Total pancreatectomy challenges

I had a distal, but wanted to let you know I’ll be praying for you for a smooth surgery and alleviation of your current symptoms. Please keep us apprised.

Thank you!

Call Dr. Evens in WI Froedtert Hospital for second opinion He will do it via Zoom call He does 140 Whipples a year.

Christie,
My wife went through a total pancreatectomy almost 9 years ago. It was accidentally found early on.
You have seen several surgeons but have they been at the major cancer hospitals? My wife was at Mem sloan kettering in new york city which is considered the second best after MD Anderson in Texas (not sure what city). Also Roswell Park in Buffalo NY is very good. Or if you are closer to Cleveland clinic or the Mayo clinic (Rochester Minnesota). We traveled 350 miles to see the best surgeon. Her surgeon is now head of surgical oncology at Duke in Durham NC. Dr Peter Allen. You must get the opinion of doctors who do this surgery 5 or 10 times a month not docs who do it 5 or 10 times a year!
Your whipple took the anterior of the pancreas I believe. That is where the enzymes come from. The distal or tail is the insulin, so my wife is taking pancreatic enzymes (she takes Creon but there are other brands) and is a type one diabetic.
When she doesn't take enough enzymes, she gets more diarrhea. Surgeons tend to not prescribe enough enzymes after whipple for fear of too much can cause an intestinal blockage but not enough causes diarrhea. The literature for Creon says the range to take is from 500 units per kilogram body weight per meal up to a maximum of 2500 units per kilo body weight per meal. One kilogram equals 2.2 pounds. If you are 100 lbs then 100 divided by 2.2 = 45 kilos. Then per meal take 45 X 500 = 22,500 units minimum up to 112,500 units max per meal (2500 X 45=112,500). So if you take 12,000 unit capsules, that is roughly a minimum of 2 caps up to 9 caps per meal. My wife is 61 kilos and takes between 6 and 10 caps per meal of her 12,000 unit caps = a max of 120,000 units per meal. Please go over this with your surgeon to confirm that I am correct since I am not a doctor and I am not prescribing.
It took a while to get accustomed to managing her type I diabetes but she does fine. She uses a continuous glucose monitor on her arm (like on the TV commercials) and an automatic insulin pump that gives her insulin automatically. But she started out using a finger stick test and syringe injections until she was taught the automatic system. An Endocrinologist who specializes in diabetes will help you.
Since the bile duct gets moved in this surgery, sometimes bile causes some indigestion. My wife also takes a proton pump inhibitor, omeprazole or pantoprazole indefinitely. This is also to prevent ulcers due to the acid in the stomach and the acid affects on the removal of part of the small intestines.
This all sounds overwhelming, but she is managing for 9 years and you can also.
But you need to get advice from experts at the best cancer hospitals first. Maybe you have since you didn't mention where you are seeing doctors. I would think if you are in the south, Birmingham has a great medical center. I think Emory in Georgia is well known. If in Boston area, Dana Farber and Mass General. Out west the Mayo clinic. West coast must have good cancer hospitals but I am not familiar with them. And east coast I'd see doctors at Mem Sloan Kettering, Dr Jarnagin is a pancreatic surgeon and Dr Eileen O'Reilly is a great pancreatic oncologist to get opinion from at Sloan Kettering. Please.

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