With EPI and Zenpep side effects

[Epiguy]

Have you experienced frequent urination while on Zenpep?

And does having EPI (and also taking Zenpep) produce excessive flatulence?

I’m so gassy especially in the evening and at bedtime.

Curious if others have these symptoms/side effects.

[simpleguy999]

Hello, I'm sorry you're having those side effects. I have EPI and have been taking Creon, which is similar to Zenpep, I understand, and is also manufactured from pigs. I have also experienced frequent urination (sometimes going 3 times an hour) and gas as well as an inability to hold back a bowel movement when I feel the need to go. I want to get off the meds. I want to find if there's a cause for my EPI which I can address. My cortisol levels are high, which indicates I might not be handling stress well, and this may have an effect on my digestive enzymes. I also may have low stomach acid. I'm going to a gastroenterologist to see what he or she can advise. I'm also going to a functional medicine practitioner, paying for the services with my own money since my insurance doesn't cover this, to see if he has some ideas. Best wishes.

[Epiguy in reply to simpleguy999]

Yeah, looks like our symptoms are similar. thanks for the reply.

[simpleguy999 in reply to Epiguy]

You're welcome. I was diagnosed with EPI because my fecal pancreatic elastase test came back with a a reading of 83, and any reading less than 100 is classified as severe pancreatic insufficiency. If this test was what your doctor used, you might request a retest to ensure you have EPI. This test gives false positive readings about 20% of the time. ( I got re-tested but still got the same results.) If you have only moderate pancreatic insufficiency (readings of 100-200), perhaps you can ask your doctor what are the consequences of not taking Zenpep.

[Epiguy in reply to simpleguy999]

Great idea! Although my reading was 72 (☹️), I’d still like a second analysis. I was surprised by how casual my gastro doctor was as he simply said just take the creon pills (later switched to Zenpep) whenever you eat. I said “for life?” And he replied nonchalantly “yes.” My whole life now revolves around those overpriced enzymes.

[Beekepper in reply to simpleguy999]

Hi Simpleguy. Can I ask how long you have had EPI for? I just had a reading of 75.

[Epiguy in reply to Beekepper]

Diagnosed in March, 2024. Probably had symptoms of gastro distress a lot longer. But March 5 is when the Steatorrhea started. Since taking Zenpep feel much better.

[Keeping_It_Real in reply to simpleguy999]

Hi Simpleguy999! Personally, I think you are taking the right path by seeing a functional medicine doctor. I’m seeing one now, but the jury is still out! However, one of the highest things I believe in “you have to be your own advocate!” This means doing your own research, making it a priority, leaving no stone unturned! Not trying to preach! I was on Zenpep for a minute and I had the same symptoms you experienced. So, I decided to bag the Zenpep and replaced it with digestive tea and plant-based digestive enzymes. Also, I just can’t wrap my brain around doing pig! But this also included changing my lifestyle when it came to what I ingest. You see I have been plant based since 2010 and I was shocked when I found out my pancreas wasn’t functioning properly. However, since I started on the digestive tea and plant based digestive enzymes my last pancreatic elastase fecal test scored over 300 and my stool is solid and epic! BUT, I’m still struggling with gaining weight and occasionally I’m experiencing pain on my left side which is an indication my pancreas is inflamed or irritated. And get this, I just found out two weeks ago, I am now pre-diabetic, and I did this diagnose myself! I originally mentioned to my primary care provider the pain I was experiencing in the middle of my back thru out the night and when I get up in the morning. Her response was it sounds like you’re having muscle-skeleton issues and offered to give me muscle relaxer medication, I declined. So, I decided to go thru an independent lab and have a HbA1C blood test, and lo and behold my test result fell in the range of 5.7, which is on the low end of being pre-diabetic. But, thru it all, I’m still hopeful. Tomorrow I’m scheduled to have a MRI-MRCP to determine the status of my kidneys and liver. Sorry for the lengthy thread, and I hope what I’ve shared can be helpful.

In the spirit of unity!