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Creon - am I taking too much or too little?

Posted by stillaround @stillaround, Sep 27, 2025

Hi - pancreatic cancer person here. (Surgery 14 years ago removed tail, recurrence on head a year ago, currently in remission after treatment including hi-dose radiation.) Started Creon several weeks ago. I THINK I am taking enough as I am finally putting weight on, stools are proper color etc. But I am quite bloated with distended belly and a bit constipated. If everything else is good could this mean I'm not taking enough? Or does constipation with normal stools mean I'm already taking too much?

I take 36,000 with my smallish calorie-dense meals, my weight is 108. The PERT calculator indicates I need closer to 48,000 at breakfast but other meals I'm in range.

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casey1959 | @casey1959 | Sep 16 9:18pm
In reply to @katieliz "This topic is so confusing, I would like to know the correct amount of the enzymes..." + (show)
Profile picture for katieliz @katieliz

This topic is so confusing, I would like to know the correct amount of the enzymes to take also. They upped my dosage as I was not gaining weight, but I think I’m now maintaining so that’s better than continuing losing - starts to feel like I am just going to fade away when it’s a lower # every time I am weighed (I am 5’ 7” and I weight 109 or so now). But when they upped my dosage (I was taking ZenPep, 20,000 IUs at meals, 10,000 for snacks) they okayed me to order a different, OTC med - Vital Nutrients, so take one of these at my three main meals along with the ZenPep. Much cheaper, $40/month. Now I am wondering what is the difference? - if much - between the ZenPep and cheaper OTC med? I wouldn't have known about the OTC cheaper med if the Dr hadn't recommended it, so they must have some faith in it. Hard to find answers for these medications. And is there much difference between Creon and ZenPep? I think Creon may be more expensive than ZenPep, I pay $194/month from the hospital mail order pharmacy - I’ve seen much higher $$ for both, the mail order option helps us (initially was paying $394/month).

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@katieliz After doing research we were helped by the Social Worker at Hubby's Cancer Center. He gets his Creon through the manufacturer at no cost. He's lost so much weight. Hoping it will help. Wish you the best.

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Turkey, Volunteer Mentor | @tomrennie | Aug 31 9:42pm
In reply to @valerina30 "Hi yes my doctor ordered before the actual approval day but think he had to do..." + (show)
Profile picture for valerina30 @valerina30

Hi yes my doctor ordered before the actual approval day but think he had to do it again, originally around 2 weeks but waiting on insurance now. So many people want this. I don’t have mutations but I did run out of options and since it spread some. We will see.

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@valerina30 Sorry to hear that. Good luck on your request. Please let me know how it goes.

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valerina30 | @valerina30 | Aug 31 6:56pm

Hi yes my doctor ordered before the actual approval day but think he had to do it again, originally around 2 weeks but waiting on insurance now. So many people want this. I don’t have mutations but I did run out of options and since it spread some. We will see.

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Turkey, Volunteer Mentor | @tomrennie | Aug 31 1:46pm
In reply to @valerina30 "@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions..." + (show)
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@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions in my stomach now. Waiting on the new cancer pill now will you be trying it

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@valerina30 Sorry to hear about the new stomach lesions. Has your oncologist already prescribed the daraxonrasib? Since its FDA approval on 8/26/2026, I wonder if it will be easier to get than before the approval. Did your oncologist suggest a time table on when you might get it? I will not be trying it. My understanding is that it works only for RAS driven tumors. I don't have that mutation. I also have neuroendocrine carcinomas and not adenocarcinomas. My chemo regimen is completely different.

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valerina30 | @valerina30 | Aug 31 11:02am
In reply to @tomrennie "@valerina30 Good luck with the results of the cat scan. Any idea on when you might..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@valerina30 Good luck with the results of the cat scan. Any idea on when you might get them?

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@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions in my stomach now. Waiting on the new cancer pill now will you be trying it

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whipple123 | @whipple123 | Aug 14 9:55am
In reply to @stageivsurvivor "@whipple123 To optimize the dosage of Creon specific to the amount of carbohydrates, protein and fats..." + (show)
Profile picture for stageivsurvivor @stageivsurvivor

@whipple123 To optimize the dosage of Creon specific to the amount of carbohydrates, protein and fats in the meal, use the on-line dosing calculator at: pertcalculator.org

Take the first capsule at the start of the meal with food. Take additional capsules as calculated staggered throughout the meal.

If you et high fiber vegetables and legumes, pancrealipase does not contain the enzyme alpha-d-galactosidase needed to digest these oligosacchride-containing foods. The OTC product BEANO is the enzyme alpha-d-galactosidase and will digest high-fiber foods without the formation of gas or bloating.

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@stageivsurvivor
How many Beano should I take?
Vegetarian

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stageivsurvivor | @stageivsurvivor | Aug 13 9:23pm
In reply to @whipple123 "Agree. Difficult to get the right dose. I still don’t understand why Creon cause gas and..." + (show)
Profile picture for whipple123 @whipple123

Agree. Difficult to get the right dose. I still don’t understand why Creon cause gas and abdomen bloating. Even with Plain Diet
Any suggestions

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@whipple123 To optimize the dosage of Creon specific to the amount of carbohydrates, protein and fats in the meal, use the on-line dosing calculator at: pertcalculator.org

Take the first capsule at the start of the meal with food. Take additional capsules as calculated staggered throughout the meal.

If you et high fiber vegetables and legumes, pancrealipase does not contain the enzyme alpha-d-galactosidase needed to digest these oligosacchride-containing foods. The OTC product BEANO is the enzyme alpha-d-galactosidase and will digest high-fiber foods without the formation of gas or bloating.

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sara53 | @sara53 | Aug 10 9:55am
In reply to @whipple123 "Agree. Difficult to get the right dose. I still don’t understand why Creon cause gas and..." + (show)
Profile picture for whipple123 @whipple123

Agree. Difficult to get the right dose. I still don’t understand why Creon cause gas and abdomen bloating. Even with Plain Diet
Any suggestions

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@whipple123
I take Beano, which is an over the counter enzyme, with my Creon and it helps me, especially with veggies. It may help you, too.

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sara53 | @sara53 | Aug 10 9:42am
In reply to @margaretbannan1948 "Someone mentioned 'dumping' . Is that letting all the sheep out in one sitting. Like completely..." + (show)
Profile picture for margaretbannan1948 @margaretbannan1948

Someone mentioned 'dumping' . Is that letting all the sheep out in one sitting. Like completely emptying the bowel after a compulsory 15 minute sit. Whipple and creon is a whole new world of pooping. Guess I just want to know what is normal after Whipple and creon. Thank you for sharing your experience 😊

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@margaretbannan1948
Dumping refers to the stomach emptying food all at once or too fast into the small intestine. I don’t have it, so I don’t know much about it, but it doesn’t sound like a good thing. I hope that helps.

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whipple123 | @whipple123 | Aug 9 5:07pm

Agree. Difficult to get the right dose. I still don’t understand why Creon cause gas and abdomen bloating. Even with Plain Diet
Any suggestions

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