Possible Creon side effects: What helped you?

Posted by ajh5285 @ajh5285, Feb 14, 2023

I have a variety of Side Effects that are all listed as possibly related to Creon, the most troublesome being gas which seems to last hours. The NP I saw in the last week or so invited me to make a trial of not taking any Creon to see what happens.

Has anyone else had any experience with this approach?
Would you recommend it?

If I were healthy, I would be more willing to be adventurous...

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I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

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@crickard70

I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

Jump to this post

I have been told by the dietician to take a bite of food and then take the Creon. Sounds like that method works for you.

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@crickard70

I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

Jump to this post

Thanks for sharing.
I too have all kinds of trouble with Creon that I'm taking for pancreatic insufficiency as the result of inoperable pancreatic adenocarcinoma.
I have followed the generic package insert online, which says consult your prescriber if you're having symptoms. I did that and the answer depended on who was answering. The answers were (1) from a NP - stop taking Creon to see if the symptoms go away (2) from a new pharmacist - try simethicone (3) from my new oncologist - to increase the dose to 3 capsules per meal for large meals or meals with a lot of veggies, to counteract the gas and bloating. Currently I'm taking one Creon before starting to eat, and 2 up to 15 minutes after I finish.
I think it's an improvement although I've only been doing the increased dose for a few days.

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@ajh5285

Thanks for sharing.
I too have all kinds of trouble with Creon that I'm taking for pancreatic insufficiency as the result of inoperable pancreatic adenocarcinoma.
I have followed the generic package insert online, which says consult your prescriber if you're having symptoms. I did that and the answer depended on who was answering. The answers were (1) from a NP - stop taking Creon to see if the symptoms go away (2) from a new pharmacist - try simethicone (3) from my new oncologist - to increase the dose to 3 capsules per meal for large meals or meals with a lot of veggies, to counteract the gas and bloating. Currently I'm taking one Creon before starting to eat, and 2 up to 15 minutes after I finish.
I think it's an improvement although I've only been doing the increased dose for a few days.

Jump to this post

I’ve had Whipple surgery and chemo for stage 3 pancreatic cancer. I also take creon and was advised to base dose on my weight ( the body requires 500-2500 units of creon per kg of body weight, or 300-1800 units per gram of fat/protein. Insufficient dose of creon will result in gas, bloating, diarrhea; sufficient will result in darker stools. At this point I am taking close to the upper limit. It is almost impossible to overdose on creon, so will continue to increase my dose. This has been well tolerated. I have slowly been regaining weight. Good luck and best wishes to you!

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@crickard70

I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

Jump to this post

I am so happy for you, the whole pancreatic journey is hard enough. Keep up the good work. I am having issues with the Ceron, the more I take I get bowel dumping and end up at er for dehydration, I have tried a natural supplement but made my CA-19 go high so oncology said I have to take the Ceron. So glad you’re gaining weight, I can’t. Thank you for your reply

REPLY
@ajh5285

Thanks for sharing.
I too have all kinds of trouble with Creon that I'm taking for pancreatic insufficiency as the result of inoperable pancreatic adenocarcinoma.
I have followed the generic package insert online, which says consult your prescriber if you're having symptoms. I did that and the answer depended on who was answering. The answers were (1) from a NP - stop taking Creon to see if the symptoms go away (2) from a new pharmacist - try simethicone (3) from my new oncologist - to increase the dose to 3 capsules per meal for large meals or meals with a lot of veggies, to counteract the gas and bloating. Currently I'm taking one Creon before starting to eat, and 2 up to 15 minutes after I finish.
I think it's an improvement although I've only been doing the increased dose for a few days.

Jump to this post

Thank you for responding and glad this is helping you and continues to help. I was in stage 4 had the Whipple, chemo and radiation, I am 2 years under control just cannot get this enzymes under control. Too much Ceron I get bowel dumping and end up in er for dehydration. I tried a natural supplement and it raised my CA-19 so back to Ceron. I don’t know what to do! Thank you

REPLY
@crickard70

I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

Jump to this post

A bit of a tangent, but the gas and bloating from not having the Creon dose just right adds complications to trying to figure out what to wear for pants.
I have to avoid anything that rides too high on my belly because that adds to the low level pain from the tumor itself - an unpleasant constrictive sensation.
Ideally pants would also have ribbed knit cuffs, to keep me from tripping since my feet are numb a lot of the time ("Chemo Feet") and I get in trouble if I'm not watching where I'm putting them.
Anyone have a recommendation for low rise pants with ribbed knit cuffs for a short woman? (5"4" weight 127 lbs, when last checked 10 days ago)

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@crickard70

I have been struggling taking Ceron, stomach cramps all over discomfort. By mistake I took a few bites of for then took the enzymes, and had no stomach discomfort. Does anyone else have this problem? I have tried other enzymes but same issues. Fingers crossed this works!

Jump to this post

I usually wear a night shirt while I am home because of the same problems. I wear leggings from Kohl’s and have a comfortable pair of leggings from Talbots they have a 2 inch elastic band and I get petite inseam 26 inches. I get a size larger and have no problem, but as soon as I get home I remove. Maybe you could have a seamstress cut the waistband and sew a piece of Velcro? Just a thought. Good luck, this is a horrible disease 🥲

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I am taking Creon 36000 per meal for two weeks now and now I have blurred vision, one of the side effects lists also bloating and gas. How does one handle these?

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For bloating and gas, the OTC products Phazyme and Gad-X with Simethicone are helpful. If consuming high-fiber vegetables like broccoli, peas, corn, cabbage, cauliflower, Brussels sprouts, they require the enzyme alpha-d-galactosidase for digesting them. It is not blended into any pancrealipase. The OTC product Beano is alpha-d-galactosidase and will prevent gas.

One 36K capsule might not be enough enzymes for your particular diet. An on-line dosing calculator will be helpful in determining the amount of pancrealipase required.

https://digestthis.ca
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