Hello
@CoventryTrev,
There are various 'routes' to get into the small and select T3c club, one of those is a total pancreatectomy; others get here because of ongoing pancreatic problems, particularly pancreatitis and the damage from that affects their pancreatic functions, to the point their ability to produce insulin becomes seriously impaired. Those others still have their pancreas and potentially still have complications from their pancreas, beyond the diabetes.
The total pancreatectomy does bring certain challenges, but at least you don't have a residual pancreas introducing residual side effects and adding to the confusion or complications .... You will definitely need to have Pancreatic Enzyme Replacement Therapy (PERT) - which in real language means taking Creon capsules with food that replace the digestive enzymes that would come from the pancreas; Creon like insulin is unavoidable with no pancreas. Also probably general A-Z vitamin supplements, to replace vits A,D,E & K which uniquely come from your pancreas. Its a small organ, but does a lot behind the scenes (well stomach to be more accurate) to keep us alive!
As
@trophywench says you can have a life after the surgery and attain a reasonable degree of restoration of normality, but (sorry that there is a but) you will find you need to learn fast and make some adjustments to accommodate the diabetes.
May I ask what has necessitated this surgery?
Did they say what your surgery was called?
I had pancreatic cancer and I was 70 when I had a Whipples Procedure (an 8 hr op, carefully removing all findable cancerous bits). My recovery from the surgery took some 3 months before I was healed and back to near normal physical capacity; I then had adjuvant (precautionary) chemotherapy, which I particularly struggled with. So it was some 6 months before I truly rejoined the real world and my wife and adult family gave me brilliant support - mentally and physically.
Initially I found the diabetes confusing, complicated and thus frightening (sometimes terrifying!). During my work career I was indoctrinated with a mantra that "Knowledge Dispels Fear" and post op I made it my business to learn as much as I could about diabetes and what my missing pancreas was no longer doing. I didn't expect to have surgery and emerge diabetic, I was told it was a 1:20 chance and inevitably imagined that wouldn't be me. So I was very unprepared, and post op just wrestling with the resultant surgical trauma, soreness and so on.
From your opening post it seems your pancreatectomy is inevitable and while you are pre surgery time spent understanding as much as you can would be invaluable, while your mind is not distracted by surgical and mental healing. I found the book by the American Gary Scheiner "Think Like a Pancreas" to be invaluable. He is himself T1 and a certified Endocrinologist and diabetes educator. His book concentrates on insulin dependent diabetics. He explains things well, in my opinion and the latest version that I have of his book puts any numerical information in both US Imperial and European (which includes UK) metric units.
I drive my car long distances without difficulty. I had to notify the DVLA that I'm insulin dependent and that is for the most part a formality, but they have certain criteria to be complied with. Totally manageable for private cars. HGV driving is not so straightforward for insulin dependents; the risk is that with too much insulin 'on board' our Blood Glucose (BG) can drop dangerously low and our mental and physical abilities become impaired, even to a point of unconsciousness. So not an ideal combination for an HGV or PSV driver. Anyway something you need to look into.
The main challenge is in managing to balance the carbohydrates that we eat (which get converted by our digestive system into glucose that is put into our blood) with the insulin we need to inject, to enable the glucose to leave the blood stream and get into individual body cells and organs where it is needed to maintain our body. This means the right amount of insulin at the appropriate time; done well hypoglycaemia (BG too low) and hyperglycaemia (BG too high) can be avoided. But this is as much an art as it is a science and, as
@trophywench 's analogy with learning to drive, it becomes easier with time. Just not too easy!!
Carbohydrate counting is essential if you want to get your life back; otherwise you can survive on fixed insulin doses for fixed meals (ideally at fixed times). May be OK for an infirm or elderly person, but not for me. Time spent reading up about carb counting ahead of surgery would not be wasted; "Think Like a Pancreas" has a lot on that. Your wife will inevitably become enmeshed in the consequences of what carbs are in what meals and what timings are needed - so you can take insulin in advance of the food arriving (it's called a pre-bolus), unless you are the chef in the house. If your wife slips a couple of tablespoons of cornflour into that favourite dish you both enjoy, for example, you need to know so you can allow for the carbs in your share of that cornflour (deceptively lots). Information about carb content is on most packaging and I use the Carbs and Cals book for further information; I also have their app but don't like it and poor value for me; won't renew my annual subscription (over £30 pa). By taking insulin you can eat whatever you want, in common with T1s and unlike T2s who generally need to have low carb diets; unless you either have weight control constraints or pre-existing digestion issues. But you must calculate and take insulin accordingly. Strangely, when I'm away from home and on my own I often find this less of a problem: I can buy prepacked foods which has the carb content declared on the packaging (carbs - provided on the back and in small print - not just sugars in large print on the front) - whether its a simple sandwich or a sausage roll, packet of crisps, lump of cheese (no carbs as it happens), a cereal bar and a coffee. Lunch at home needs more effort to count the carbs after foraging in the cupboards and assembling! I am an omnivore and eat almost anything. If its a very high carb product I'll either eat a smaller portion or resign myself to a bigger than normal insulin dose! I have found my impaired digestive system, post pancreatectomy, struggles with a big steak; just don't seem to be able to digest it all. But that is pretty well the only problem - and could be partly because of a protein overload room the meat; but I must take Creon or most food passes through barely digested and that is not a pleasant outcome for all the household. I have no weight concerns, so have a high fat diet - lashings of butter, oil or cream at every opportunity.
There are loads of things I could bore or overwhelm you with here, but I won't! This forum is an excellent source of information and there are centuries of accumulated experience from members who willingly put their heads above the parapet and offer advice, help or suggestions. This 'thread' that you have started as a newcomer will probably get very lengthy with welcomes and initial advice; from that length it can sometimes become difficult to see the wood from within the trees. So if you have a specific question consider asking that as a new thread, to get focussed answers (although there is often digression from the question, which can become fun). If you want to catch the attention of someone specific, just open your text with "Hi @
CoventryTed and the post to that person will get flagged up to them from the bell symbol at top right. There are many members, some very active daily, others lurking quietly and pop up less frequently. I think the 'mechanics' of this site are excellent and it has great digital versatility, for bookmarking etc, etc. Worth spending half an hour just exploring what it offers; not too long it can become addictive!!
Good luck.
) so our GP is still in H and we get referred to UHCW for most things - though Mary Ann's place is physically nearer - I imagine that's where you're being seen, at Walsgrave ?
