Creon, timing and other fine tuning.

[Robin]

Asking for a relative with pancreatic cancer (not my immediate family) who has just had to start Creon, but not diabetic at present. He's had a lot to take in, and one thing which has slipped by is the finer details of the art of Creon dosing. He was put on a fixed dose, but I’ve talked him through varying it for fattier meals, based on what I’ve gleaned from reading all you Type 3c's posts, but what he wants to know is how to time it best. Do you take it just before eating? With the first bite? Midway through? Or what. And is it like insulin, where you can 'top up' with an extra bolus if you unexpectedly have a pudding?
He’s also read that milk can negate the effect of it, have you found this?
Calling @eggyg , @Proud to be erratic , @martindt1606 , @soupdragon @Wendal who spring to mind, (I’ve missed lots of you out, I know.)

 

[eggyg]

@mikeyB gave me the best advice years ago. Have a few bites of food to get your gut started then take your Creon. Yes, you can take it ad hoc, you can’t overdose but too much can make your bottom a bit itchy and burn! TMI sorry!
I don’t drink milk but I’ve not heard that it negates it. One thing you’re supposed to do is drink plenty of water with Creon, I must admit I don’t and I’ve been known to take them with wine as as usual the waiter had ignored my request for a glass of tap water!
It is a very suck it and see sort of thing. After almost 17 years I don’t always get it right.

 

[Proud to be erratic]

Asking for a relative with pancreatic cancer (not my immediate family) who has just had to start Creon, but not diabetic at present. He's had a lot to take in, and one thing which has slipped by is the finer details of the art of Creon dosing. He was put on a fixed dose, but I’ve talked him through varying it for fattier meals, based on what I’ve gleaned from reading all you Type 3c's posts, but what he wants to know is how to time it best. Do you take it just before eating? With the first bite? Midway through? Or what. And is it like insulin, where you can 'top up' with an extra bolus if you unexpectedly have a pudding?
He’s also read that milk can negate the effect of it, have you found this?
Calling @eggyg , @Proud to be erratic , @martindt1606 , @soupdragon who spring to mind, (I’ve missed lots of you out, I know.)

It's like insulin in one sense - we're all different and you need what you need. Fixed dose reflects a very poor understanding by the HCP.

I take mine spread throughout a meal with a large glass of water to wash it all down and start after the 1st or 2nd mouthful. I'm prescribed 1,000 capsules (=10 tubs) of the larger 25k capsules monthly. I take 1 capsule with a milky coffee (probably would manage with a smaller capsule for that lone coffee) and one capsule with a coffee and a fatty cookie. My 1st dietician afterbmy surgery emphasisedto rake Creon with a milky drink. After that I use a dosing "guage" of at least one capsule for every 10 gms carbs. I know that it's a matter of helping the fatty foods digest, but I find life too short to try and gauge the fat content accurately; on Thurs eve we were dining at friend's house and the main course was extremely fatty and the carb content very low so I just arbitrarily took 5 capsules, spread out, for that main. I then took another 5 with the array of local cheeses our hostess had generously provided, again spread out.

It has been my understanding that there is no point taking Creon after the food's been eaten and could be bad for you since the grains inside a capsule can be pretty "corrosive". A leaflet talks about if you have difficulty swallowing a capsule empty the contents into something like apple puree and smuggle it into your gut that way; I wouldn't risk that - a capsule broke open once - and the grains made me want to wretch and lots of puree-like food off my plate wouldn't shift those in the cracks and crevices of my oesophagus. The burning sensation was dreadful.

Trial and learning worked for me. There is a chart on an NHS site that shows, in colour, different degrees of digestion and the resultant faeces. Unpleasant as that sounds it was very helpful when I was in trouble early on after my pancreas was removed. Somewhere I had a bookmark for that chart; a hasty search just now has not been successful. I'll try again later today.

I have repeatedly been advised you can't overdose on Creon. But my opening comment applies - we are all different.

