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?

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@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

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

REPLY
@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

Jump to this post

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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@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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@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

Excellent post….. makes a lot of sense. VERY HELPFUL!
Many thanks!!

REPLY
@christinekaranges

I was told to take two Creon capsules at Breakfast Lunch and Dinner and one morning and afternoon tea but if I only have a drink I don’t take it It says on the bottle 35,000 and 100 capsules All new to me

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What you were told is an unscientific method and nothing more than a best guess. How to correctly dose pancrealipase has been an issue for a long time. The amount varies based on carbohydrates, fats and protein there is in a meal. Having dinner one night of a heaping mound of starch in a heavy Alfredo cream sauce, butter slathered on Italian bread and Tiramisu for dessert is going to take more Creon than a salad garnished with chicken. A bowl of Rice Krispies with banana and skim milk and toast is not going to take much-especially since the salivary glands in you upper neck region produce amylase and might be enough to handle a low fat meal.

I don’t need any Creon for my low-fat breakfast meals and don’t take in unnecessarily with what it costs for a bottle. This is why using the dosing calculator makes a lot more sense then someone generically saying to take X amount with meals and Y amount with snacks. And if one is eating fruits as a snack, fruits contain enzymes within them that get activated when it reaches your intestine. Enzymes are not required for fruits. That banana sitting on your counter in warm weather turning to mush is because of the enzymes within it breaking the fruit down into sugar.

Then there is the definition of “snack”. When a snack is more like a light meal of a sandwich and/or bowl of soup with meat and fat in it, then I’ll take one Creon. Otherwise I do fine with no Creon on what I consider a snack to be is something to hold me to meal time like a un-buttered roll or handful of crackers.

Some Registered Dietitians have a good understanding of how the pancreas works and how to correctly prescribe pancrealipase. Oncologists seem to have the least amount of experience in the correct use of pancrealipase and it’s understandable-they study hematology and oncology and treating solid tumors. It is the Registered Dietitians getting specific training. The ones with the designation C.S.O. Have the specific training in using pancrealipase and I still encounter many aR.D.’s not aware of the dosing calculator the Canadian Digestive Foundation created to simplify dosing to a more accurate way of doing it.

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@stageivsurvivor

There is an on-line dosing calculator that makes it easier to determine the required amount of pancrealipase based on meal ingredients and the quantities. It does not yet list ZenPep so using the closest dosage to the Creon dosages in the menu will be equivalent.
http://digestthis.ca
Once I figured out the number of capsules for each meal, weight gain was much easier. Now I have to actually watch my weight in not gaining any more to maintain my BMI.

Jump to this post

I was told to take two Creon capsules at Breakfast Lunch and Dinner and one morning and afternoon tea but if I only have a drink I don’t take it It says on the bottle 35,000 and 100 capsules All new to me

REPLY
@judithbramson12

I made a discovery yesterday re: fat. I saw the fat content of peanut butter is 18, at least my brand. So I took a chance and increased my Zenpep from 40,000 to 60,000. I had the first “real” BM since my journey began. Right color, right size and, if you’ll excuse the expression, clean toilet paper. I don’t know if it will hold, but it’s my first good news. I am going to adjust my dosages to fat content. I’ll post again in a week to see if it truly made a lasting difference. I don’t ask permission, I just experiment. Sugar I gave up from the start; I didn’t realize how important fat is to my new system.

Jump to this post

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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Thank you. I appreciate the information.

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@judithbramson12

Your post is helpful. I am going to try 3 Zenpep at all meals. I have to gain 10 lbs. Did you have to gain weigh? And I thought Nutella had sugar. I don’t have diabetes, so I stay away from sugar. Just can’t get consistent. BM. Three days they are good, then I’ll eat something I always ate and the diarrhea returns. Maybe it’s because the enzymes aren’t strong enough.

Thanks for your response. It gives me something to try.

Jump to this post

There is an on-line dosing calculator that makes it easier to determine the required amount of pancrealipase based on meal ingredients and the quantities. It does not yet list ZenPep so using the closest dosage to the Creon dosages in the menu will be equivalent.
http://digestthis.ca
Once I figured out the number of capsules for each meal, weight gain was much easier. Now I have to actually watch my weight in not gaining any more to maintain my BMI.

REPLY
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