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Pancreas removal

L

Liz25

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Type 3c
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I’m a 69-year-old woman and I’ve been living with chronic pancreatitis for around seven years. I suffer from regular, painful attacks which I currently manage with Oramorph when they become severe. Back in 2018 or 2019, I was told I had a small non-cancerous mass at the tail of my pancreas. Now, in 2025, I’ve been informed that the mass has grown and is classified as an IPMN (Intraductal Papillary Mucinous Neoplasm). Although it is still suspected to be non-cancerous, it has caused significant damage. What began in the tail has now spread, I now have three areas of damage, including a large mass in both the head and tail of the pancreas. The main pancreatic duct is also inflamed and damaged, and is now producing a mucus-like substance (I believe there is a name for this but I haven’t been able to recall it). The overall impact is that most of my pancreas has effectively been destroyed.

I’ve now been given two options. The first is to undergo a full pancreatectomy, which is a life-threatening operation with major risks and long-term consequences. It would leave me insulin-dependent for life, would likely require enzyme supplements and comes with the possibility of serious complications both during and after surgery. The second option is to continue as I am — to live with the condition, and have the hospital monitor the IPMN and overall pancreatic function. The hope would be to gain a few more good years before a more urgent intervention is needed.

The problem is, I’m already losing a significant amount of weight and have recently developed diabetes. My quality of life is noticeably declining, and I don’t feel confident that doing nothing will keep me well in the short or long term. At the same time, the thought of such a major operation at my age, with everything that comes after it, is daunting to say the least.

I’m posting this to ask if anyone else has faced this decision, or gone through this kind of operation. If you’ve had a full pancreatectomy, how have you found life afterward? How do you manage insulin and digestion day to day? And if you’ve chosen to monitor your IPMN instead of having surgery, how has that worked out for you so far? I've also heard about people being candidates for an artificial pancreas. Wondering if this is another option.
Any insight, advice, or experience you can share would be really appreciated. I just want to make the most informed decision I can.
 
@Liz25 welcome to the forum. I am a few years older than you and would find it very difficult to make those decisions. I joined the forum last year when diagnosed by type 2. There are a huge variety of members who want to pass on useful information. I now know quite a bit about type 1 and type 3 but only offer advice from my own experience. There are a small group of type 3s who offer immense help to those facing panrcreatisis. I'm sure you will receive very useful info soon.
 
Welcome @Liz25
I'm Type 3c following one severe attack of acute pancreatitis. Not much useful pancreas left so treated with insulin (as if Type 1) and taking Creon (digestive enzymes). It can be tricky juggling blood sugars at times but it can be done.
If you're losing weight have they suggested taking digestive enzymes now? I was started on them as soon as I managed to eat.
I think @martindt1606 is also Type 3c following a pancreatectomy.
 
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Hi Liz
I had a total pancreatectomy after an IPMN blocked my pancreatic duct, similar to you. This was followed by chemotherapy as the IPMN was actually adenocarcinoma. I now use Creon and insulin to help control my digestion and glucose .
I was told the medics would only know for sure what they dealing with once they opened me up, I suspect you might be in a similar position.
The surgery isn’t pleasant nor is the chemotherapy but at least I know I am cancer free currently. I always felt that ‘ the growth’ and hence symptoms were getting worse until the pancreas was removed. I now lead a healthy life , diabetes can be challenging but is manageable and you are in control rather than having an IPMN, ie something is growing but we are not sure what it is, spreading where it likes. Have you had staging done?
I don’t regret having a total pancreatectomy.
Good luck
 
Welcome to the forum @Liz25

As you have seen there is loads of experience to tap into on here from those with Type 3c (due to removal/damage to pancreas) . Your insulin management would become similar to those of us with Type 1 with the addition of juggling additional enzymes. It is a lot to learn but manageable and you have come to the right place for support.
 
Morning Lisa and such a terrible dilemma to be in and feel for you in having to make such a decision.
As I still have some functioning pancreas but not much and certainly never faced a pancreas removal so can’t contemplate the surgery and recovery so best to leave it up to others to advise you better there.
However in terms of making such a decision I will go through my reasoning which may of course be very different from your own and of course needs to take the medics specific advice taken into account.
I would have a frank discussion with medics about what they would advise,chance of surgery success,risk to life etc but assuming it was generally in my favour I would probably go ahead with the surgery on the following basis.
Much better to have such surgery at a time of my choosing and at 69 rather than wait a few years and then have to have such surgery when I was older and weaker.
Also having only undergoing one bad episode of pancreatitis which I found traumatic I would hate to have recurrent bouts which would affect my quality of life.
Furthermore constantly losing weight brings about its own complications and totally affects your quality of life.
Similarly I do believe that after a pancreas removal and I am not attempting to underscore the risks/ or trauma then after yes a long period of adaption then with the correct medication you can live a full and normal life but as I said others who have gone through this process can better comment than me.
Wishing you all the best and wisdom of Solomon in making your decision.
 
