Is anyone taking Zenpep rather than Creon? If so what foods work?

Posted by judithbramson12 @judithbramson12, Jun 13, 2023

I do not have diarrhea, but I have many bowel movements as my digestive system doesn't seem to get the nutrients needed. I go uup and down about 4 pounds every day, but am stuck not moving ahead. I don't have diabetes, but do not eat sugar, salt or sodium. I eat about 1,500 to 1,600+ calories a day, but they all go down the toilet. I'm working with Mayo on this, but so far nothing seems to work. I take 40,000 unitswith my three meals and 10,000 units with each snack. I need to gain 13 pounds and don't know how to regulate the water intake as well. Anyone who has any information would be greatly appreciated! I'm 6 months from surgery and they got it all. I have no cancer. Thank you for reading this!

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stageivsurvivor | @stageivsurvivor | Jun 16, 2023

In reply to @judithbramson12 "Wow, a lot of information to digest. I have to reread it again carefully and want..." + (show)

The breath test is used as part of a gastrointestinal work-up to determine if you have a co-morbidity causing failure to gain weight. The breath test is used to look for other causes such as lactose intolerance, small intestine bacterial overload (SIBO), Irritable Bowel Syndrome (IBS). It measures the hydrogen gas you exhale. There are variations of the test that measure the digestion of different sugars. The information is used to determine the causative pathology and the appropriate treatment.

judithbramson12 | @judithbramson12 | Jun 16, 2023

Your response was very informative. I appreciate it a lot. Thank you for taking the time to explain. Hopefully this will yield some information that can be helpful.

gardenlady1116 | @gardenlady1116 | Jun 16, 2023

In reply to @stageivsurvivor "All the Rx pancrealipase products are the same as far as the basic ingredients go of..." + (show)

@stageivsurvivor

All the Rx pancrealipase products are the same as far as the basic ingredients go of amylase, lipase and protease. But because of differences in manufacturing processes of how the enzymes are extracted from porcine pancreas, concentrated, purified, and enteric coatings used, each one will perform differently within the same patient. One’s body chemistry differs as well, so this is why it is worth trying different brands to see which one performs best. In the product insert for Creon under the heading “Dosage and Administration” it is stated: “CREON is not interchangeable with any other pancrealipase product (2.1)

The (2.1) refers to the specific section of the product insert regarding administration. It discusses that it requires being optimized by the patient for the specific meal based on food quantity and particularly fat content. There are two ways to do this: keeping a daily food journal noting date/time, meal type, quantities of each food item and particularly fat content. After consumption, noting any GI symptoms related to EPI. If noting noted, the number of capsules was sufficient. If there is excessive gas, changes in stool, steatorrhea, light yellow or light orange color to stool that appears oily and floats with a greasy sheen on the toilet water, it indicated undigested fat. Either eliminate the excess fat from the diet or increase the number of capsules. What is initially prescribed in amount to take is just a “ball-park” figure. One needs to optimize.

An easier way to optimize is going to the site https://digestthis.ca. It is an on-line dosing calculator developed by the Canadian Digestive Health Association in collaboration with Craig’s Cause Pancreatic Cancer Society of Canada. It eliminates most of the trial and error. It works with all the Rx brands of pancrealipase (Creon, Zenpep, Viokace, Pertzye and Pancreaze.

A little more about the misconception that enzyme brands are all identical. During the years I worked in the clinical research lab, I was exposed to enzymology. I had to produce an enzyme from an animal source for an experiment I repeatedly did as part of a long-term clinical investigation. It was a tedious process requiring extraction, purification by dialysis and concentration using a lyophilization process. In looking to find a more efficient method, I was made aware of other processes and gave those a try. I then had to compare the new preparation method with the one currently used. So in addition to quality control steps and making sure the enzyme activity was relatively the same, the other production methods did not work as well. While they were easier for producing the needed enzyme, the enzyme activity was not as efficient as the original.

So when someone says enzymes are enzymes and no need to switch….think twice. It doesn’t hurt to try and physicians and registered dietitians have access to physician samples they can provide to do an evaluation before the prescription is changed to see if an alternate brand performs better.

