Adding digestive enzyme supplements: What's your experience?

Posted by djfone @djfone, May 2 3:42pm

My husband is 8 weeks post Whipple. Not tolerating food very well. MD wants to add digestive enzymes to regimen. Any experience with them?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for valerina30 @valerina30

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

Jump to this post

@valerina30 That's no fun. Did you consider any of the suggestions from @stageivsurvivor?

REPLY
Profile picture for stageivsurvivor @stageivsurvivor

@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.

Jump to this post

@stageivsurvivor
This is very helpful-thank you for posting.

REPLY
Profile picture for stageivsurvivor @stageivsurvivor

@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.

Jump to this post

@stageivsurvivor
That is great information and confirms I am doing some things correctly. I take my Creon with meals, usually right before my first bite of food (therefore “ before” meals). When eating out, sometimes I forget the Creon until a few bites into my meal. It sounds like taking it during a meal isn’t a problem. I’m going to try taking one before first bite and one during meals, especially if I eat something that may be problematic.

REPLY
Profile picture for djfone @djfone

@tomrennie
Zenpep seems to be helping my husband.

Jump to this post

@djfone That's great. How is it helping him? What has improved?

REPLY
Profile picture for matt2024 @matt2024

Hi @djfone - sorry to hear your husband is having trouble with food post his surgery. I have been using Creon for almost seven years now since having a total pancreatectomy in 2019. I use three 36,000 unit Creon capsules with meals and one for snacks and has really worked out well for me.

Sometimes I will take an extra one with a meal if it is a higher fat content but generally can eat anything I want as long as I watch my carb load since the resultant diabetes from the surgery. I will tell you that Creon is expensive but AbbVie, who makes Creon, offers support and discounts at https://www.creonhcp.com/patient-support if you would like to learn more about their offerings.

Take care,
- Matt

Jump to this post

@matt2024
Hi Can you please share what state was your tumour when you have total pancreatectomy and did you have chemotherapy?

I had total pancreatectomy 7 weeks ago and is waiting for my chemotherapy.

REPLY
Profile picture for joeseah @joeseah

@matt2024
Hi Can you please share what state was your tumour when you have total pancreatectomy and did you have chemotherapy?

I had total pancreatectomy 7 weeks ago and is waiting for my chemotherapy.

Jump to this post

@joeseah - Hi there! Hope you are recovering well from surgery! It is a major one and took me a bit to get back into the swing of things.

I had 4 pNET tumors ranging from 2.5 cm to 4.5 cm with many small tumors present. I had 13 lymph nodes removed and only one showed malignancy so I did not require chemotherapy. I was home after 6 days in the hospital and went back to work remotely after two weeks.

The biggest challenge was balancing the diabetes with the pancreatic enzyme supplements. How are you doing with your recovery? Happy to share my experiences if it helps.

Take good care of yourself

- Matt

REPLY
Profile picture for zacheth2 @zacheth2

My husband, diagnosed with pancreatic cancer November 1, 2025 and hopefully having a Whipple in the next month, has been on Creon since that time. It has allowed him to eat and digest food MUCH better. He takes one capsule at the beginning of a meal and one in the middle of the meal. His tumor is in the head of his pancreas and his billiary duct was clogged so he has a stent in place.

Jump to this post

@zacheth2
Hi,
Your husband’s case sounds very similar to mine. My PA was squeezing off my bile duct and I became jaundiced. I had a whipple to remove the head of the pancreas, etc. I do take Creon and it helps some. However I noticed lately I am very tired. My recent lab work showed low RBC and high CO2 so I suppose I am not absorbing iron. I’ll discuss at my next oncologist appt. I take Creon with my first bite of food. I will add one in the middle of my meal. I wish I could lose weight. I’ve gained after chemo was done.

REPLY
Profile picture for matt2024 @matt2024

@joeseah - Hi there! Hope you are recovering well from surgery! It is a major one and took me a bit to get back into the swing of things.

I had 4 pNET tumors ranging from 2.5 cm to 4.5 cm with many small tumors present. I had 13 lymph nodes removed and only one showed malignancy so I did not require chemotherapy. I was home after 6 days in the hospital and went back to work remotely after two weeks.

The biggest challenge was balancing the diabetes with the pancreatic enzyme supplements. How are you doing with your recovery? Happy to share my experiences if it helps.

Take good care of yourself

- Matt

Jump to this post

@matt2024
Thanks Matt. I am slowly recovering. I had 19 lymph nodes removed an 3 show malignancy so my consultant suggested adjuvant chemotherapy.
I am trying to put on some weight before the Chemotherapy.
Joe

REPLY
Please sign in or register to post a reply.