The outcome from a planned surgery is usually better that when it is done in an emergency situation and usually safer.
Recovery is better the younger and stronger you are. Certainly a lot to think about and discuss with your consultant.
 
Hello @Liz25, welcome to the Forum. I had a total pancreatectomy in Feb '20 to resolve my Pancreatic Cancer (PC) diagnosed in late '19. This was my abrupt personal introduction to the world of diabetes. No "run-up" or lead in from pancreatitis; but my late brother surrendered both his legs to his T2 diabetes some 10 yrs prior; so I was aware that diabetes could seriously mess up one's life and not paying due attention to or practicing sensible management of diabetes could charge one with a high penalty!

I won't mislead you - having no pancreas is tricky. I liken it to being "as if T1" but with some added challenges and yet having the small benefit of none of the uncertainty from having a part working pancreas and intermittent pancreatic behaviour.

Others have offered their thoughts. I particularly think, like @Wendal, that for me accepting the choice of having my panc'y out shortly after my 70th birthday was (again for me) a good decision - I was still fit enough and strong enough to withstand the trauma of this major surgery and to adjust to my new world of total insulin dependency. I was also fortunate to have a strong supporting wife and equally supporting daughter who then lived c.35 miles away. In hindsight I doubt that I would be so strong or mentally willing to make this decision today, now 76 [assuming I would still be considered fit or strong enough to be given the choice].

Without doubt there are risks from having such major surgery. The Surgeons have a legal responsibility to spell these out and yes, death during surgery is one of those risks. In all I seem to recall there were 11 risks listed on my consent form, including problems from surgical scar tissue. Not surprisingly I didn't notice that particular risk. I didn't die, but did have a significant scar tissue problem (despite this being quite rare) and I wish I'd paid more attention to looking after my scar tissue!!! Now 5 yrs on I can and do look back and realise I'm doing OK in the wider scheme of things.

It was challenging making that sudden transition post surgery to my insulin dependency. I was discharged just as Covid was closing everything down. So no subsequent face to face with my local Hospital diabetes team; the next 12 months were a real struggle. BUT, then I wasn't offered Continuous Glucose Monitoring (CGM) which will be available to you nowadays. Then, also, I hadn't found this Forum, which has subsequently become so important for me in helping me understand a great deal more about what my body is experiencing and with a strong membership happy to share their experience with folk new to Diabetes. I have a strong perspective that Knowledge Dispels Fear and this Forum has been an immense help with providing more knowledge, allowing me to have the confidence of getting on with managing my D.

This is certainly not easy. BUT it is possible and I, like so many other totally insulin dependent people, do this D management routinely and safely. Now at the 5+ yr point, and with the freedom of retirement, I just do most of my D management as background routine. I am very independent, travelling as much or as little as I wish. I'm active, walk lots, garden lots and drive lots; I choose to not run for a bus any more! I eat what I like, and take enough insulin to offset the glucose that my food metabolises into - but I do need Pancreatic Enzyme Replacement Therapy (PERT) in the form of CREON capsules since one's pancreas is the main natural source of our digestive enzymes. When I get my D management wrong, it's not an immediate disaster. I find I recognise the symptoms, my CGM sounds alerts for when my BG is too low or too high and I can take corrective action in a late, but timely, manner. I am far from an expert, but I have sufficient knowledge and I can manage most concerns or fears. What I don't know, I ask: my Hospital Consultant or this forum.

I hope this gives you some insight into my world of having no panc'y. If I've missed something you would like to know please ask. NB I have negligible knowledge about pancreatitis itself, that wasn't my entry route to T3c. I can't say I thoroughly recommend this course of action (!) but it has worked for me and the alternatives were pretty limiting. It has needed a mindset change, but in practice as we grow older change is one of the few consistent things in our lives anyway.
 
Hi @Liz25 I had my Pancreas removed back in 2010 - it is survivable and a reasonable quality of life is possible however it does require quite a lot of concentration and dedication to manage blood sugars and diet. However this would still be the case if you decided not to go ahead with the operation.
I'm not 100% clear from your introduction but given the prognosis with your pancreas and the loss of weight are you already prescribes insulin and PERT (Creon)? If not, you should consider arranging a discussion with your consultant.
You also asked about an artificial pancreas - that is a Continuous Glucose Monitor integrated with an insulin pump.
 
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