Hi @asufloss - I am in my late 50's and had this operation 5+ years ago because I have MEN1 and my pancreas was covered with neuroendocrine tumors (PNETS). At the time of the surgery, they only knew that I had at least 4 PNETS, but subsequent to the surgery there were many, many more discovered and some were large enough that they encroached into my splenic artery and one of many lymph nodes nearby, that were also removed. I do not know your circumstances, but know that a lot of MEN1 patients may be facing similar surgeries in their future, to hopefully afford themselves a cure for their pancreatic lesions/tumors.

I had my surgery completed at Cleveland Clinic in Ohio by a large team of specialist surgeons and it took many, many hours. The first couple of days were the most difficult. I stayed a bit longer than a day in ICU but was only in my room for 4 days before being released. This is not atypical but perhaps not as common either. I was extremely motivated to get up, walk and get the heck out. I did not have a lot of pain after the first couple of days. The challenge was being able to walk around with 2 IV poles, an NG tube, and 4 IV's in both hands and arms. Anything you do with your dominant hand will end up in frustration. You will get very little rest with the numerous blood tests and IV changes. The first meal, days later will be heaven, best rice crispies I ever had.

The two biggest issues, once home, was handling my pancreatic-less diabetes and the pancreatic digestion challenges.

I did get a referral to see a doctor of pharmacy who helped me understand the nuances of an insulin pump/CGM (today's version of an artificial pancreas) as well as a nutritionist that can help you understand some changes you should make to reduce your carbohydrate load/fat content. I met with several of these people before my surgery. I learned that fatty meals will be your enemy for both diabetes and digestive management, even though you will be taking enzymes with every meal or snack. Your pump/CGM and your digestive enzymes will go everywhere with you as well as juice or glucose tabs and a glucagon emergency kit. Because you no longer have a pancreas your body has no way to reverse insulin lows that may occur so you will need a way to get sugar into your body, thus the need for tabs/juice. The kit is helpful for loved ones who may need to jab you if you are too low. (I fortunately have not had this problem but know if many Type 1 diabetics with a pancreas who have had to use the kit.)

The CGM application can be shared amongst loved ones on their smartphones to help you monitor your blood sugars and alert you to highs and lows. This can be very helpful in the early days as you try to remember you no longer have a pancreas to regulate these functions. Your pump yelling at you may be a clue as well. Unbelievably, I can say I feel naked if I don't have my pump by my side these days. I have found substituting lower fat meats for more of my meals helps with digestion and undesirable side effects. Having a spouse who helps prepare the many, many carb alternatives available today, helps tremendously. One thing others might not mention is that without a pancreas you may find that your kidneys could be vulnerable to additional protein/salts. I see a nephrologist twice a year for routine kidney monitoring because I also have parathyroid adenomas that I've had removed, they were/are hyper and cause kidney stones to form. Which is how I became aware that digestive issues can cause additional problems with kidney function, if not addressed. I complete 24 hour urine samples that have helped me to realize that high sodium diets (common in everyday American lives) further exacerbate issues with kidneys as they also bring along oxalates and calcium, making the kidneys work hard to filter. It is something to keep in mind. I am happy to answer more specific questions, if it helps. There is a lot to digest, so to speak. LOL You can lead a pretty normal life. You just have to spend time preparing for things and spontaneity becomes a little more difficult. Some days, blood sugars just don't respond (perhaps old insulin or bubbles in your insulin delivery system) or you have a little acid reflux. It helps tremendously if you have a reliable contact (surgeon/PA/NP) who can assist you in changing your digestive enzyme amounts or refer you to someone in nutrition. Keeping physically active and eating smaller meals throughout the day may also be of benefit. The important thing is to be patient with yourself and realize this isn't a race but journey, not everything can be resolved in a sprint. There are great days where you cheat in your diet and all is well and other days where you eat right and still have an insulin spike. My last A1C was 5.9 (normal is 5.6). You and your endocrinologist will become friends. You will see them more than your PCP, if you can get an appointment. Seriously. Make sure to find a great endocrinologist who understands your specific issues without these organs, and schedule appointments as soon as you need them. Many doctors have schedules out 7 months or more. I could go on... Please let me know what other things I can explain or clarify. I will be thinking of you on March 4th. You can do this!
-Matt