure. I began to lose weight and still was in a tremendous amount of pain. Next, tests were ordered abdominal X-Rays, CT Scans , MRI’s, EGD and an EUS – no cancer (thank God). However, every couple of weeks I had to go to the ER and Urgent Cares when I could not handle the pain. Morphine, Dilaudid and Ativan were the only cocktail that would give me any relief. After being treated as a drug seeker, multiple tests, scans, and office visits,  my gastroenterologist said, “This is it no cure for pancreatitis” “NPO and pain meds.” Nothing more can be done. At that point I had gone from 188 lbs. to 128 lbs. (6 mo. time). My spouse and I started looking into Center of Excellence facilities and narrowed it down to John’s Hopkins or UCLA.

I decided to give UCLA a try in January of 2018; my first appointment was with Dr. Raman Muthusamy UCLA’s Liver Institute. He began by asking me to describe the pain/symptoms within 10 minutes he was finishing my sentences. He is a large man in stature and with his large hand on my shoulder assured us that “We can help you here.” It was as if we had been speaking a foreign language and now found an interpreter! He ordered an EUS to see if he could give me a gastric nerve block; within two weeks I was in the OR. Turns out that I had multiple golf-sized calcification stones in my pancreas; he couldn’t even do the gastric nerve block. He then called in Dr. Tim Donahue where and he and his surgical team talked to us about Frey Procedure vs. Whipple.  I was a candidate for the Frey procedure and less than two weeks, was in surgery. After a 7–8-hour operation, Dr. Donahue scooped out the calcification, re-routed, and enlarged some ducts and other surgical terms. He said “this was the worst case I have had so far” but we got everything. Can you imagine waking up in recovery and already feeling 80% better? I was no longer grey, could sleep, and began to eat again!

This month is my 4-year anniversary – I have changed my diet to a Mediterranean and/or plant-based diet. I avoid beef and pork products and fried foods. My weight is back up between 154 lbs. and 158 lbs. I still have some flare up’s which are predominately handled by meds and eating lightly.

I am forever grateful for this chance!  However, I am still frustrated there is no cure pancreatitis, the stereotyping  (didn’t get pancreatitis by alcohol or drugs) and minimal  awareness or support groups outside of those with pancreatic cancer. Hopefully, my story will help someone else or provide an outlet for a much-needed support group. No one really understands like someone who has the same life sentence.