Hi
@cupcakequeen71,
I had a total pancreatectomy as my primary treatment for panc'y cancer and no islets captured for transplanting. Like yourself 14 days in hospital and after 3 months of surgery recovery at home I had adjuvant (precautionary) chemo - which I did not enjoy!
Nearly 4 yrs on I've got into a sort of workable routine. I do find I'm agreeing with
@martindt1606 that level days are not frequent and so far I don't qualify for further tech, such as a pump; I manage my D too well (in the eyes of the clinicians) and achieve about 70% time in range - which is seen as v.g., so I'm ineligible for more tech. My short term goal is to convince my Endocrinology Team that I need a pump, to reduce my daily constant commitment to my D management.
I support
@rebrascora's remark about scar tissue. It was on the list of risks that might arise from my surgery. But so was death and somehow all the other risks seemed unimportant. The external scar healed well; the internal surgery can (and did for me) create major internal tissue hardening. That led to my colon getting snagged, trapped and blocked after 28 months; I then needed emergency surgery directly on top of the beautifully healed original incision. This needed 3 weeks in hospital before I was allowed home. Scar tissue therapy can include a form of massage to keep that scarred zone soft and supple and (in hindsight) I wish I'd taken more notice of this "risk" and made sure this possibility was being fully monitored.
The Surgical report declared my procedure was pylorus preserving, so I deduce that minimal surgery was on the stomach itself; but of course some incision would have been needed to disconnect my panc'y and a certain amount of rearranged intestinal work would have occurred. After surgery healing and chemo disruption I was at 8 months still taking fixed doses of insulin as defined by my local hospital DSN - rather than carb counting and determining how much insulin was needed. Because that was leaving me on the high/low bg roller coaster (and I didn't get CGM for several more months) I realised that although I thought my DSN was actively managing me - in practice I was on my own either deeply hypo or ridiculously high, but rarely in between; so I learnt how to carb count and took my care into my hands, thereafter some bg management started to happen.
BUT I was still losing weight and had very poor bowel control. It became obvious to me that carb counting was of limited value if the carbs weren't being digested in an even and predictable manner. So I got my HPB surgical team (from a Hospital in a different County) to refer me to a Urologist in my own County and he systematically set about eliminating possible explanations before finally determining that I had an unusual bacterial infection and needed an unusual antibiotic. Once that problem was sorted carb counting made more sense in terms of seeing "cause and effect" - but still from just finger pricking. That bowel problem seems to be back recently and thus my bg management has declined in recent weeks. But at least I'm aware of what might be the cause and these days generally able to manage it! So we steadily learn and the early anxiety, fear etc does diminish - a lot.
DO ASK if something isn't clear, there is a huge depth of knowledge within the membership of this forum. There is a lot of detail behind the generic principles of insulin dependent diabetes AND that is really quite different from T2 diabetes treated by oral meds. Both have their complexities and there is not much similarity. About 10% of those with D are T1, almost 90% are T2 and the rest of us, altogether are less than 1%. As a T3c with no panc'y you (and I) are very rare. Your surgical team will have a great understanding of your diagnosis and your unique islet transplants circumstances. The vast majority of the rest of all Health Care Professionals (HCPs) simply don't know much about insulin dependency and won't have a clue about the significance of you, as a T3c and very unusually with absolutely no pancreas. They will be oblivious to the fact that you have absolutely no other pancreatic hormones and will sometimes make ludicrous assumptions or try to tell you to follow their protocols, even when those protocols can't apply to you. This aspect can be frustrating, but knowing this frustration can occur has allowed me to hold my own and resist.
I could go on, but won't. Welcome.
