It’s been interesting talking to people w/exocrine pancreatic insufficiency (EPI/PEI/PI) about what it takes to get updated pancreatic #enzyme replacement therapy (#PERT) prescriptions.

Surprising amount of variance among #healthcare providers, even with #guidelines.

Here’s a guide I wrote for other people with EPI - what would you add to it?

https://bit.ly/3oy7BeI

#gastro #Gastrodon #Gastroenterology #Gastroenterologist

Know people with Exocrine Pancreatic Insufficiency, #gastrodon?

Introducing PERT Pilot:

✨ The first iOS app for people with exocrine pancreatic insufficiency (EPI/PEI/PI)
✨ The only iOS app for specifically recording pancreatic enzyme replacement therapy (PERT) dosing

Available for free download in the iOS App Store today! https://bit.ly/PERT-Pilot-iOS

#gastro #gastroenterology #enzyme #PERT #EPI #PEI

Some observations from 45 days of using zenpep to treat exocrine pancreatic insufficiency #EPI #PERT

1. Much less intestinal gas, bloating, and cramping
2. Better bowel movement regularity
3. More energy to do things, but still limited and often need lots of sleep if I push too hard. 10 hrs of sleep tends to be daily goal
4. Body responding better to exercise stimuli
5. Boobs have grown in size
6. Hair is actively growing longer and more strands

I've now spent 365 days 🎊 on pancreatic enzyme replacement therapy (#PERT) for exocrine pancreatic insufficiency (#EPI or #PEI).

The total number of #enzyme pills per day has changed over the course of the year - as has my food intake! Not all because of EPI, however - some of that is from #ultrarunning.

It's also been interesting to look at the improvement in "streaks" of days without symptoms. #Gastrodon folks might be interested in this!

Blog: https://bit.ly/3GHcsQH

So this is day#28 that I have been using #PERT via zenpep with my food to treat the problem of #EPI, exocrine pancreatic insufficiency that got diagnosed.

It's made a big difference. My digestive system is behaving far better, I poop nearly every day and it seems almost miraculous that I don't deal with so much bloating, gas, and cramping as I had been living with.

The more serious problem of malnourishment is resolving. I'm getting more of the calories I eat and

truly one of the most inexplicable things I've observed since starting #PERT for #EPI is the way that myofascial release via a foamroller feels so very different. It certainly still causes some discomfort while working to break up and realign knotted muscle fibers, but it's more tolerable and I don't have to suppress urges to scream or just stop.

This is day 23 that I have used zenpep with the food I eat. My digestive system is behaving so much better.

Feeling pretty good since waking up earlier. Definitely tend to feel better each day pretty much. #PERT, pancreatic enzyme replacement therapy, is doing me a lot of good and helping to alleviate the problems I've been having because of exocrine pancreatic insufficiency, #epi

I really feel barring something terrible and unfortunate, I will run again and it will feel so good. The echocardiogram showed a healthy heart for anyone my age, but especially so for someone type 1 diabetic 37+ years.

Something I'm wondering about is how #running might feel quite different as #PERT treats the deficiencies I had because of #epi

Like since I've started experiencing this new sensation of light and springy legs, I find myself dreaming of how I might be able to bound up hills, using my legs and their muscles like springs, versus the way it often felt in the past. Kind of hard and trudging, trying to keep the feet light, but still weighty with gravity.

Today is the 14th day that I'm using zenpep as #PERT to treat #EPI.

My own case has some peculiarities and my experiences may not be applicable or parallel to others. But it's made a huge difference for me already and it's almost like my on/off switch has finally flipped all the way to on and it's not in that in between spot where only some current gets through and the light is dim and flickering

3 weeks ago, walking was a lot of effort and my legs had no spring in them

today is day13 of using zenpep as #PERT for #EPI

it's making a huge difference for me and I'm feeling so much better now that food is being digested more fully and I'm getting better benefit of calories and nutrients

on Tuesday at dr appt, my primary and I agreed it would be good to run standard labs, metabolic panel, lipids, because he and I both expect that we're likely to see changes to them as the better digestion changes some things

almost forgot to take a zenpep with the milk I'm drinking

but yeah, now on day 10 of #PERT for the #EPI problem I have

I'm starting to feel much better, some more energy although fatigue jumps on me, but the muscles are feeling much quicker, much lighter, guess I'm burning more glucose now and the fast twitch fibers are waking up?

I need to write down some point key thoughts and concerns for tomorrow's dr appt

#PERT for #EPI is clearly working but there are some tricky things lurking and we'll want to probably monitor some potential issues that may develop

Plus I need to ask him to up the PERT dosage. At minimum I need 8 20k capsules per day and that was the rx written. So how much was doled out to me? 2 bottles of 100 capsules. Which won't last a month assuming normal calorie intake.

right now for me the wildest thing about using #PERT for #EPI is the fact that I'm pooping every day

It's been so many years since I would wake up every morning and it would be one of the first orders of business every morning

At times now I feel a very deep excitement that unless something bad happened to my heart, I know that I will run again and it will feel good again. Maybe even better than ever.

#EPI and #PERT is helping to make a lot things fall into place. And wow, I'm glad I pushed hard to get the testing and consultations needed to diagnose me, because if not, I was getting closer to a very dangerous point of ill health.

Today is day 8 of using zenpep as #PERT for #EPI

Prior the zenpep, I had 6 days of using otc supplements

My digestion seems to be greatly improved. I've had a bm every day for 8 days now, I fart so much less and the farts I do are much less malodorous.

There's no doubt the boobs are growing.

Feeling more energetic at times. But sometimes tiredness slams into me like a big wave.

Been watching how much I eat and what I eat...

Day 6 of using zenpep for #PERT to treat #EPI

I have had a bm which is now 6 straight days. Is this really going to make my gi system do a bm every day and they are well formed? I'm no longer going to have the pattern of backing up for a few days, then 3 or 4 days of the movements going from rather hard to loose and gooey?

Wild

This is day 5 of zenpep for #PERT to treat #EPI

Continue to have much better gastro system behavior

I did realize last evening there may be some concern that there may be some risk of causing a kind of refeeding syndrome in me

Depending on how bad the malnutritive state had become in me, the improved digestion could cause metabolic effects that depleted stores in my body will not be able to keep pace with

so today I'm going to an appt where they'll do an echocardiogram to see how my heart is doing, it can also be compared to one done in May 2017

hopefully it shows the heart working okay and nothing to indicate that some kinds of exercise might pose a risk to me

today is day 4 of zenpep for #PERT to treat #EPI and it's felt very helpful, so much less farting though yesterday I may have had a couple of meals that I didn't take enough replacement enzymes with and had some feelings of bloat & gas

Think I'm starting to see other good signs that #PERT is making a difference with how #EPI had affected me. I'm finally gonna climb out of the hole. At least I hope so.

One thing I need to remember, even as it seems like #PERT is working and taking effect, it's going to take time for some things to get better. So even if I start getting more energy back, it will be best to avoid doing too much.

Recovery needs rest. But now while I rest, the body has more nutrition to work with to help it recover.