Confused.com

[Bryn]

Hi everyone. I am new to forums and diabetes. I am 74 years old and in November 2020 I was confirmed as having Pancreatic cancer. A date was confirmed for surgery and it was supposed to be a small tumour near my Pancreas. The chances of successful recovery was very good, so obviously I agreed. To cut a long story short I turned up for surgery. Things started to go wrong from the off. The epidural was horrendous. Anyway the op went ahead and I woke up in recovery 8 hours later and minus 7 pints of blood. When I had recovered sufficiently I was informed it was touch and go and the op they were supposed to do couldn’t be done as my Pancreas was so bad it had spread to my spleen so the surgeon removed both. Without a pancreas and spleen I became type 1 diabetic. I am slowly recovering but have more bad days than good. I am struggling with my diet and insulin. Because of COVID I cannot see my surgeon or a doctor at my practice. I am now required to take 20 tablets a day as well as a tablet called Creon which is required to help with digestion. Trouble is knowing what to eat to keep time from spending hours on the toilet. In the meantime I was discharged from hospital to home with the corona virus, but did not have symptoms. This immediately isolated my wife who is arthritic. We have since been bombarded with letters saying have a corona jab. I was told by the insulin nurses who come in twice a day that we have to wait 90 days. Don’t much care after all that’s happened if I don’t get the jab.
To be continued

 

[Vonny]

Hi @Bryn and welcome to the forum 🙂 Sorry you've had to join us, it sounds like you've been through the mill.

As a type 2 I'm afraid I have very little knowledge about type 1, but just wanted to welcome you on board. I'm sure there will be type 1s along soon who will be able to offer more support and advice

 

[Docb]

Hi Bryn, what a story.

Our resident GURU on Type 3c diabetes - that is what diabetes caused by pancreas removal is called - is @eggyg and I am sure she will be along soon to compare notes and give you some pointers on how to cope.

 

[Bryn]

Thank you Docb and Vonny for your welcome. I look forward to getting some pointers. It’s going to be a long recovery

 

[trophywench]

Hi Bryn - firstly let me send you some {{{Hugs}}} mate. If I could deliver em physically I'd do it.

What insulin have they started you with, or is there enough pancreas left to not need insulin so far?

 

[Pumper_Sue]

I am now required to take 20 tablets a day as well as a tablet called Creon which is required to help with digestion. Trouble is knowing what to eat to keep time from spending hours on the toilet.

Hi Bryn,
wow you have been on a journey haven't you.
If you are having to spend a lot of time in the loo then it sounds as if you are not getting enough Creon.
I'm just starting my journey with Creon and have had some fantastic advice from members of the forum.
Are you taking your Creon after a couple of mouthfuls of food? If not you need to do this. Also cut down on the amount of fat in your diet until you can sort out the right amount of Creon for your needs.

 

[eggyg]

Hi @Bryn just spotted this now. It’s a pain being a Type 3c, we’re not autoimmune like a Type 1 nor insulin resistance like Type 2. I had a partial pancreatectomy and splenectomy 13 years ago at the age of 47. As @Pumper_Sue says, sounds like you’re not taking enough Creon, you can’t overdose as it’s an enzyme not a drug. Also Sue is correct, have a couple of mouthfuls of food first, that kick starts your digestive system, then I take half my dose, have another couple of mouthfuls and take the rest. It is very much a work in progress I’m afraid, there isn’t a quick fix. Too much fatty food will make you dash to the loo unfortunately. So until you have a better handle on things try to a avoid the obvious. For me that is cream, oils, mayonnaise.
It is a rubbish time for having to deal with all this and I feel for you. But a call from your doctor, surgeon, consultant should be suffice to reassure you at the moment. I take it the “ insulin nurses” who come in twice a day are doing your injections for you. They won’t have a great understanding of Type 3c if they have even heard of it, but it appears to me, and I apologise if I’m incorrect, that you are on a mixed insulin regime when the best option would be a basal/ bolus regime, ie a slow acting insulin, usually administered twice a day, ( morning and evening) and a fast acting insulin taken just before eating. Diabetes isn’t easy even without the added “ bonus” of trying to recover from a very major operation. Let us know what insulin you are on, what dosage and what you are eating and let’s see if between us we can offer you some guidance. Elaine.

 

[everydayupsanddowns]

Yikes! Well done for making it through that ordeal @Bryn

Sorry to hear about the Covid, and how difficult that is making the proper follow-up.

My wife died from inoperable pancreatic cancer a couple of years ago, so I know a little how tricksy it can be as a cancer and how inaccessible that area is for operations.

We have a few 'creonistas' on the forum, including @pottersusan who is also a pancreatic cancer survivor who lost her spleen (and stomach and gall bladder!) into the bargain.

Hope some of the hints and tips from members here help you along your way.