Anyone have chronic diarrhea while on digestive enzymes?

Posted by altc321 @altc321, Mar 5, 2024

Has anyone experienced chronic diarrhea using digestive enzymes like Zenpep or Creon? If so, did adjusting the dosage help?

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

Yes I have chronic diarrhea and I i’m taking creon 36,000 mg I have been eating increasing the dosage based on my doctors recommendation. It doesn’t seem to have any effect. God bless you. 🙏🏼💜🌈

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Profile picture for sonomaga @sonomaga

Just the opposite. Constipation. I have stopped taking the Creon.

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I know different things work for different people & chemo types. My husband (Stage 2b taking his 7th chemo this week) is taking: FORCE FACTOR Smarter Greens Tablets, Greens Supplement with 25+ Superfoods and Antioxidants to Improve Digestion, Reduce Stress, Strengthen Immunity, and Support Metabolism... You can get it on Amazon, Walmart etc.. Might be worth a try. I'd give it 30 days to see if it helps (recommended by a relative who is surviving cancer now).

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My husband experiencing all of the above reactions you all are having…weight loss, constipation, diarrhea, etc. I have just heard of an online tool that measures the amount of Creon you should take based on the specific meal you are eating. It is called Pertcalculator.org. Haven’t tried it yet, but thought I would pass this along.

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Just the opposite. Constipation. I have stopped taking the Creon.

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Profile picture for albie06 @albie06

I live in South Africa and have been on Creon 25000 and Creon 10000 since 2014. Unfortunatly my Medical Scheme don't cover Creon because of 2 reasons. 1. They see it as a suplement and 2. It's expensive. With the cost of living going through the roof here, I can't afford it anymore and trying to get it from Gevornment Clinics is downright impossible. When I ask the Pharmacist for cheaper alternatives, I'm told there is none. I might as well sleep in the toilet. I'm doomed.

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Hi @albie06, the expense of medications can be prohibited if not covered by insurance plans. There are alternatives, although I don't know about the price difference. See this related discussion:

- Has any one found an alternative to Creon?
https://connect.mayoclinic.org/discussion/has-any-one-found-an-alternative-to-creon/
The pharmaceutical companies often have patient assistance programs to help pay for drugs. Your oncology nurse or oncologist can help look into the program of the manufacturer of Creon (AbbVie) with you to apply for the program.

@albie06, are you on Creon as a result of a diagnosis of pancreatic cancer back in 2014?

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I live in South Africa and have been on Creon 25000 and Creon 10000 since 2014. Unfortunatly my Medical Scheme don't cover Creon because of 2 reasons. 1. They see it as a suplement and 2. It's expensive. With the cost of living going through the roof here, I can't afford it anymore and trying to get it from Gevornment Clinics is downright impossible. When I ask the Pharmacist for cheaper alternatives, I'm told there is none. I might as well sleep in the toilet. I'm doomed.

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Profile picture for xiaolung @xiaolung

I've been taking Zenpep for a few years. It costs thousands of dollars per month. And yet, all it is, is a tiny amount of pig pancreas.

The recommended dose for a small weight adult (117-179 lb) is 40,000 per meal. The recommended dose for a larger adult is 60,000 per meal.

I'm indignant. I've been limping along all this time on 25,000 per meal. Craving fats but if I eat very much of them I end up with fatty diarrhea. I called for guidance and they refused to give me any. My doctors know nothing. Not even the gastroenterologists.

I finally got a diagnosis from genetic testing at sequencing.com. $400 for your whole genome and comparison to a database of genetic disorders. You will find all your family illnesses listed there but of course, most of them won't strike you. But my dad's leukemia, the family colon cancer, the Hirschsprung's some have, minor vitamin deficiencies, and other diseases we haven't seen were all listed as highest probabilities. There were more than 40,000 lowest probabilities (which is why doctors without genetic guidance have a real problem with getting a diagnosis of the "Zebra" diseases).

Hereditary autoimmune pancreatitis.

My grandfather thought he had contracted the problem from eating contaminated beef during World War II. There are two others with the same symptoms in the extended family.

