• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Creon dose

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Chris88

Active Member
Relationship to Diabetes
Type 3c
Pronouns
He/Him
Hi all
Recently has total pancreatectomy due to pancreatic cancer so now Type 3c.
Have completed chemotherapy and given all clear yesterday by oncologist.
Current meds : Abasaglar, Humalog, atorvastatin, omeprazole, Creon 25000 caps
Hba1c 7.0%, bmi 24.9 , bp 118/79
My problem: what is the correct dose of Creon?
Opinions vary but looking for advice from other Type 3s: is 18 caps with each meal too much?
 
Pleased you got all clear, such a relief for you & family.

Use creon but not type 3c, usual dose for meals is 3 sometimes 4x25000 dose. Expect people with type 3c will be higher, but consultant said on diagnosis that you need what you need & depending on meal doses will vary.
 
Hi all
Recently has total pancreatectomy due to pancreatic cancer so now Type 3c.
Have completed chemotherapy and given all clear yesterday by oncologist.
Current meds : Abasaglar, Humalog, atorvastatin, omeprazole, Creon 25000 caps
Hba1c 7.0%, bmi 24.9 , bp 118/79
My problem: what is the correct dose of Creon?
Opinions vary but looking for advice from other Type 3s: is 18 caps with each meal too much?
 
pancrease complete shutdown . Type 3 treated as type 1 on abasaglar,omprazole,tamlosin. Insulin 22 units once a day. creon 2 breakfast 1 lunch 3 dinner 5 in total. 18 seems a lot but it is what it is if that is what you have been told. I believe it is based on your age and weight your hba1c looks ok blood .p good.
 
Opinions vary but looking for advice from other Type 3s: is 18 caps with each meal too much?
That is one heck of a lot of Creon.
If you take the Creon Correctly as in read the patient insert then it's doubtful you would need even a quarter of that amount.
Top amount I take and it has to be a fatty meal to need it is 4 Creon capsules.
 
Thank you for your replies.
Dietician said I would need at least 10x Creon 25000 with each meal but this ends up with fatty stools on this dose. I understand you take whatever is necessary but most people including medics appear unsure what advice to give. I need advice from someone in a similar post, hence my plea for advice from Type3 c diabetics
 
Hi @Chris88 from a fellow Type 3c.
Great to hear the good news about your all clear.

I'm on a much lower Creon dose than you but have understood that you need what you need to prevent symptoms.
Are you also on a PPI like omeprazole as I understand this can help the Creon action?

Tagging @Proud to be erratic who was on high Creon doses and may be able to give you a bit more input from his experience.
 
Thank you soupdragon; my PPI is omeprazole 20mg daily.
Hope to hear from Proud to be erratic soon
 
Thank you soupdragon; my PPI is omeprazole 20mg daily.
Hope to hear from Proud to be erratic soon
How are you taking the creon?
 
Chris88 I am taking 16 capsules as a starting point for a meal, adding extra based on fat content eg cheese sauce with pasta rather than tomato sauce. 18 seems a high starting point as it has taken me 20 years to build up to 16+ (gall bladder removed 2003 followed by Total Pancreatectomy in 2010). You cannot take too much Creon and I increase mine based on an identifiable change to stool output over a week or two...... The main issue with such large doses is that GPs do not understand our problems and every 18 months or so cancel the repeat prescription because you cannot be using so many (happened again yesterday - looking forward to calling them on Monday.........)
 
At last…….thank you Martin dt1606, someone who understands.
I am currently taking 15 to 16 caps with each meal but wanted to try bigger doses to see if bowel movements improve.
I have a prescribing pharmacist on my side at surgery so quantity is not an issue particularly as GP was slow to expedite CT scan.
 
Thank you soupdragon; my PPI is omeprazole 20mg daily.
Hope to hear from Proud to be erratic soon
Hello @Chris88,

I was getting through 10 tubs x 100 of 25k Creon monthly, ie one tub every 3 days. That was also my starting repeat prescription on discharge from Hospital after my Whipples. But I recently realised that my usage is slightly reduced and a tub can last 4 days.

I had my total panc'y in Feb 2020 and because of Covid lockdown then chemo, I got very little face to face advice on my DM or my bowel problems. But I was told, by dieticians from 2 NHS Trusts and Macmillan that one can't overdose on Creon. So I have used Trial and Learning to find a dosage to suit me. I still have the occasional 'off day', 3 yrs on, when my body just 'dumps'; I can't recognise any early warning symptoms for these off days or find subsequent explanation - which is very frustrating.

Creon is needed principally for digestion of fatty foods, but not exclusively. My pancreatectomy was categorised as pylorus preserving, but there must have been some element of pylorus surgery (resection?), just to create the new digestive configuration after my Whipples.

So my starting point is with main meals I take 1 x 25k capsules for every 10 gms of carbs. There is NO science to that, ie no correlation between carbs and need for Creon. I just find that a useful start point, rather than trying to evaluate the fat content of each meal. If the meal is very fatty I take one or 2 extra capsules. My BMI and cholesterol levels are very good so I don't need to avoid fatty foods and I have oil or butter whenever possible with any meal and double cream with porridge or cereals as well as in my coffee. So all meals, and most snacks are high fat content. I have a capsule with a coffee and 2 if the snack is coffee and a cookie.