I got my Pancreatic Cancer (PC) shortly after my 70th birthday. There is plenty of cancer history amongst my older brother (oesophagus), sister (bowel) and myself but I had no warning symptoms. Just jaundice as a result of the slow growing tumour trying to strangle my pancreas and closing my bile duct; the bile gets backed up and the jaundice comes from an excess of bilirubin. My bile duct could have been reopened with a stent but my Surgeon at Stoke Mandeville "forgot" me and took 6 weeks and 2 reminders to formally confirm my diagnosis, then take steps to arrange the stent fitting. I'd become a walking zombie; my wife was desperate watching me slide into that state with zero medical help. The excess bilirubin is extremely debilitating, it seems. By the time I got my formal diagnosis I couldn't understand much and was taking 2 hrs to get dressed so I could sit in a trance downstairs; then 2hrs to get back to bed. Today, despite no pancreas, I'm outwardly in great shape and do everything I want to do; I can overdo things and make myself overly tired. My bowel motions are still not ideal and "poo inspection" is still a big intrusion into daily living; sometimes that is more stressful than the D management. But I'm alive and enjoying that state!

 

[Proud to be erratic]

I agree with @eggyg I still don't always get it right. That's the frustrating bit.

 

[Wendal]

Hi Robin.As with the others it is an individual thing and whatever works best.
Certainly agree with having some food first and no point in taking it after food has finished and space it out during the meal.
My directed rate is 2 *25k capsules per snack and 3 per meal and that works fine for me.In fact I am not the best example as I don’t take any if having a coffee or even a small snack like a biscuit or slice of toast and even have missed meals where I have forgotten to take it with me.
My pancreas may be producing some exocrine enzymes and no doubt when I started taking the Creon about 18 months ago when I changed my diet much more back to normal it proved a real godsend but my diet now is very much normal and quite high fat and I don’t have any particular issues.
So it does vary a lot and good luck in the future.

 

[Robin]

Thank you for the helpful and details replies, @eggyg , @Proud to be erratic and @Wendal , that’s really useful, and I’ve passed it on.

 

[martindt1606]

Hi little late to the show but have spent the morning trying to figure out how to get hold of CREON and / or Nutrizym. I have used CREON for over 20 years and my current routine is: 1 tablet omeprazole (breakfast and dinner) 10 minutes before eating, 2 capsules CREON 25000 before eating, 18 capsules spread throughout the meal (taken 2 at a time other wise you drink too much water). If I have unprocessed Pork or Beef, a high fat meal, a creamy dessert then I will take an extra 4 - 6 capsules. I don't take creon when looking to correct a hypo eg jelly babies, haribo, biscuits but do take 4 capsules with milky coffee and cream cakes. Note I don't take CREON with tea. Your relative needs to check with the cancer team if omeprazole is required, every time i see a new GP they say I should not be taking it but then they see I am on PERT and change their minds. You cannot take too much Creon but if you take too little it is very obvious immediately and your relative needs to adjust dosage and learn from experience.

 

[Robin]

Hi little late to the show but have spent the morning trying to figure out how to get hold of CREON and / or Nutrizym. I have used CREON for over 20 years and my current routine is: 1 tablet omeprazole (breakfast and dinner) 10 minutes before eating, 2 capsules CREON 25000 before eating, 18 capsules spread throughout the meal (taken 2 at a time other wise you drink too much water). If I have unprocessed Pork or Beef, a high fat meal, a creamy dessert then I will take an extra 4 - 6 capsules. I don't take creon when looking to correct a hypo eg jelly babies, haribo, biscuits but do take 4 capsules with milky coffee and cream cakes. Note I don't take CREON with tea. Your relative needs to check with the cancer team if omeprazole is required, every time i see a new GP they say I should not be taking it but then they see I am on PERT and change their minds. You cannot take too much Creon but if you take too little it is very obvious immediately and your relative needs to adjust dosage and learn from experience.

Thank you, that’s useful. I'm pretty sure he’s on Omeprazole as well.