Adding digestive enzyme supplements: What's your experience?

@tomrennie
Thank you! 5-FU, Oxaliplatin, Irinatecan

@marymichaels do you have a Nurse Ambassador with Abbvie? Mine has been super helpful. I had Whipple surgery Nov 2024 and started Creon in Dec. It's been a game changer. I take three 24K capsules prior to my 3 meals daily and 1 or 2 with snacks. I was taking 2 capsules before meals and had some issues with diarrhea. My Oncologist suggested 3 capsules before meals and that made all the difference for me. I hope you can find the perfect dose!! Good luck!

@baravelli
Not yet. I think they have been trying to get me. I returned the call today & hopefully they will call back. Thanks so much for your encouragement!

@baravelli
Thanks for your response.
I recently completed the application for AbbVie and I haven’t been accepted yet-so I do not have a nurse ambassador yet. My doctor increased my dosage yesterday.

@djfone Any luck with the Nurse Ambassador?

@marymichaels I have been with Abbvie since 2020 and their assistance program and easy access when contacting them is far better than the other companies I've been involved with. I have held for up to 3 hrs for other assistance programs. Hope you hear from them soon!

@djfone
I had that chemo, too, for 24 weeks, but it was before my Whipple surgery. Chemo can be tough. Now I take Creon and lactase and add Beano when I eat broccoli. It has helped my bloating somewhat. Reading about enzymes here makes me wonder if I’d have better results taking more than one Creon before meals.

@sara53
From what I'm reading everyone's dosing is individual according to your needs. We are just starting the enzymes so it's too soon for us to tell. The insurance company changed us to Zenpep. So we'll see. See what your MD recommends or a dietitian/nutritionist.

@sara53 Pancrealipase should not be taken before meals and all the manufacturers and their information make this very clear. Pancrealipase is to be taken with food at the start of a meal and then take any additional capsules spaced out through the duration of the meal. The objective is to mimic how the pancreas functions when it is healthy…that is it produces and secretes the digestive enzymes in response to food entering the small intestine where a hormone is secreted into the circulation and picked up by receptors on acinar cells of the pancreas.

When you take pancrealipase ahead of the meal without the presence of food, it gets activated immediately. It doesn’t remin in your GI tract waiting for food to bind to and digest. The enzyme activity begins getting depleted leaving less enzymes for when they are needed to digest food. This is why you take enzymes through the course of the meal so they adequately mix and digest the food.

Optimization of pancrealipase is key and the amount for each meal will differ based on the amount of carbohydrates, fats nd protein contained in the meal. To make this process easier and accurate, use the pancrealipase dosing optimization calculator at pertcalculator. org. If Zenpep is not listed, use the closest concentration of Creon for calculating the amount of Zenpep to take, If you take 40K Zenpep, select Creon 36K.

If high gastric acid is an issue, a Proton Pump Inhibitor like Omeprazole will suppress gastric cid secretion and result in the pancrealipase working better. This is because enzymes work most efficiently in an alkaline pH, not an acidic environment. When a pancreas is impaired, not only is its ability to produce digestive enzymes is effected, but also the process of producing carbonate that flushes the pancreatic ducts and making the small intestine alkaline for the enzymes to activate and work.

I had horrible stomach pains the next morning when I first took creon. Now I won’t take it cause it hurt so bad. What to do now