Hello
@cherryvalley,
Welcome to the forum. I surrendered my panc'y some 6 months after my 70th birthday and got that instantaneous introduction to the D malarkey. I knew a little about T2, since my brother lost both legs to his T2; I think I was more aware of his amputation issues, than the finer points of D management. Back in 2020 I felt horribly adrift, today I still don't feel I've got this sorted - BUT I now understand that it is always going to be "work in progress" and I no longer worry about days when my D is "off" nor does it frighten me as it did then.
You mention another long reply (other than your 2 posts above) and it's not on the forum (right now only 2 posts are shown as existing. So it looks as though you have a draft somewhere that's not been sent and may now be lost!
Barbara,
@rebrascora, gave some great comments and I would wholly endorse that you will benefit by amending your diagnosis to T3c. You are as if T1, but without the autoimmune vulnerability. Your T2 former status is relevant in that, if originally properly diagnosed, you have rather more insulin resistance than those folk who don't enjoy the wonders of having diabetes. That means your insulin dosing might well be much greater than, say, mine. This is a useful "lesson": we are all different and with D that is so true. What works for one person may be very different for someone else.
Early on after my Whipples I was really struggling. My surgery was in an Oxford Hospital, I lived in Bucks and my DSN was from a Bucks Hospital. I was discharged from Oxford with a T1 diagnosis and I had no idea that T3c existed. But I wasn't T1 and while I was wholly insulin dependent my lack of other pancreatic hormones, such as Glucagon and Somostatin were just not recognised as a difficulty by either my GP nor (most surprisingly) my DSN. There was full awareness that I had no digestive enzymes and Creon was essential. But no awareness that I can't naturally produce vitamins A, D, E and K. I even reached a point where my normally bright and helpful GP, no doubt under pressure from the accountants somewhere above her, decide (aided and abetted by my DSN) to seriously curtail my test strips. I was neither consulted nor advised of this decision and found out when my chemist didn't provide them. I then had to make my robust case to get that stupid decision amended. There simply was no understanding of how much consequence there was to having no panc'y. Lockdown didn't help, GP behind a locked door and several layers of Receptionists et al. Subsequently I've asked various GPs and Nurses about their understanding of T3c to confirm it is almost non-existent.
However, the "as if T1" diagnosis does keep you firmly within the higher level of care that NICE Guidance (NG28) provides, rather than the less helpful guidance to GPs for T2.
I only got CGM after 12 months (somewhat as a result of the curtailment of test strips) and that has been a game changer. Do you have CGM such as Libre 2+ or Dexcom One+?
My salvation during that 1st year was Gary Scheiner's book "Think Like a Pancreas". He is a US citizen, with a relaxed chatty style of writing and over 20 years experience as a T1 himself. He uses US units of measurement but always provides our European units alongside (so helpful). Early on Scheiner tells us that "Diabetes is Complicated, Confusing and Contradictory". That is so true: then and now. Just knowing and reminding yourself of that is, in itself, a great help: when some response to food or insulin isn't working how you've been led to expect - stay calm, it's part of the D is Contradictory; when the carb counting doesn't work - its the D being complicated; when you despair about what to do next - it's the D is Complicated.
Meanwhile, this Forum is a great place for moral support; with centuries of accumulated experience about managing one's D with tips and tricks or workarounds for almost everything. People here understand, yet the overall moderation of the site prevents anyone from trying to dictate what you should do. So ask questions, any question, we've all been in your position at some earlier point. No question is stupid.
Did your surgical team mention internal scar tissue? It was on my pre-op notes but not discussed after surgery and I wish it had been. I was so busy with managing (badly) my D and having Chemotherapy, that scar tissue seemed wholly irrelevant - until it caught a bit of my intestine , blocked my colon and necessitated further surgery reopening my now fully helped visible scar! I wish I'd been aware of that risk and not overdone my physical recovery exercising; too much lifting, stretching etc!
Once again Welcome. I've been where you are now some 4 years ago. Your D is challenging, but manageable and that process really does get easier with time.