Autoimmune pancreaticitis attacks can be ended with prednisone.
That's important because the pancreatitis progressively damages the pancreas.
Same symptoms as pancreatic cancer, but it doesn't kill you early. The only unaided way to stop the pancreatitis is to exhaust your white blood cells . Which you do by not eating or drinking (except some water) for 72+ hours)

I can't get to Mayo because I can't drive up there. Not until I get cataract surgery. I'm 72.

I have a problem with both fats and proteins. Proteins cause the most pain. When I ran out of Zenpep last month, I used health food enzymes and went on a vegetarian diet. I was surprised that I could eat the higher-fat, low-protein diet. In my lifetime I've become progressively intolerent or allergic to seafood, dairy, wheat, hard boiled eggs, and unaccompanied eggs, And just recently I've been having troubles with all meats. Something seems to go right through the kidneys. Ot it could be an "allergy" that's showing up as kidney passthrough/bladder irritation. Very smelly.

Anyway, I opened up one of the Zenpep capsules to split the dose and saw how little was in there, and got online.

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I had joined Mayo Clinic Connect and can no longer connect to it. You can see from the below message I do belong. I forgot my password and tried resetting it but that didn’t work. Can you get me reconnected? I made many entries previously.
Please advise or better yet reconnect me. You sent the message to my email so I assume that is what it is.
Respectfully,Judith Bramsonbramsonjudith@yahoo.com

Sent from Yahoo Mail for iPad

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Profile picture for christinekaranges @christinekaranges

What is Zenpep like I just had a blood test and my liver is high and my doctor think it’s from the Creon I see the specialist in 2weeks Also my iron level is Realy high which is surprising as I don’t make iron and have an iron infusion every year My diarrhoea is still chronic have lost 9kgs in the last two months I watch what I eat as I am Diabities 2 controlled by diet but it has been in the 4lately which is unusual for me Have to wear nappies all day and night and my bladder gets urgent to

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I had diapers too, lately. Primarily stress incontinence of the bladder but sometimes intestinal . Urine smelt and irritated my skin.

I ran out of prescription enzymes last week and went to a no meat, no seafood, no dairy , no wheat diet and health food store enzymes and in 2-3 days the incontinence ended. No smelly urine. So, I've realized I'm not digesting the high protein food enough.

Fats aren't irritating, just pass through with or without excess. And carbohydrates are fine.
Maybe this might help.

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Profile picture for xiaolung @xiaolung

I've been taking Zenpep for a few years. It costs thousands of dollars per month. And yet, all it is, is a tiny amount of pig pancreas.

The recommended dose for a small weight adult (117-179 lb) is 40,000 per meal. The recommended dose for a larger adult is 60,000 per meal.

I'm indignant. I've been limping along all this time on 25,000 per meal. Craving fats but if I eat very much of them I end up with fatty diarrhea. I called for guidance and they refused to give me any. My doctors know nothing. Not even the gastroenterologists.

I finally got a diagnosis from genetic testing at sequencing.com. $400 for your whole genome and comparison to a database of genetic disorders. You will find all your family illnesses listed there but of course, most of them won't strike you. But my dad's leukemia, the family colon cancer, the Hirschsprung's some have, minor vitamin deficiencies, and other diseases we haven't seen were all listed as highest probabilities. There were more than 40,000 lowest probabilities (which is why doctors without genetic guidance have a real problem with getting a diagnosis of the "Zebra" diseases).

Hereditary autoimmune pancreatitis.

My grandfather thought he had contracted the problem from eating contaminated beef during World War II. There are two others with the same symptoms in the extended family.

Autoimmune pancreaticitis attacks can be ended with prednisone.
That's important because the pancreatitis progressively damages the pancreas.
Same symptoms as pancreatic cancer, but it doesn't kill you early. The only unaided way to stop the pancreatitis is to exhaust your white blood cells . Which you do by not eating or drinking (except some water) for 72+ hours)

I can't get to Mayo because I can't drive up there. Not until I get cataract surgery. I'm 72.