I never have Creon when I'm eating Jelly Babies for hypos - but one member advises that Creon is also needed then. I try to keep the JBs in my mouth and let them start digestion from saliva, which is apparently even quicker than digestion in the stomach for hypo response.

From observations made in this forum by others who have had partial or total pancreatectomies there is considerable variation in what others need by way of Creon. From very little to a lot more than myself - which my Gastroenterologist described as 'Industrial Quantities' when writing his report after a Consult for my malabsorption and a period of very debilitating and embarrassing lack of bowel control. Perhaps there is a large element of 'how much surgical damage' and individual uniqueness in determining quantity of Creon needed.

I think you have to find what works for you and use Trial and Learning. Good luck.
 
Last edited:
Thank you Proud to be erratic for your illuminating contribution.
As you say it appears to be trial and error and life long learning to achieve satisfactory bowel function using Creon.
I had wondered about the effects of salivary amylase and shall chew food for longer to ensure I maximise this benefit.
I intend to eat what I want , use carb counting for insulin doses and my best guess for Creon dose.
Thanks
Chris
 
Thank you Proud to be erratic for your illuminating contribution.
As you say it appears to be trial and error and life long learning to achieve satisfactory bowel function using Creon.
I had wondered about the effects of salivary amylase and shall chew food for longer to ensure I maximise this benefit.
I intend to eat what I want , use carb counting for insulin doses and my best guess for Creon dose.
Thanks
Chris
You haven't said how you take your Creon as this can be a major factor in how or if it works.
 
Hope you are able to find a dose that works for you @Chris88 - I wonder whether the totality of your pancreatectomy may influence the required dose? Some of our Type 3cs have had partial surgeries to remove the tail or similar.

You haven't said how you take your Creon as this can be a major factor in how or if it works.

How do you find it most effective @Pumper_Sue? Do you have any tips or suggestions from your experience?
 
Hope you are able to find a dose that works for you @Chris88 - I wonder whether the totality of your pancreatectomy may influence the required dose? Some of our Type 3cs have had partial surgeries to remove the tail or similar.



How do you find it most effective @Pumper_Sue? Do you have any tips or suggestions from your experience?
Creon is taken as stated in the patient leaflet which is enclosed with the Creon prescription.
 
Creon is taken as stated in the patient leaflet which is enclosed with the Creon prescription.

I found this which described itself as a PIL - https://www.creon.co.uk/-/media/creoncouk/assets/pdf/creon_pi_aebox.pdf?la=en-gb

Hopefully that might help anyone browsing who isn't sure and covers some of the same ground?

How do I take pancreatic enzymes?
The enzymes inside the capsules replace those that your pancreas is unable to produce. To work effectively, these enzymes need to be taken each time you eat, including meals, snacks and milky drinks. Take them just before you begin eating or with the first few mouthfuls of food as they need to be taken with the food/milky drink to work. If you take more than one capsule you should space them out throughout your meals.

If you are having a large meal with more than two courses, or one lasting more than half an hour, you may need to take additional enzymes with each course.

It is important that you swallow your capsules with a cold drink. Swallowing them with a hot drink (like tea or coffee) may damage them and make them less effective. Pancreatic enzymes can be damaged at high temperatures. You will need to read the information leaflet for your medicine for details about the maximum storage temperature. Do not keep the capsules in warm places such as window sills, near radiators, in the car or in direct sunlight. They may also be affected by your body heat if they are kept in trouser pockets.

How many enzymes do I take?
You will need to take enough enzymes to enable your body to digest and absorb food adequately. Your initial dose will be decided by your doctor or healthcare professional. This dose may be gradually increased until your symptoms are controlled. You may need more enzymes to help you digest very fatty foods (such as fried food, takeaways and foods containing lots of cheese, chocolate and pastry).

Your dietitian will explain how you can tell how many enzyme capsules are needed with each meal or snack. This includes even small snacks and any drink which is at least half milk.

It is important that you take your enzymes with all your meals and snacks. Without them, symptoms of malabsorption may recur along with weight-loss and vitamin and mineral deficiencies. Sometimes you can experience deficiencies without other symptoms, so it is important you don’t stop taking your enzymes even if you feel you no longer need them.

Other medications such as painkillers, can mask some of the symptoms of malabsorption, making it difficult to adjust your enzyme dose. Speak to your doctor or dietitian if you experience symptoms like constipation.

Reducing your pancreatic enzyme dose may seem to help with constipation, but usually does so by causing malabsorption. This will cause malnutrition. It is better to take a laxative or take other steps to treat constipation in this instance.

What is my dose?
The dose you need is individual to you. It depends on your condition and the types of foods you eat. You may find that your starting dose is increased until your symptoms are controlled.

