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marcimoo

New Member
Relationship to Diabetes
Type 1
Hi guys,
I’m Marcia, never used a forum so go gently came across it after searching for PEI info, I’ve been Type 1 for 23 years, recently diagnosed with PEI after having symptoms for 18 months or so and feeling in every sense! After the reading I e done on here I think this is going to be more beneficial than a telephone consultation with the Diabetes team
 

Inka

Well-Known Member
Relationship to Diabetes
Type 1
Welcome @marcimoo :) Just to check, are you talking about pancreatic insufficiency? If so, are you on Creon? A number of people here are.

No problem about never having used a forum - we’re all friendly here, so if you need any help at all, just ask :)
 

marcimoo

New Member
Relationship to Diabetes
Type 1
Thank you @Inka
Yes pancreatic insufficiency, I never knew such a think existed until a few months ago, yes I’m taking creon, I recently had a chat with a dietitian who explained about adjusting the amount of tablets for what you are eating so I feel like things are improving but I’m still not great! I’m mostly struggling with stomach cramps, emergency toilet trips snd lack of sleep
It’s so nice to find others in the same situation
 

Inka

Well-Known Member
Relationship to Diabetes
Type 1
That sounds really unpleasant @marcimoo There are Type 3c people here who use Creon but also some Type 1s. I think @mikeyB does and @nonethewiser and @Pumper_Sue amongst others. If you put “Creon” into the Search box (click the button top right just below the orange Donate) you should find some threads mentioning it so you can have a read through while you’re waiting for more replies here (weekends are often quieter on the forum).
 

Pumper_Sue

Well-Known Member
Relationship to Diabetes
Type 1
Thank you @Inka
Yes pancreatic insufficiency, I never knew such a think existed until a few months ago, yes I’m taking creon, I recently had a chat with a dietitian who explained about adjusting the amount of tablets for what you are eating so I feel like things are improving but I’m still not great! I’m mostly struggling with stomach cramps, emergency toilet trips snd lack of sleep
It’s so nice to find others in the same situation
Hello and welcome to the forum.
With your symptoms it sounds as if not enough Creon is being taken.
I have a cyst on my pancreas which is causing me to not digest food so like you emergency toilet trips etc. Now I've worked out my Creon doses things have improved a lot I'm pleased to say.
Do you take Creon when you have a low blood sugar? as I found even hypo treatment even if jelly babies need Creon.

Have you also been checked for Coeliac disease?
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Welcome to the forum @marcimoo

Hope you find a way of balancing your diabetes, PEI and creon intake to reduce the cramps and settle your tum down.

Sleep deprivation can be very difficult to life with :(

Keep asking away with any questions you have. There are no ‘silly’ questions here :)
 

marcimoo

New Member
Relationship to Diabetes
Type 1
That sounds really unpleasant @marcimoo There are Type 3c people here who use Creon but also some Type 1s. I think @mikeyB does and @nonethewiser and @Pumper_Sue amongst others. If you put “Creon” into the Search box (click the button top right just below the orange Donate) you should find some threads mentioning it so you can have a read through while you’re waiting for more replies here (weekends are often quieter on the forum).
Thanks for the tip! I’m definitely going to be picking some brains! Everyone on here is so helps, you are living encyclopaedias ‍
So glad I joined, I’m very grateful for your help and knowledge x
 

nonethewiser

Well-Known Member
Relationship to Diabetes
Type 1
Another creon user & also have pancreatic insufficiency, diagnosed about 3 years back.

Big improvement since starting Creon, average dose for 3 main meals is 5x25000u capsules, started off on 3x25000. Not long after diagnosis consultant sent me for Dexa scan to check bone density, lucky he did as result was osteopenia, so started on once weekly drug & calcium tabs 2x daily. Only thing can think of what caused it is not absorbing calcium properly for some time, possibly long before diagnosis, who knows.

When seeing consultant ask about having dexa scan to make sure all is in order, any questions fire away, learnt lot from members like eggyg & mikeyb on here.
 

eggyg

Well-Known Member
Relationship to Diabetes
Type 3c
Hi @marcimoo and welcome. Type 3c here on Creon, I don’t process a pancreas. I’ve taken Creon for 14 years, started on it before my op to remove the offending article. It was almost instant relief. I still have days when I’m never off the loo ( yesterday 7 times, TMI?) and can’t figure it out. It’s very much trial and error. Just remember it’s an enzyme and not a drug, you take what you need. Obviously fatty food is the baddie in this relationship, but a top tip I learnt from @mikeyB just a couple of years ago and I can only say it changed my life, have a couple of mouthfuls of food first to get your juices flowing then take the Creon. It’s no good taking before the meal or after it, it won’t work. If I’m in a restaurant and having three courses, I’ll split them up and take with each course. Of course some days you’ll be bunged up, just cut down or change your diet that day. I’m still learning after all this time. Top tip, suss out where the loos are, carry “ supplies” incase of accidents, and talk about it. I never for years, even to my family. But thanks to this forum I’m quite open about my bowel problems. We all do it, maybe some of us more than others! Good luck. Elaine.
 

nonethewiser

Well-Known Member
Relationship to Diabetes
Type 1
Hi @marcimoo and welcome. Type 3c here on Creon, I don’t process a pancreas. I’ve taken Creon for 14 years, started on it before my op to remove the offending article. It was almost instant relief. I still have days when I’m never off the loo ( yesterday 7 times, TMI?) and can’t figure it out. It’s very much trial and error. Just remember it’s an enzyme and not a drug, you take what you need. Obviously fatty food is the baddie in this relationship, but a top tip I learnt from @mikeyB just a couple of years ago and I can only say it changed my life, have a couple of mouthfuls of food first to get your juices flowing then take the Creon. It’s no good taking before the meal or after it, it won’t work. If I’m in a restaurant and having three courses, I’ll split them up and take with each course. Of course some days you’ll be bunged up, just cut down or change your diet that day. I’m still learning after all this time. Top tip, suss out where the loos are, carry “ supplies” incase of accidents, and talk about it. I never for years, even to my family. But thanks to this forum I’m quite open about my bowel problems. We all do it, maybe some of us more than others! Good luck. Elaine.

Find with fatty food more Creon is needed eggyg, example mixed grill & bbq, do you find same.
 

marcimoo

New Member
Relationship to Diabetes
Type 1
Thanks @eggyg! I never thought of olive oil and I use that all the time, I love Mediterranean cuisine so it’s usually swimming in it!
 
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