Exocrine Pancreatic Insufficiency? Questions at the bottom?

I have Exocrine Pancreatic Insufficiency. If you’ve never heard of it, this is why I’m posting.

I don’t produce enzymes, such as fat, protein and carbohydrates.

It’s rare. But there’s a fair few people that do have it.

My gastro doesn’t listen. My GP doesn’t listen to me. I have asked repeatedly for a stoma bag, because it will actually save my life.

While I have EPI, I also have several other conditions and mental health issues.

Main ones are, Type One Diabetes, Diabetic Retinopathy (with a high risk of going blind), registered severely sight impaired, malnutrition and low bone mass.

I have depression and anxiety. Suicidal ideation and a history of repeated self harm.

I really think a stoma bag would save my life. In 5 years (maybe more) I could be blind completely. And I feel that if I have this bowel condition whilst I can’t see, there’s a greater risk that I will end up hurting myself badly due to having accidents and having to find the toilet and rushing to find the toilet. I could possibly break something when/if I fall.

It will end up being messy. Blind and a untreated, severe bowel condition is not a good combination.

With this condition, while others can eat some foods, cope with the medication and treat their illness. I can not.

I tried the enzymes, didn’t work.

I tried Loperamide and codeine, worked for a while but always running out and buying them gets expensive.

I can’t eat anything. I don’t have any safe foods, every single thing I eat no matter what it is, causes a reaction.

At this point I think I am intolerant to all food on earth.

I can’t seem to starve myself. I try diets but can’t stick to it. I don’t know why I always eat all the time, I want to starve myself I just don’t know how because every time I start to starve I end up eating.

How do I get my gastroenterologist and my GP to listen to my reasons? How can I get them to understand that it’s what I want, and it will save my life.

How do I not eat? Is there a specific diet I could try? I can’t have fodmap because I don’t understand it.

Does anyone else out there have this condition? It would be great to be able to talk to someone who has this as well?

I haven’t met anyone else with this condition and honestly that’s making everything a lot worse.

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