I have a problem with both fats and proteins. Proteins cause the most pain. When I ran out of Zenpep last month, I used health food enzymes and went on a vegetarian diet. I was surprised that I could eat the higher-fat, low-protein diet. In my lifetime I've become progressively intolerent or allergic to seafood, dairy, wheat, hard boiled eggs, and unaccompanied eggs, And just recently I've been having troubles with all meats. Something seems to go right through the kidneys. Ot it could be an "allergy" that's showing up as kidney passthrough/bladder irritation. Very smelly.

Anyway, I opened up one of the Zenpep capsules to split the dose and saw how little was in there, and got online.

Jump to this post

Good post. I got my genetic testing through a breast cancer specialist. Eyeopening and at least gives a person a clue as to where to begin a search for what the heck is going on physiologically.

A good doctor is very hard to find. There are physicians who are born with the talent for medicine. There are those who didn't have a true calling for it.

It is a roll of the dice which one you end up with. Always look at a physician as if he or she is your equal, until you find out if they are smarter than you and are dedicated to their calling.

Medicine is an art as well as a science.
You can teach science, but you cannot teach true talent and innate detective type intelligence into a physician.

Good physicians are as rare as diamonds and true talented artists.

It is our job as patients to find the diamonds.

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Profile picture for judithbramson12 @judithbramson12

I take ZENPEP. I had chronic diarrhea. I learned from this blog to take Imodium AD three times a day. After two dys the diarrhea stopped. I also raised my Zenpep from 20,000 units per everything to 40,000 units and that is working fine. I didn’t ask the doctor, but told him what I was doing and he said it was all right. My recovery consists of a lot of experimentation. If a food doesn’t work, I never touch it again. I have a same boring diet every day; however, rarely any problems unless I get upset.

Good luck. It’s a long journey to fit it to your individual needs and what your body will accept. You will get there with perseverance!

Jump to this post

I've been taking Zenpep for a few years. It costs thousands of dollars per month. And yet, all it is, is a tiny amount of pig pancreas.

The recommended dose for a small weight adult (117-179 lb) is 40,000 per meal. The recommended dose for a larger adult is 60,000 per meal.

I'm indignant. I've been limping along all this time on 25,000 per meal. Craving fats but if I eat very much of them I end up with fatty diarrhea. I called for guidance and they refused to give me any. My doctors know nothing. Not even the gastroenterologists.

I finally got a diagnosis from genetic testing at sequencing.com. $400 for your whole genome and comparison to a database of genetic disorders. You will find all your family illnesses listed there but of course, most of them won't strike you. But my dad's leukemia, the family colon cancer, the Hirschsprung's some have, minor vitamin deficiencies, and other diseases we haven't seen were all listed as highest probabilities. There were more than 40,000 lowest probabilities (which is why doctors without genetic guidance have a real problem with getting a diagnosis of the "Zebra" diseases).

Hereditary autoimmune pancreatitis.

My grandfather thought he had contracted the problem from eating contaminated beef during World War II. There are two others with the same symptoms in the extended family.

Autoimmune pancreaticitis attacks can be ended with prednisone.
That's important because the pancreatitis progressively damages the pancreas.
Same symptoms as pancreatic cancer, but it doesn't kill you early. The only unaided way to stop the pancreatitis is to exhaust your white blood cells . Which you do by not eating or drinking (except some water) for 72+ hours)

I can't get to Mayo because I can't drive up there. Not until I get cataract surgery. I'm 72.

I have a problem with both fats and proteins. Proteins cause the most pain. When I ran out of Zenpep last month, I used health food enzymes and went on a vegetarian diet. I was surprised that I could eat the higher-fat, low-protein diet. In my lifetime I've become progressively intolerent or allergic to seafood, dairy, wheat, hard boiled eggs, and unaccompanied eggs, And just recently I've been having troubles with all meats. Something seems to go right through the kidneys. Ot it could be an "allergy" that's showing up as kidney passthrough/bladder irritation. Very smelly.

Anyway, I opened up one of the Zenpep capsules to split the dose and saw how little was in there, and got online.

REPLY
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