my mum had total gastrectomy in 2012 but since suffered from pancreatitis as a result The hospital started her on Creon to help with digestion of food, 2 capsules twice a day, I am messaging to see if any of the members of OPA have experience with pancreatitis and how they have been getting on with calculating dosage of creon with meals, because of the smaller and frequent meals, sometimes 1 meal can take her up to an hour to finish or more, and she hasn’t had much input from the hospital in how to work out the dose of Creon,
what are the experience from other members, if you are willing to share your experiences with us, it would be very helpful.
thank you
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Strawberry23
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hi, is she taking 25000 or 10000 tablets? If she has chronic pancreatitis, I’d have thought she’d be taking creon with all meals, likely 2 x 25000 for a larger meal and 1 x 25000 for a smaller one. There is little downside to taking a higher dose of creon, especially if she has malabsorption issues.
Thank you for your reply, she is taking the 25000, at the moment she is taking 2 capsules with lunch and dinner as that was what she was discharged with chronic pancreatitis but there was no follow up, about dose issues or changes, so we are just looking at what experiences other have had with getting the dosing right and their experience.
Think about how much fat, protein or carbs are involved as that should determine dose. I’ve heard of people needing to take 3 tablets. Question is, is it helping her? If not, go see a doctor.
I had a total gastrectomy in June 2012 and have been on Creon tablets for a long time, I have had various advise as to how many and when to take, I was looking up what I ate and using for every 10g of fat took 1 creon, however this can be a pain the the but, then told take 3 after each main meal so now do that with a total of 9 a day, you should take them at the time of eating. Hope it helps. I am taking the 25000 tablets.
thank you for your reply. That’s been very helpful, I think we will look at exactly what is eaten and how much fat, my mum also takes the creon 25000 currently 2 capsules with lunch and dinner, but we don’t think that’s quite enough at the moment, so will need to take with every meal.
Just out of interest do you take creon at the start of your meals or straight after?
I used an app alled Carbs & Cals that gives you the fat and other content of the food, became a bit of a pain though doing it every time I ate so now take 3 with each meal morning, lunch and dinn er for 9 a day and take them with the food.
hi I used to take creon to get my fat absorption up. I would take 1 -3 tabs with a meal not before or after but during as when you eat small meals with little Or no stomach the creon needs to be with the food. I took it with all meals at first and then with all meals with fat it and adjusted the dose as I got used to using it. It must have helped as my poo stoped floating and I did put on weight.
that’s really helpful to know, thank you so much. My mum has this issue with the small meals so I think it would be better for to take as you do during the meal.
I am on creon following Ivor Lewis op ( lost part of stomach and part of food oesophagus)The advice I was given was
2 - 3 with a meal, spread out during the meal if it takes over 15mins.
1 with a snack
1 with any drink that is more than half milk.
This works for me and uses about 10 a day. 300per month on prescription.
Whether the GP will prescribe this without instructions from a dietician I don't know. I was initially being prescribed 100 to last a month, which is useless. They have to be taken with food as they are digestive enzymes. . Your Mum should have seen a dietician so go back to them, or demand to see one. I think this may be a thing GPS don't come across much so they need specific instructions. I don't have pancreatitis but do have issues digesting and absorbing nutrients because of a compromised system. I take 2 with meals at home and one with a snack or a latte. If I am out for a meal I have one with each small course. Hope this helps
thank you so much, this has been really helpful, unfortunately she was never followed up after she left hospital with creon 2 years ago, and the GP was not too clear about dosing and adjusting dose, so it’s good to know we can ask to speak to the dietitian and adjust.
It’s also good to know she can spread out the creon over the meal if it takes a long time to finish, as she has been worried by this.
Yes your surgery should either have a dietician or access to one so do ask. It's dreadful that there has been no follow up from the hospital. I am still under dietician and gastroenterologist albeit yearly phone calls. Sounds like a big omission because of COVID maybe. Anyway good luck. I have gained half a stone in the year I have had creon and my ferritin levels are staying up better. x x
This has been very helpful to read. Like you, my dad hasn't really been followed up since his surgery 6 years ago, after being put on Creon after suffering early dumping syndrome. He now has Reactive hypoglycemia, so every time he has carbs his blood sugar rises, and if it's too many carbs or the wrong kinds, it will trigger his pancreas to overproduce insulin and shoot him way down into dangerous hypoglycemia lows. Question - any of you have this, and if so, are you still taking creon? Are you still taking acarbose? they seem to contradict and dad is still taking the creon, but not sure if he should still. With all the proteins and fats the reactive hypoglycemic diet requires with eating every meal and snacks, I can see why continuing Creon would be helpful....
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