Hi, I'm new to the forum, hoping I can navigate it... Slightly technically challenged! Type 1 long time, now just diagnosed with EPI. Been trying to research to understand this new condition. Anyone else have it in conjunction with diabetes? What I can't find out is what to expect / ask for from NHS.... was given trial of Creon, been chasing follow up but nothing. Should I be pushing for other bloods to check vitamin deficiencies / bone scan.... Or is this unrealistic... If I ever receive a follow-up appt that is! Also, any alternative to Creon, is it only choice in NHS? Are all ERT's pork derived? And can this EPI thing run in families? Hope Post allowed, read it's more common in diabetics.
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EPI - Any advice anyone?
- Thread starter MY.maria
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nonethewiser
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- Relationship to Diabetes
- Type 1
Creon user here. As far as I know only creon available is one that comes from pigs pancreas.
Had full bloods checked on diagnosis, also sent for Dexa Scan to check bones health, found to be at osteopenia stage so was started on calcium tabs 2x daily & alendronic acid 1x weekly.
Told EPI was due to type 1 so be surprised if it ran in families unless others have had diabetes, takes wee while to get creon dose right but it does what it says on box, making up for loss of digestive enzymes.
Had full bloods checked on diagnosis, also sent for Dexa Scan to check bones health, found to be at osteopenia stage so was started on calcium tabs 2x daily & alendronic acid 1x weekly.
Told EPI was due to type 1 so be surprised if it ran in families unless others have had diabetes, takes wee while to get creon dose right but it does what it says on box, making up for loss of digestive enzymes.
trophywench
Well-Known Member
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- Type 1
I don't think there is an alternative to pork derived creon.
50 years ago the only insulins available were either porcine or bovine. We managed to stay alive using them and as far as we were concerned we were much more interested in that fact than not exploiting animals which were being slaughtered for meat anyway so still being killed for that purpose and of course you can't extract the pancreas of anything to extract the hormones from them, without killing them.
So I should think if you want to stay alive, you're stuck with it, same as some of us here were!
50 years ago the only insulins available were either porcine or bovine. We managed to stay alive using them and as far as we were concerned we were much more interested in that fact than not exploiting animals which were being slaughtered for meat anyway so still being killed for that purpose and of course you can't extract the pancreas of anything to extract the hormones from them, without killing them.
So I should think if you want to stay alive, you're stuck with it, same as some of us here were!
Pumper_Sue
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- Type 1
Another Creon user here 🙂 It's the only type available on the NHS. So it's your choice as to whether you take it or not. If you don't you will end up very ill if not dead from malnutrition.
Follow up? what's that? 🙂
Follow up? what's that? 🙂
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
I too take Creon for autoimmune Chronic Pancreatitis. It is taken by every type of person, whether Jewish, Muslim, vegetarian or vegan because there is no alternative to porcine Creon. Pigs are omnivores, like us, and the digestive enzymes are very similar to our own. No plant on earth produces anything that could replace animal derived Creon. As @Pumper_Sue says, if you don’t take it you will likely rapidly develop malnutrition, and you will also get through more Andrex, and spend half your life trying to flush your fatty bowel motions away.
Creon is the only product on the NHS, but similar products use the same technology. Any product you see on the internet that is vegetarian is nowhere near the effect of Creon, or useless. Avoid at all cost.
In any event, every religion in the world gives you an abstention to take it, including the Catholic Church which forbids taking animal products on Good Friday.
Creon is the only product on the NHS, but similar products use the same technology. Any product you see on the internet that is vegetarian is nowhere near the effect of Creon, or useless. Avoid at all cost.
In any event, every religion in the world gives you an abstention to take it, including the Catholic Church which forbids taking animal products on Good Friday.
Wow! I came to the right place for straight answers, hurrah and thank you! I very much want to stay alive so if gastro man ever gives me further appt I will take however much Creon he pushes on me with a smile. Good to know that at least one of you had bloods to check for deficiencies and bone scan. Guess we are at the mercy of postcode but will push for this. Elastase test suggested mild EPI but symptoms for a year, bad enough can only imagine how much worse it would be with lower numbers ♀️ I've been trying to get accurate information for a while but was difficult to find detail.... Should of come here first! Anyone know percentage of population living with this beast?
