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Chronic pancreatitis

R

Rleady1357

Active Member
Messages
32
Hi all I was diagnosed as Type 1 diabetic in early February of this year

Today I received a letter after many blood, stool and a CT scan that I do in-fact have chronic pancreatitis !

I am so confused and upset right now I feel asif I’ve just been given an early death sentence

I am only 26 years old
 
Hi @Rleady1357 and welcome. I'm in pretty much the same boat as you are. My pancreatitis diagnosis came largely by chance after a CT scan for another issue and after a bit of further investigation it turned out I've a calcified cyst on my pancreas.
Now, the good thing about your and my diagnosies is that now we know what's's what we can start to live our lives adapting to our somewhat iffy pancreas that don't push out enough insulin and don't allow us to gain nutrition for what we eat.
You may find that you are prescribed Creon as pancreatic enzyme replacement therapy (PERT) and if you are this should sort any digestive issues. As far as managing diabetes goes you just maintain your use of insulin, though if you commence PERT you'll possibly find your I:C ratio changes a bit.
I was recently 'upgraded'? from T2 to T3c as a result of my pancreatitis, but the label doesn't really make any difference to how my D is managed, it just explains how I got here.

Your chronic pancreatitis is no death sentence at all, it's just another 'condition' that you've been lumbered with while you get on with enjoying life. If you haven't already done it ask your GP or Consultant abour PERT.
 
Hi, I am in no way an expert in anything medical, I was diagnosed with pancreatitis 5 or 6 years ago, am now type 2 diabetes, for the first few years the pancreatitis was very painful, usually 2 to 3 days in hospital, I am now 60 yrs old, was never a big drinker, now maybe 1 or 2 drinks a year, have not had a pancreas attack in over 3 yrs.
Try not to look at it as a death sentence, make the best of each day, get a bucket list, do stuff you want to do, enjoy the time you have, I know that’s easy for me to say, I am not in your shoes.
You are 26 yrs old, 7 yrs ago my 23 yr old son died in his sleep from a rare heart condition, no warnings no signs, here one day gone the next, after my family were checked I was told my 2 youngest sons have the same (ARVD and short QT) and that I probably would outlive both. Maybe you need to look at this being an extension to your life, a chance to do things, a chance to live,. I hope this waffle of an old man helps, Gary
 

Hi and thanks for your reply! I have a letter from the doctor saying they are happy for my GP to prescribe with the CREON

This bad news all comes after a great couple of phone calls with the diabetic team telling me how well I’ve been doing with my diabetes my Libre says I’m 96% in target range and I’m just shocked by the chronic pancreatitis diagnosis really

Do you have ideas on foods I can eat ?

Thanks!
 
Your TIR of 96% is absolutely BRILLIANT! I'm currently hitting the low 90s and have only once got above 95%.
As far as diet goes you can eat more or less what you want though will of course have to balance carbs with insulin. You may find that you have to increase creon if you have a particularly fatty meal, but apart from this it's a case of carry on eating and enjoying your food.
 

Thank you for another reply they have said they haven’t seen levels that high in range for a very long time especially someone so early into their type 1 diagnosis!

I’d say lows 90’s is still absolutely smashing it though on your part!

I think I could do with stopping going into google and thinking I’m going to die, has my anxiety going through the roof
 
Don’t like to go off topic here but Gary sorry for your sad loss and I hope the medics have knowledge to help your other sons. Reminds me of David Frost’s family though may not be the same condition.
 


Hi rleady1357 hope you are keeping ok, don’t be sad it is not a death sentence I was diagnosed with chronic pancreatitis after a long illness and many tests at about 30 not much older than you, I am now the grand old age of 68 with many more years to come I hope,so you have many years to live your life to the full.
I was only diagnosed with diabetes about 13 years ago controlled with diet and metformin until 3years ago when had to start insulin, if you eat healthy and exercise regular there is nothing you can’t do, I cycle and walk always take your tester and something to eat.
I take creon to digest my food, the only thing I avoid is fatty food.
Hope this is of some help to you, never give up and go live your life.
 

Hello there and thanks for your reply! I am doing okay but I am very much struggling with CREON

Despite taking it and adjusting my dosage to each meal I am still getting bad diarrhea after every meal

This doesn’t matter if I am eating healthy or unhealthy I am having the same results
 
Hello 1357 so good to hear your doing okay. As I think back to when I was first diagnosed with chronic pancreatitis it took some time for me to settle down I started off taking nutrizym and after about 2years found they were not working so well so I was put on creon and they have been fine, I take 4 x 10000 capsules with every meal and it seems to be working fine for me. Have you spoken to your DR about your issues? Also how much creon do you take with your meals?
As for the diabetes it’s not so bad if you take care with your food ie: oily fish,salad, is a good place to start, and exercise, and having read some of your posts it seems you are doing good with that so keep it up
 

Hi thanks for taking the time to reply! I am doing really badly at the moment

I have tried eating healthy and I am still having the diarrhea after every meal, tried fasting for a couple of days, it was hard but still diarrhea

Tried smaller meals and eating more often, same result.

I just don’t know what I can do now, GP doesn’t have a clue what’s happening and hasn’t even suggested seeing someone for more tests or even a dietician.

I feel neglected that I’ve just been left with my CREON to get on with it, when they haven’t worked one but
 
Hi 1357 I am very sorry to hear you aren’t getting on very well.

I do think you need to take your creon as prescribed with a full glass of water with every meal, stick with it and keep the dose the same for every meal don’t change the dose, you need to give your body time to get used to the creon, it’s like I said it took me about 2years for it to settle down.

20 years ago where I lived I was under a specialist who was very good, I moved to a different county and now I get no help at all, so it could be a post code thing.

Maybe if you try sticking to the same amount of creon and things don’t improve you should go to your GP and ask for advice.

Hope this maybe off some use to you and thing start to improve
 
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