I had severe acute necrotizing pancreatitis in Sept '13. Spent most of 3 months in the hospital and had to be transferred to a larger city because the local Drs couldn't handle it. One Dr in the big city said she had never seen anyone survive before me.Although we each have our own story I am happy to share mine with you. I did recover and once the immediate pancreatitis was resolved and the pseudocyst drained I had my gall bladder out. I had an orphan bile duct which refused to stay sealed and leaked bile into my abdomen so I had to have major surgery to correct that. Have continued to have problems. Now am classified with chronic calcific pancreatitis.

I continued to have abdominal pain so the GI Drs did an EUS which discovered a severe stricture in my pancreatic duct with a mass beyond the stricture. And the tail of the pancreas is swollen about to burst. They have tried three times to place a stent and take a biopsy of the mass via ERCP but have failed. They cannot get thru the stricture. They have recommended a distal pancreatectomy and I just consulted with a surgeon.

The surgeon is reluctant to operate because I have so much scar tissue from all the above and it would be a real challenge to get the pancreas out. Plus, an MRI showed many dilated blood vessels in the area which increases the risk of hemorrhage. So he has ordered a new CT plus some blood work to try to determine what the odds are that the mass is cancerous.If it does not seem to be, he will not want to operate, says the tail of the pancreas will eventually atrophy and just shrink away as it is no longer functioning. But in the mean time I have almost constant abdominal pain, plus bouts of nausea and vomiting.

Bear in mind, they all say mine is a very unusual case, but I think all of us who have survived necrotizing pancreatitis are unique. You can't compare my story to yours. You may do fine with an adjusted diet and care. I was already a T2 diabetic and on insulin before this happened so I am now working closely with my endocrinologist to adjust my insulin doses to manage the new situation. But I know it can be a comfort to know you are not the only person who has gone thru this. Message me if you ever want to reach out.

Hello this message is for bookwiitch and megwyn.... I know it's been a couple of years since you posted however I was hoping to get an update from you as I'm having terrible difficulties getting a proper diagnosis for my ongoing pancreas problems. Recently diagnosed with chronic pancreatitis based on my lipase levels and pain and weight loss I am beside myself as to how to achieve some quality of life. I would deeply appreciate hearing back from either one of you as to how you're doing and if you indeed saw a pancreas specialist. Thank you so much in advance for your time and I hope this post finds you feeling much better!

Hello Bufalowgrl. Have you had a EUS done. This was the most useful test in determining my chronic pancreatitis. It took over a year to get a final diagnosis. I had never had acute attacks at all but once it turned into chronic pancreatitis I have had real struggles. Huge weight loss so I was put on a feeding tube in August. I live with daily pain and often nausea. I take pancreatic enzymes. They don't help with the pain but do help me be able to eat a little. Everyone's experience seems so different but the one thing everyone seems to have in common is pain that affect our quality of life. The main thing that gets me through my days is prayer. I am new to this site but it looks to be helpful to be able to communicate with others who struggle with this chronic condition. I too would be interested to know how bookwiitch and megwyn are doing. My prayers are with them and with you also.