Newby alert!

[Frenchie0506]

Hi everyone

I was recommended to join this forum as became a Type 3C diabetic due to a complete removal of my pancreas on 6 July. I was fortunate enough to have had the surgery within two weeks of an IPMN cyst being discovered on the head of the pancreas - it was blocking the bile duct and led to jaundice (I have never looked so yellow, or been so itchy in my life!) this probably saved my life as the consultant surgeon said that many pancreatic cysts go undetected until things get really serious. Having said that, we're waiting for the results of some tests which were run in the path lab so still might have to have chemo in case there was anything lurking in my lymph nodes, but will cross that bridge when I get to it.

Although the past month or so has meant life changing surgery, and there's a lot to think about as far as managing diabetes going forward, I'm so unbelievably grateful to the NHS and my family who pushed me to see the doctor.

I'm currently recuperating from the op and getting to grips with testing my BGL and injecting insulin x 3 times a day plus on enzyme replacement tablets (Creon) which I take with everything I eat. So far, most of my BGL tests have been within range, but I'm not eating anywhere near as much as I used to so not sure if BGL in future will change.

I'd really like to hear from other T3 diabetics, and find out how they are managing their lives.

Thanks in advance 🙂

 

[rebrascora]

Hi Frenchie and welcome

You seem to be taking things in your stride remarkably well but I guess having such a life threatening situation puts things into perspective. Fingers crossed your test results come back clear. We have a few Type 3c members here @eggyg being probably the most regular contributor and I am sure Elaine will have some helpful tips and advice to offer but the thing with diabetes is that (assuming you are on a basal/bolus 2 insulin system) you learn to adjust your insulin to the food you are eating..... It might help if you could tell us which insulin(s) you have been given.
From the bits I have read, I believe the Creon is similar in that finding the right dose for you and the food you eat may be a matter of trial and adjustment over time.
Anyway, good you have found the forum as I am sure it will be helpful and supportive to you and look forward to reading about your progress.

 

[Frenchie0506]

Hi Frenchie and welcome

You seem to be taking things in your stride remarkably well but I guess having such a life threatening situation puts things into perspective. Fingers crossed your test results come back clear. We have a few Type 3c members here @eggyg being probably the most regular contributor and I am sure Elaine will have some helpful tips and advice to offer but the thing with diabetes is that (assuming you are on a basal/bolus 2 insulin system) you learn to adjust your insulin to the food you are eating..... It might help if you could tell us which insulin(s) you have been given.
From the bits I have read, I believe the Creon is similar in that finding the right dose for you and the food you eat may be a matter of trial and adjustment over time.
Anyway, good you have found the forum as I am sure it will be helpful and supportive to you and look forward to reading about your progress.

Hiya Rebrascora

Thank you for the very supportive message - it's good to know about this forum and that there are others who are in a similar position, health wise. To be honest, it all happened in such a whirl that I probably didn't get much time to think. After the local hospital found the cyst on 21 June and subsequently referred me to Churchill Hospital in Oxford, I met the consultant surgeon (who was amazing) on Friday 2 July then had the op on Tuesday 6 July. On top of this, I moved house on 25 June and my youngest had her second baby by c-section on 17 June, so it's been a proper roller coaster!! Ironically, I moved to be nearer her so that I could help her out with the children, but neither one of us has been much use to each other yet 😎 we're like the walking wounded.

In quiet and reflective moments, I do think 'what if..' but soon push those thoughts away cos they're too big and scary to think about, so tending just to take each day as it comes now.

I've been prescribed Levemir x 8 units twice a day and NovoRapid x 4 units x 3 times a day. At the moment, those doses seem to be ok but have noticed how my BGL shoot up if I eat white rice - have been eating a fair amount of sushi over the past couple of weeks as it's pretty low in fat - the consultant has put me on a low/no fat diet until a drain to remove Chyle dries up....Which I'm hoping it does so this week...

Thanks for the good wishes re the path report, I'm hoping for the best but have to psych myself up for not so good news.

best wishes

 

[khskel]

Welcome from a fellow creonista although in my case due to autoimmune pancreatitis.

Things will get easier when you get your Creon doses sorted and you are able to carb count and match your insulin to your food. Fixed doses of are a bit of a pain.

 

[Frenchie0506]

Welcome from a fellow creonista although in my case due to autoimmune pancreatitis.

