Hi @christie4re
Sorry to hear you are going through all of this. I can certainly share my experience if it helps.

I had a total pancreatectomy about 6 years ago after finding multiple pancreatic NETs. As it turns out, I happened to win the genetic lottery and have MEN1 that I did not inherit from my parents. (yay for me!)

Since surgery, I manage the resultant diabetes with an insulin pump (Tandem x2) and a CGM (Dexcom G7) and Creon for digestion (36000 - 3 with meals and 1 with snacks.)

All in all, I lead a fairly normal life albeit I do try to exercise regularly, watch fat intake and maintain a lower carb diet. My last A1C was 5.7 so the blood sugar is manageable if you watch what you eat. At the time, it seemed insurmountable to me but I took it day by day and here I am almost 6 years later.

I had my surgery at Cleveland Clinic and am still followed by them to this day. I recall the comment that the HPB surgeon made to me at the time - it's not necessarily the surgery that is important but more the aftercare since you have to manage juggling digestion, diabetes, insulin rates, and carbs at the same time. The key for me is to use extended boluses when eating to account for the carb/fat digestion curve. Happy to help if you have any questions or need an ear. Take care and God Bless
-Matt