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@colleenyoung

@beachdog, you're wife is not the only person who cannot tolerate Creon. @treadmillann also mentioned having a terrible reaction to Creon. She switched to over-the-counter papaya enzymes, but unfortunately the stool issues didn't subside with that alternative either. I'm tagging @marvinjsturing @cindee60 @kjrita and @tracyweis so they can share their experiences too.

Beachdog, how is your wife's appetite and calorie intake?

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Replies to "@beachdog, you're wife is not the only person who cannot tolerate Creon. @treadmillann also mentioned having..."

My husband has been taking creon since last June. We always assumed the diarrhea was due to chemo, but maybe not since it has continued off and on since chemo ended in December. This is the first time I've heard that maybe this enzyme might be the cause? Does anyone know if the Pure Encapsulation works better? You'd think the docs could suggest trying something different to combat this problem rather than us trying to figure it out on our own. When we paid $1600 in January for John's first Creon prescription of 2020 (insurance deductible had not been met yet), many friends suggested I try mail order from Canada and even Sweden - same creon pills for one tenth the cost! I have not resorted to that yet since our supply is good but am keeping the info handy just in case. John's Whipple procedure last week went well and we won't know for a few weeks yet if he can discontinue using creon. Lots to balance!

@colleenyoung My wife has a combination of forcing herself to eat because she has to and some minimal appetite because she's using medical marijuana. She also takes megace and marinol (laboratory thc) which seems to provide no benefit at all. She's eating 6 meals and snacks per day now with calories estimated to be 1000-1500 but the first month she probably didn't even get 500-1000 per day. I have no question that she has severe malnutrition. A week of eating well with intermittent diarrhea she might gain a pound or two but a day of diarrhea can set her back 2-3.

@beachdog My doctors started me on Creon immediately after my Whipple. I have been on it for 6 years now. I asked my nurse practitioner at Mayo about switching to Pure Encapsulation or other over the counter enzymes. She checked with a pharmacist. I was told that I could try other enzymes but I should not use anything that is not USP certified. I was checking not because I could not tolerate Creon but because of the cost of Creon. I have had to adjust my dosage from time to time, but I have used nothing but Creon and it has worked for me.