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Your knowledge is impressive! Thanks for sharing it with the community. Best of luck to you with your treatment

anxious1 | @anxious1 | Jun 16, 2023

You didn’t mention how tall you are. The average person needs about 2000 calories a day to maintain weight, any less and you will lose weight, so you might want to increase your calories to at least 2500 to 3000 to gain weight. I use the My Fitness Pal app for my phone to keep track of mine. My doctor told me about it. The app is free but I did pay the $80 for a year for the micro nutrients, so I can track my protein and fiber daily along with the calories, fat, etc. It is a very simple app to use and I have not found anything not listed. I have not found a restaurant I have been to not listed. You just type in the food, adjust the serving amount and it tracks all of it for you. Easy to know any time of day if you need more and of what. I find that if I haven’t had enough protein, it’s time for Naked Vegan Protein shake. Comes as a powder, stir into water or your choice of milk. Very important to keep your protein up. I find it so helpful to make sure I am getting enough of the right nutrients, including potassium. Good luck

judithbramson12 | @judithbramson12 | Jun 16, 2023

I am between 4’10’ and 4’11”. I used to be all of 5’. But I’m 84 years old and had a terrific body until pancreatic cancer hit. My usual weight should he between 93 and 95 pounds. It was mostly muscle as I am a ballroom dancer. I’m trying to keep the proteins up. My doctor said the enzymes are the important factor. Next month I will have the hydrogen breath test to determine if I’m lactose intolerant, etc. Hopefully, that will be informative. I hate milk and shakes of any kind, so I’m doing this on foods minus fat, sugar and sodium at low levels.

Thank you for all the information. I will look for the app. I don’t cheat on the food, but I’m careful not to overload as that could be trouble. I did gain close to two pound during this past week. My bowels tell thee story for me so I’m doubly careful with my food. Mostly I repeat over and over what seems to work. I don’t consider taste as much as I consider fuel for my body.

stephenkogler | @stephenkogler | Jun 17, 2023

After Whipple surgery, eating has become such a chore. I am 57 years old, 5‘10“ and 155 pounds. I take 75,000 Creon units with each 500 calorie snack/meal. The only way I don’t lose weight is if I eat between 2500 - 3000 calories per day. I also have MS so I avoid wheat, dairy, and egg products. Each of our situations is so different. I wish I had better information for you to share. You’re fighting amazing fight.

judithbramson12 | @judithbramson12 | Jun 17, 2023

Thank you for sharing. It’s an uphill battle. Just when I think I’ve finally making headway, something goes wrong. Usually it’s food that I’ve eaten too much or too fast. At least I’m not going down! I know it could be a lot worse. Old age ain’t for sissies! Either is recovering from Whipple!

kjc12 | @kjc12 | Aug 31, 2023

In reply to @judithbramson12 "Thank you. I take the same dosage and can’t understand why I am not gaining. Mayo..." + (show)

Just wondering how you are making out these days. My husband is still struggling to gain any weight and dealing with excessive gas and diarrhea at least once a day. He has increased his Zenpep to 5 with meals and 2 with snacks today, to see if this helps at all. If you have any updates on how you are managing your symptoms I would greatly appreciate your input. Hope things are moving in a positive direction for you.

nvan22 | @nvan22 | Sep 1, 2023

I am in the exact same boat. I eat like crazy thousands of calories but it doesn’t stick. I am now taking probiotics and I think it’s helping a little. I am 102 during the day 98 after morning bowel activity. This doesn’t seem to change. Ugh.
I am almost a year after whipple. I need to take my Imodium AD early in the morning maybe that will stop it?

judithbramson12 | @judithbramson12 | Sep 1, 2023

I am not making headway. Although I am not gaining, I’m not losing. Now I have a new companion. I started dumping. Crazy as it sounds, I feel better. I’m going to post re: dumping to see what others have done. I followed Mayo’s handout diet, but it didn’t work. I didn’t know one could increase dosages without doctor’s recommendation. I’m interested if the increase works. Good luck! This is a rotten journey, but the alternative is worse.

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