Does PERT even work?

[Ozette]

Is there anyone who takes replacement enzymes successfully and what that might look like or feel like? I started Creon 3600 last December and still have much of the same symptoms as before. It's very discouraging as it can be quite restrictive. I can't plan anything for early in the day, I feel hungry nearly all the time and never sure about what or what quantity to eat and I'm often very tired.

[Epiguy]

Well I’ve been taking Creon 36,000 since June of this year (2024). I eat smaller meals and generally take 2 with breakfast and 2 with dinner. I don’t always eat lunch and depending on size I will take 1 or 2 if I do eat lunch. As far as snacks go it will depend on size and type of food. Generally I take 6 or 7 pills each day. Now it took a few weeks but I generally feel better. My bowels are fine but I still get occasional bloating . I always feel better when exercising and/or light jogging. A big problem with Creon is it’s price. When my pills run out I plan to switch to Zenpep (whatever the hell that is…). Anyway, the Creon will work eventually. Limit the size of your meals and eat frequently and healthy and take more if needed. Good luck!

[tomdickharry in reply to Epiguy]

Creon should be on prescription if you have pancreatic insufficiency.

Zenpep is just a different formulation of pancreatin.

I was on Creon for 20+ years intil I had a serious allergic reaction.

Now take pricey herbal enzymes but no prescription.

[Readingagatha]

It will take time. I feel hungry a lot too but eat almost anything. My consultant told me my bowels would let me know if I eat something my pancreas doesn't like & they certainly do xx

[Readingagatha]

It will take time. I feel hungry a lot too but eat almost anything. My consultant told me my bowels would let me know if I eat something my pancreas doesn't like & they certainly do xx

[quanglewangle]

Hello. 30 years ago I nearly passed on but an elimination diet establiseh Coeliac disease as the culprit and I have gradually regained the 70lbs I had lost. BUT diarrhea with multiple unscheduled toilet visits a day have remained with me ever since and colonospies etc had failed to nail down the problem until a visiting GP suggested pancreatic insufficiency could be the problem and my PERT journey began. Low dosage cut toilet trips from up to 15 per day to five. Spurred on I decided to investigate and came across this video from Dr Steven Freedman of Harvard Medical School that made a lot of sense

youtu.be/9Cqn3uSxCRs(Not working as expected?) how to dose pert

almost immediately Nutrizyme 22 became unavailable and so too did Creon 25000 but following a visit to our Hospital Enterologist I got some Pancrex V and started sprinkling.

At the same time I was inspired to try probiotics and started high dose (60 billion) Maximedix capsules three times a day - now reduced to two - and toilet trips are down to 2-3 per day.

I am still reluctant to leave the house before noon but have had no pants pooing episodes for ages and Great news 😃got a supply of Creon yesterday and can now follow Freedmans advice on dosage.

This came out recently and provides a wealth of stuff too

psgbi.org/media/resources/P...

Good luck

[JOSANDY40]

After my Pancreatitis and white poo I was put on Creon but the pain and bowel emptying justed stayed bad, staying ill so stopped Creon. I ate mouthfuls through the day of cooked rice or fruit and meat in soup. It took 2yrs before I could a small meal. I cut out Lactose, Gluten, Mushrooms and Banana due to immune system response with a problem digesting some proteins with breathing issues. I and only eat soluble fibre due to. I have Endometriosis in my whole trunk which effected several organs, the use of steriod treatment for Endometriosis started this problem with the Pancreatitis which altered my heart enzyme production. Since tge Pancreatitis I now need a low dose of blood pressure tablets. I can't take steriods again. I lost alot of body weight but 8yrs on eat small meals 6 times a day. I still have digestive issues, chest pain if I've eaten too much or the wrong thing, take propump Inhibitors, rigid bowel with pockets, Ulcerative Colitis and Diverticulitis. As to food enzymes I haven't found I can use them regularly but occasionally if I doubt myself while eating out I will take a small amount. Unfortunately I can get Pancreatitis which needs hostipal care. Its a fine balance. I remain nervous of food.