Hello
@BenW, welcome to the forum - but very sorry you have to be here.
There are several T3c members here, but you will actually be joining a very small club as a future T3c, less than 1% of all those in UK with diabetes. Also, since T3c is a specific consequence of having damage to one's pancreas, that damage can occur from a number of reasons and - while I have no stats to confirm this - the number of those having a total pancreatectomy is particularly small. Many people get here from diseases like pancreatitis (as yourself and
@Wendal) but with different routes to that official diagnosis comes different treatment paths. Some T3cs are on oral meds only (in effect as if T2); some on basal insulin only, to help their struggling pancreas; and some with full on Multiple Daily Injections (MDI), ie the basal / bolus regime (as if T1) that
@Wendal mentioned.
My total pancreatectomy was to resolve my Pancreatic Cancer (PC). My operation was called a Whipple Procedure, named after a Dr Whipple who in the 1930s defied the principle that no-one could survive without a pancreas; today its a lengthy procedure, I think mine took over 8 hrs, but they were removing a substantial cancerous tumour - with great care to leave behind none of that tumour and yet not damage anything vital nearby! I was able to get a copy of the post-op surgical report and it makes for scary, yet reassuring, reading. Mine was described as 'pylorus preserving', ie minimal surgery on my stomach and digestive system; others lose their spleen and / or gall bladder along with their panc'y. In my case until they cut me open they really didn't know how much they would need to remove. I effectively signed a blank cheque; they had my agreement they could take what was necessary.
My recovery was a struggle for much of the next 12 months. Partly because I was having significant digestive issues; partly because I had what is called adjuvant (=precautionary) chemotherapy and my body did not like the chemo cocktail; also partly because my diabetes aftercare came during the start of covid isolation. My Diabetes Specialist Nurse (DSN) was a delightful, caring person who had absolutely no understanding that having no pancreas needs very different management to someone with Type 1 diabetes. She had never dealt with a T3c patient. Various changes were made to my insulin dosing regime by her, with no explanation about what she was trying to achieve or how; plus all done by email or phone. We met once, the day after my discharge. Likewise I only had phone consults with the apparent experts, both useless as time demonstrated and I was lucky enough to be able to move under the care of the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). They are brilliant for me and I still get face to face Consultant reviews every 6 months or so.
For my 1st year I only had a glucose meter and finger prick testing. Nothing wrong with that in principle, I'm pleased that I had to become the master of that process and this stands me in good stead when Continuous Glucose Monitors (CGM) misbehaves - which is more often than it should be for some people.
A book that I came across about 12 months in, is "Think Like A Pancreas" by Gary Scheiner. He is based in the US, himself T1 and a qualified Sports Consultant for T1s there, and internationally I understand. Early on Scheiner tells his readers that: "Diabetes is Complicated, Confusing and Contradictory". I read his book cover to cover and used it to teach myself how to carb count, allowing me to become independent of a DSN who clearly didn't think this important. It absolutely is important - vital unless you intend to retreat to a fixed diet, never eating out and very consistent, but simple, exercise and activity routines.
My personal experience over the last 5 yrs is thattScheiner's remarks are so true; comments from members of this forum frequently provide evidence to support that perspective. Having said that please do not let that frighten or depress you: yes it's a difficult ailment to manage, but so many of us successfully do manage their Diabetes. There is a lot to learn, but learn we do - sometimes with 2 steps forward and one back; sometimes from great adherence to the various things we should do and sometimes from what can feel like pure luck. Many of our diaberes management processes are done almost subconsciously; much as we progress from being a learner driver and ultra timidly pulling onto the road for that first drive alone - to just getting in the car and safely completing a long drive with barely a specific thought about how we did that.
I've written a lot, perhaps too much at this time. One certainty: after your total pancreatectomy you will have absolutely no pancreatic functions. Not just no insulin, the hormone that helps move glucose out of your blood stream and into the ccells, muscles and organs that need the glucose. But also no glucagon, the hormone that tells your liver to open its glucose store, when your brain realises your blood glucose is low. No somostatin, a hormone that helps as a regulator between insulin and glucose releases. And of course almost no digestive enzymes (there is a small amount in our saliva that helps a bit); you have already got a start with taking Creon. Guard your Creon stocks, there are international shortages with Creon manufacture which have been causing real supply issues across UK in the last 6-9 months and expected to continue into 2026. Your Creon intake might need to be increased after your surgery. You have to not just think like a pancreas, but make decisions and implement responses as your own Pancreas would have done.
So good luck with your forthcoming op, you have probably got a fixed date by now. Do ask any question that comes to mind. No question is stupid. We've all been new to this and most of us without knowing in advance; I realise that knowing its going to happen is potentially frightening in itself! There are centuries of lived experience about managing diabetes within the Forum membership and members are very consistent in the support each member offers to others, when asked.
