Diagnosed with EPI

[Moveitorlose]

Hi I'm Debbie from Birmingham England But have moved to torquay in the last year

I've had 2 stage 4 cancers cervical 16 years ago and then 4 years ago it came back in my spleen

I've been told though surgery i have developed EPI

And being proscribed creon 25.000

It just says take 2 with meals and 1 with snacks

I can't see a upper gi yet as there is a waiting list

So just so stressed not knowing what diet I should be doing and how much food I should eat

[Macdoris]

Hi, sorry to hear about your troubles. After losing 5 stones in 3 years (during Covid) I was diagnosed with EPI aged 62 and started taking Creon 25,000 in November 2023. Like you, I wasn't given much information at the time and was in shock at the diagnosis, tbh, as there's no history of surgery or previous illnesses apart from Fibromyalgia and various forms of arthritis in my joints. I was on high doses of Prednisolone in the 2000's and wonder if that triggered it all these years later.

To get back to your point, I struggle with the dosage even now and find it difficult to judge how many tablets to take with each meal, and I haven't put any weight on in over a year of taking them (but haven't lost any more, thankfully). My dietician is accessible by phone which is great, but if people don't have this condition I think they struggle to understand the effects too.

A quick rule of thumb I use is to take one tablet with, say, a crumpet or muffin and up to 4 with a main meal but it all depends what that consists of. A meat stew with potatoes and veg, or a bowl of soup with bread and butter require different doses. I look at each serving and break it down into protein, starch and sugar, and have an extra tablet for protein if it's the biggest part of the meal. It's not very scientific and isn't always right but seems to be OK for me.

I also suffer with a lack of appetite and have Aymes shake replacements which are mixed with milk and do stimulate my appetite, and are nutritionally balanced. I have 2 tablets with a 200ml serving because of the milk. These are available on prescription but only through your dietician (although my GP surgery were reluctant at first!).

I have been suffering from poor skin, hair, nails etc but I'm now taking a reputable multi vitamin/mineral daily and things are improving slowly. You get fixated on your food and medication and forget about vitamins I find.

I still don't know when the optimum time is to take Creon, after the first bite or just before the last, so usually play safe and take it midway through. I also take a lot of other medication in tablet form, and time the doses to coincide with a meal or snack, to help them through the digestive process.

I hope this helps, it's very bewildering. As long as you are no longer losing weight then you are probably doing the right thing. Please keep in touch with your dietician too, even though they don't have all the answers.

Kind regards

Julie

[Charlie_P]

Hi Debbie,

I am sorry to hear about your ordeal. For your guidance I also have EPI (in my case it is very rare as I have been undergoing all sorts of tests and no underlying cause has been established).

However, I have been attending a dietician (my gastroenterologist gave me vague instructions as well which did not help) whom explained to me that every 4 grams of fat consumed requires a dosage of 1 Creon 10,000 tablet. Therefore the important thing is to check the fat content of what you are eating and to regulate your Creon intake accordingly.

I also bought this book (there is also an app that you can buy) which is for people with diabetes but is also helpful for persons with EPI as it indicates fat content in loads of different food items.

For your guidance, fruit and most veg (I am excluding avocado here as it is very high in fat) do not require Creon tablets as there is no fat in them. E.g. if you eat a banana or an apple as a snack, that does not require a tablet.

I hope this information helps.

Carb & Calorie Counter Book