Pancreatic enzyme replacement therapy

Hi @Jon_boy_Jones_ , welcome to the forum.

Jon_boy_Jones_ said:

I had pancreatitis in April 2017, and now have T1 diabetes

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If the diabetes is a direct result from your pancreatitis, it's type 3C, which is diabetes as a result of damage to the pancreas.
If the damage is big (or if the whole pancreas was removed) you can't produce (enough) insulin, making type 3C much like T1 but with a couple of differences.
In T1, only the cells producing insulin are broken, but the pancreas does more than produce insulin, like producing those digestive enzymes and some other stuff. So with 3C it's common to have to supplement this.

Jon_boy_Jones_ said:

I’ve tried my GP and he/they are clueless.

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Are you being seen by an endocrinologist and diabetes specialist nurse for your diabetes, or only by your GP and practice nurse? It's the endo you need, not your GP, most of us T1's (and 3C's on insulin) are under hospital treatment because it's too specialised for a GP (although there are exceptions).

I'm tagging @miahara and @Ledzeptt for you, both of them have T3C and are on insulin and creon, if I remember more members on it I'll tag them as well.
There's also @PenguinMum , who is not on insulin but does take creon.

You also might want to read around this subforum: https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/
It's not a very busy forum, but older threads might be helpful to you as well.
If you use the search bar on the top right you can do a search for creon, which will lead you to lots of posts where it's mentioned.

Good luck!

Hi @Jon_boy_Jones_ welcome to the forum. My background is I had a distal pancretectomy (tail of pancreas removed) ten years ago due to a growth the only symptoms were a constant dull ache beneath my rib cage. I was put on food replacement enzymes (Creon) straight away. Then nearly five years ago I was diagnosed T2 after a routine blood test. Anyway I asked to see an endocrinologist at the hospital and he emphasised how important it was to take my Creon diligently. I have been controlling my BG since by strict low carb diet. The time may come when I need to see the Endo again if my A1C creeps up above the threshold and its possible I may need some exogenous insulin but I am not there yet.

PenguinMum said:

Hi @Jon_boy_Jones_ welcome to the forum. My background is I had a distal pancretectomy (tail of pancreas removed) ten years ago due to a growth the only symptoms were a constant dull ache beneath my rib cage. I was put on food replacement enzymes (Creon) straight away. Then nearly five years ago I was diagnosed T2 after a routine blood test. Anyway I asked to see an endocrinologist at the hospital and he emphasised how important it was to take my Creon diligently. I have been controlling my BG since by strict low carb diet. The time may come when I need to see the Endo again if my A1C creeps up above the threshold I will likely be labelled T3C and I may need some exogenous insulin but I am not there yet.

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Sorry posted before I was ready. I agree with @Antje77 you are probably T3C not T1 and the best thing is to get yourself referred to Endocrinology at the hospital ASAP and they will understand your situation a lot better than the GP or Diabetes nurse. You likely should be on Creon to help digestion and avoid tummy ache. Best wishes.

There's not much I can usefully add that hasn't already been stated. You do need to see a good endocrinologist and discuss your symptoms and possible treatment.
Good luck!

Jon_boy_Jones_ said:

Hi,

I had pancreatitis in April 2017, and now have T1 diabetes, I have been in hospital a few times in the last 3 years in extreme pain after eating, hospitals aren’t very good as they diagnosed me with a stomach ulser and would listen to me as I know the pain associated with chronic pancreatitis.
After a CT I had am inflamed pancreas, I got pain replied and sent home!!!

I have been trying to research and found out about PERT which replaces a certain enzyme to help digest food which the pancreas would normally do in a normal person. I’ve tried my GP and he/they are clueless.
So thought I’d post on here if anyone else has this problem and can help me?

Thanks

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Hi pert is often prescribed as it helps with pain if your pancreas is damaged. Pert is only prescribed when exocrine pancreatic insufficiency is tested for and is often over looked at A&E it not common. you need to ask you GP / endo to refer you to a gastroenterologist who will carry out the tests you need.