That sign was meant to be something different.... Guessing they don't translate on this platform!
nonethewiser
Well-Known Member
- Relationship to Diabetes
- Type 1
Own Elastase test was mild. Find with Creon dosage depends on type of meal, don't know about others but higher fat & protein based meals means taking more Creon than normal, typical English fry up is one example.
No idea about percentage of population, never looked it up as it doesn't really matter anyway.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
I've had T1 50 years. I have been active on diabetes forums for 20 years. I know what T3(c) diabetes is and what causes it.
I had to look up EPI ! GP surgery nurses usually don't have too much of a clue about T1 diabetes, and GPs don't either. No way Pedro would I expect either of the nurses at ours to have heard of it.
I don't think it's at all common - any number of folk on this forum might be likely to have it at some time I suppose, bearing in mind a lot of em already have a pancreas that's already failed or failing in the Beta cells dept, so why not have another bit of it that malfunctions? Or, doesn't that happen? Not having studied medicine, I dunno!
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
It’s worth advising you on Creon dosage. You cannot overdose with Creon. The worst thing that happens is you get a sore bum, like after a Vindaloo. The correct dose is the dose that gives you regular bowel motions, and everyone is different. Currently I can take 100,000 units (4 25000 capsules) with some meals, or just 10,000 with snacks like a few nuts.
You will find that GPs have no concept of Creon dosage, so you find prescriptions saying “two to be taken with food”. If I did that, I would live in the toilet.
And the best time to take it is during a meal, not before or after. That more or less equates to what your body would do if normal.
It takes months to settle into a routine with dosage unless you eat the same thing every day. You will kick off with the 10,000 unit capsules, but if you find that doesn’t suppress symptoms unless you take 4-6 capsules with food, do what I do in getting a supply of 10,000 unit and the 25,000 capsules on my routine prescription. And your dosage will change over time, that’s normal. And don’t eat Avocado, it’s murderously high in fat.
You will find that GPs have no concept of Creon dosage, so you find prescriptions saying “two to be taken with food”. If I did that, I would live in the toilet.
And the best time to take it is during a meal, not before or after. That more or less equates to what your body would do if normal.
It takes months to settle into a routine with dosage unless you eat the same thing every day. You will kick off with the 10,000 unit capsules, but if you find that doesn’t suppress symptoms unless you take 4-6 capsules with food, do what I do in getting a supply of 10,000 unit and the 25,000 capsules on my routine prescription. And your dosage will change over time, that’s normal. And don’t eat Avocado, it’s murderously high in fat.
nonethewiser
Well-Known Member
- Relationship to Diabetes
- Type 1
Wouldn't expect she would if honest.
Mike above has offered up some good advice about taking Creon, just one thing I've noticed is order it in advance, other words don't get down to half a tub then order prescription, I find it can take week before Creon is delivered where as other prescription items are here in 2-3 days, might be local issue but just heads up on it just in case.
trophywench
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- Relationship to Diabetes
- Type 1
Haven't asked for it, dunno what date it was except roughly - just before the Munich Olympics! (the Black September murders one)
Pumper_Sue
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- Relationship to Diabetes
- Type 1
You haven't missed much 🙂 I shan't bother with the 60 year medal if I am still alive 🙂
Wow! 50 years, amazing! I'm 20 yrs behind you. Hope you've received yr medal and wear it out every day!
Thanku for advice, much appreciated. Currently no Creon, GI man remains elusive despite my efforts to contact him.
Thanku for good advice. When I eventually get a prescription... I will be sure to do so!
But shame.... Do love avocado!
Proud to be erratic
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- Type 3c
- Pronouns
- He/Him
I love avocado and am a Creonista. Doesn't give me any problems. Avocado is also very low in carbs, so when I occasionally am eating a one-off low carb high protein meal and not taking a bolus, avocado is high on my list of choices.
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