Many pancreatitis patients who also suffer from Exocrine Pancreatic Insufficiency have a hard time calibrating their pancreatic enzyme dose. If you're on pancreatic enzyme replacement therapy (PERT), whether you take Creon, Zenpep, or another brand of pancreatic enzymes, you should make sure your dose is right for you.
In this 5 minute video, Dr. Steven Freedman explains how to dose pancreatic enzymes for adults. Check it out: youtube.com/watch?v=9Cqn3uS...
Thank you, Sofia, great video! There is so much more info today than there was back when I was trying to figure all this out. ♥
Over the years, I pretty much figured out dosing on my own. With conflicting reports from various different doctors, I decided to take all the info I did have, and make my own determinations.
One of my original dr.s told me to make sure I take the enzymes 15 minutes before I eat. So that's what I did for quite some time. Then when I ended up with the specialist who put the stents in my pancreas, he said "What a waste!" He was the first one to tell me they had to be 'mixed' with the food. That was about 25 years ago.
Since then, I've learned how my body reacts, and dose accordingly. And my doctors seem to approve. I now come very close to the dosage you share in this video. Although, I may be taking a bit less.
One thing that struck me here was his comment about weight loss. Since that's what I'm dealing with currently. I may try upping the dose for a couple of weeks and see if that stops the weight loss.
Thanks for sharing this!
Wow-- I'm sorry you had to go through so much uncertainty regarding your enzyme dosage! It seems like a universal experience, unfortunately, but luckily there are experts like Dr. Freedman who can help.
Definitely let me know if your symptoms improve after upping your enzyme dose-- I saw in a previous post you lost around 60lbs? That's so much weight. I hope this can be the answer to your problem. Keep me updated!
Thanks for sharing your story KarenB12. I wish you well on this journey! Cheers
G’day Sofia, thank you for the great work you’re doing with Mission:Cure. I stumbled across the original site a couple of years back searching for support of any kind, after my own chronic pancreatitis diagnosis 6 years ago due to dodgy genes. I too, found it difficult to comprehend the intricacies behind how these enzymes functioned and tried to educate myself about it. Unfortunately there wasn’t much information out there. Therefore I’m grateful for the video you’ve posted here.
I’m currently spreading 3-4 capsules across my meals from start to finish (generally within half an hour) depending on the size and fat content of my meal. So far it seems to be working for me. However the more informed we are the better. This can only improve with time and further studies. It was a real eye opener to hear Dr Freedman’s analysis on dosages during meals, especially with respect to the amount of capsules some people could potentially be taking in the worst case scenario.
One important thing that I did read was that it is important to not excessively handle the capsules or keep them in the mouth for too long. Skin oils and mouth enzymes can disrupt the capsule’s protective layer, which is designed to protect the enzymes within for the entire journey through to digestion.
Finally, I’d just like to touch on the anxiety I’ve faced especially when eating in a busy cafeteria or out with friends having a meal. This sounds like such a superficial problem to have, but once I was out of denial from the initial shock, I found myself secretively popping enzyme capsules while everyone around me was enjoying themselves. It was hard to get used to and I felt like I was the only person in the world with this. It was brutal having my kids watch me during meals. Nevertheless the support of family and friends has been invaluable. As is the support of Mission:Cure. Talking to others really is a healing process. So once again thank you for your initiative and inspirational leadership.
Thank you for sharing, Fair. I'm glad to hear you've found a dosage that works for you.
Remember that your body will go through different changes (normal ones) and you may need to adjust your dosage as time goes on.
I was also shocked at the number of pills mentioned in that video. I asked my GI dr. about it yesterday and he said most of his patients take approx. 3 capsules with meals. (Which is what I am currently taking as well)
The idea of taking 12-15 capsules per meal is crazy, right? 🤫
Maybe not. It's something that I think I'll readdress with my doc once we get my other symptoms under control.
As for your horror at having to take enzymes with meals or out in public, all I can offer there is, it gets better. 
I recently participated in focus groups before where they've asked me how I can remember to take my enzymes. My answer was, at this point in life, I don't 'have' to remember. it comes automatically. You'll suddenly realize one day that it is such an ingrained habit, you don't even notice you're doing it.
Whenever I even think about eating a meal, my muscle memory kicks in, leading me to the pill cabinet.
It's just something that goes away after a while, that feeling of embarrassment at having to take pills with each meal. Especially when you really start paying attention and seeing how many others also take some kind of medication before they eat.
Our society is barraged with GI ailments in one form or another. It doesn't take long to come up on someone else who takes meds for that very reason.
I wish you the best. You've already overcome the most difficult part, finding a dosage that works for you ♥
I have just been prescribed Creon 10000 Capsules I've to take one or two three times per day with meals. I was diagnosed with Coeliac in 2003 I was very ill and lost a huge amount of weight. But over the years on a strict gluten free, lactose free and yeast free diet I am still having diarrhoea some of the time and can't leave the house without taking Loperomide. It seems I have Pancreatic exocrine insufficiency. Perhaps this has been the problem for all those years. Has anyone else had this problem? Many thanks.
yes Pancreatic Exocrine insufficiency can cause diarrhea. I still get it aT times and dr sent me for a fecal fat stool test to see if I had a lot of fat still in my stool. Ask your dr for a stool test called fecal fat stool test to see if your enzymes are where they need to be or ask Dr if you need to increase dosage of enzymes. I hope this helps!
Thank you Sofia. Yes that's a big help. Have a good weekend when it comes. 🙂
Thank you Sofia. This was very helpful!
How do you deal with the stress and fear of having chronic pancreatitis?
What was your experience with your pancreatitis diagnosis? 
Constipation 
📣 Discussion Topic: What pancreatitis issue is most important to you and why?