Your dietitian or doctor will help you adjust the dose of enzymes to ensure your symptoms are under control. It is important that this is done gradually

When not to take enzyme supplements

■ If you miss a meal. Do not take enzymes on an empty stomach
■ With drinks that are less than half milk such as tea, non-milky coffee, fruit squashes and fizzy drinks
■ If you are eating small quantities of any of the following:
– Fruit (other than avocado or pear)
– Vegetables (other than potatoes, beans and pulses)
– Dried fruit
– Sugary sweets: jelly babies, wine gums, dolly mixtures, marshmallows, fruit pastilles, chewing gum, and mints
■ If you take a very small quantity of another food, for example:
– An individual chocolate
– A small plain biscuit

Some people can manage larger quantities of low fat foods without enzymes. This can be assessed by your dietitian, doctor or nurse specialist once you have established the dose that works best for you.

It is important that you take your enzymes with all other meals and snacks.
 
I found this which described itself as a PIL - https://www.creon.co.uk/-/media/creoncouk/assets/pdf/creon_pi_aebox.pdf?la=en-gb

Hopefully that might help anyone browsing who isn't sure and covers some of the same ground?

How do I take pancreatic enzymes?
The enzymes inside the capsules replace those that your pancreas is unable to produce. To work effectively, these enzymes need to be taken each time you eat, including meals, snacks and milky drinks. Take them just before you begin eating or with the first few mouthfuls of food as they need to be taken with the food/milky drink to work. If you take more than one capsule you should space them out throughout your meals.

If you are having a large meal with more than two courses, or one lasting more than half an hour, you may need to take additional enzymes with each course.

It is important that you swallow your capsules with a cold drink. Swallowing them with a hot drink (like tea or coffee) may damage them and make them less effective. Pancreatic enzymes can be damaged at high temperatures. You will need to read the information leaflet for your medicine for details about the maximum storage temperature. Do not keep the capsules in warm places such as window sills, near radiators, in the car or in direct sunlight. They may also be affected by your body heat if they are kept in trouser pockets.

How many enzymes do I take?
You will need to take enough enzymes to enable your body to digest and absorb food adequately. Your initial dose will be decided by your doctor or healthcare professional. This dose may be gradually increased until your symptoms are controlled. You may need more enzymes to help you digest very fatty foods (such as fried food, takeaways and foods containing lots of cheese, chocolate and pastry).

Your dietitian will explain how you can tell how many enzyme capsules are needed with each meal or snack. This includes even small snacks and any drink which is at least half milk.

It is important that you take your enzymes with all your meals and snacks. Without them, symptoms of malabsorption may recur along with weight-loss and vitamin and mineral deficiencies. Sometimes you can experience deficiencies without other symptoms, so it is important you don’t stop taking your enzymes even if you feel you no longer need them.

Other medications such as painkillers, can mask some of the symptoms of malabsorption, making it difficult to adjust your enzyme dose. Speak to your doctor or dietitian if you experience symptoms like constipation.

Reducing your pancreatic enzyme dose may seem to help with constipation, but usually does so by causing malabsorption. This will cause malnutrition. It is better to take a laxative or take other steps to treat constipation in this instance.

What is my dose?
The dose you need is individual to you
. It depends on your condition and the types of foods you eat. You may find that your starting dose is increased until your symptoms are controlled.

Your dietitian or doctor will help you adjust the dose of enzymes to ensure your symptoms are under control. It is important that this is done gradually

When not to take enzyme supplements

■ If you miss a meal. Do not take enzymes on an empty stomach
■ With drinks that are less than half milk such as tea, non-milky coffee, fruit squashes and fizzy drinks
■ If you are eating small quantities of any of the following:
– Fruit (other than avocado or pear)
– Vegetables (other than potatoes, beans and pulses)
– Dried fruit
Sugary sweets: jelly babies, wine gums, dolly mixtures, marshmallows, fruit pastilles, chewing gum, and mints
■ If you take a very small quantity of another food, for example:
– An individual chocolate
– A small plain biscuit


Some people can manage larger quantities of low fat foods without enzymes. This can be assessed by your dietitian, doctor or nurse specialist once you have established the dose that works best for you.

It is important that you take your enzymes with all other meals and snacks.
@everydayupsanddowns - good explanation, which i thought could be enhanced by highlighting some of the points which are related to the more common questions eg how many to take? we are all individuals....The final point on sugary sweets and a small biscuit are very important - when worrying about a HYPO do not worry about finding the Creon and wondering how many to take. Hypo treatment should not need Creon...
 
Last edited by a moderator:
At last…….thank you Martin dt1606, someone who understands.
I am currently taking 15 to 16 caps with each meal but wanted to try bigger doses to see if bowel movements improve.
I have a prescribing pharmacist on my side at surgery so quantity is not an issue particularly as GP was slow to expedite CT scan.
Chris88 - just give me a shout if you have any post TP questions. I'm 13 years in front of you so have hopefully built up some experience on living with Creon and living as a diabetic. I did MDI for 3 years before starting on a pump (couldn't get long acting insulin to work effectively), and have had CGM integrated with the pump for the last 4 years. If I could turn back time i would have loved to have CGM from day 1 as this may have helped resolve the issues with the long acting insulin and made the early days a little easier.
 
Thanks for adding the highlights @martindt1606

I've tweaked your post so that your efforts aren't hidden in the quoted text 🙂
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top