Things will get easier when you get your Creon doses sorted and you are able to carb count and match your insulin to your food. Fixed doses of are a bit of a pain.

I’m a bit worried about carb counting and adjusting insulin to food eaten - mostly because maths isn’t my strongest subject! Guess I’d better get reading up on that now. Thanks for the heads up @khskel

Like the term ‘creonista’ - makes having to take them seem quite exclusive which guess it is in a weird sort of way.

 

[eggyg]

Hi @Frenchie0506 welcome to the very exclusive club of Type3c diabetics and Creonistas. @mikeyB is to thank for that moniker.

I had two thirds of my pancreas removed in December 2007, unlike you my tumour was in the body/tail area. They left the head to try and stop me becoming diabetic, it worked, for three years. They also did all the histology tests and luckily mine was a pre cancerous tumour, no treatment required, thank goodness. Fingers crossed it will be the same for you.

Firstly though I’m going to say, recover from the op before worrying about blood sugar levels and carb counting too much yet, it will come. More important to get yourself fit and back to “ normal”, although as we are special we will never be normal! 😉 I’m living proof that life can get back to normal after such a large operation. I’m 61 now and I really think I’m fitter now than I was in my 40s. I have five grandchildren who keep me busy. Avid walker and sometime fell climber.

Any questions and I will try to answer to the best of my ability, but rest, let everyone run after you for a change and don’t try to run before you can walk. And soon you’ll be running after grandchildren. Elaine. 🙂

 

[everydayupsanddowns]

Welcome to the forum @Frenchie0506

Glad you have found us!

Hope your recovery goes smoothly, and your good BG levels continue.

Keep firing away with any questions you have, and let us know how things are getting on 🙂

 

[Frenchie0506]

Hi @Frenchie0506 welcome to the very exclusive club of Type3c diabetics and Creonistas. @mikeyB is to thank for that moniker.

I had two thirds of my pancreas removed in December 2007, unlike you my tumour was in the body/tail area. They left the head to try and stop me becoming diabetic, it worked, for three years. They also did all the histology tests and luckily mine was a pre cancerous tumour, no treatment required, thank goodness. Fingers crossed it will be the same for you.

Firstly though I’m going to say, recover from the op before worrying about blood sugar levels and carb counting too much yet, it will come. More important to get yourself fit and back to “ normal”, although as we are special we will never be normal! 😉 I’m living proof that life can get back to normal after such a large operation. I’m 61 now and I really think I’m fitter now than I was in my 40s. I have five grandchildren who keep me busy. Avid walker and sometime fell climber.

Any questions and I will try to answer to the best of my ability, but rest, let everyone run after you for a change and don’t try to run before you can walk. And soon you’ll be running after grandchildren. Elaine. 🙂

Good morning eggyg

Your words of wisdom are so appreciated! It sounds like you had to undergo pancreatic surgery twice? Crikey, once is hard enough on the body and mind…the consultant surgeon was debating whether to leave a small portion of the tail but decided, on balance, to remove the whole thing which I’m grateful for.

it’s encouraging that you’re feeling fitter now than in your ‘40’s - I’m of a similar age to you - turned 60 in June and before surgery was walking around 40 miles a week with my two woofers. Hoping to slowly build up to that again over time, without over doing things.

I’ve just received a couple of dietician appointments which is good - hoping to have the drain removed tomorrow, in which case I will hopefully be able to get back onto a normal diet, rather than the fat free one I’m currently ‘enjoying’

Best wishes

Helen

 

[eggyg]

I did have a sort of pancreatic surgery twice if you count the emergency gall bladder removal and pseudo cyst draining I had way back in 2001. That’s when the whole sorry saga started. But I’m still here!
The drainage removal is a big step, I was still in hospital when they done mine, thank goodness. I was in hospital for three weeks, so most of the messy stuff was dealt with there. Took a few weeks to build up my appetite and realise what worked ie not too much fatty stuff without lots of Creon. If I could give you some very helpful advice I got from a fellow Creonista and retired GP. Take a couple of mouthfuls of food first to get your digestive system working then take your Creon. Remember also you need what you need, it isn’t a drug it’s a replacement enzyme so you can’t overdose, you may get “ bunged” up if you take too much!
Good luck and and questions please ask on here or if you prefer, PM me. Elaine.