EPI or exocrine pancreatic insufficiency

[Claire Lak]

Hi I'm new to the forum and looking for some help.

Diagnosed in 2014 with a Insulinoma a rare neuroendocrine tumour (NETs).

Had surgery in 2014 and again 2016 a distal pancreatectomy was performed It was hit and miss if I needed Creon and had no real problems until February of this year.

I'm struggling atm health wise I've been in A&E several times with chronic pancreatitis and rapid weight loss. I have seen a gastro doctor who with many other doctors and specialists are clueless to how to treat me. I have tryed to be proactive I've changed my diet big time, I take Ames vitamin and mineral supplements twice aday. I'm trying to keep fit I walk a lot as it helps me to digest my food. I'm takin 3x 10,000 Creon with each meal and supplement drink. But last week end not only I'm a struggling with chronic fatigue on going since February now I am finding that my muscles ache(feel like my legs are going to give way), headache, forgetfulness,waking in the night, pains in my chest just to name a few. I've been trying to lead a normal life but now I'm spending more time in bed.

I'm seeing my GP on Friday and want to be able to use that time to ask her to run some tests to see if I'm getting all the vitamins and minerals from my drinks and food (I eat six small meals aday) instead of coming away with anti depressants and any think else she thinks will help.

Thank you

 

[alicia kerr]

Hi Claire
I can't help you with your symptoms, which I recognise and share some of, but my experience says what you need is for your GP to refer you back to your consultant pdq for the answers you are looking for. Gps appear to have become deskilled in so many areas, they can no longer be trusted to make the right decisions in complex cases, nearly always falling back on antidepressants or CBT instead of looking at whats going on physically. A holistic look at all your ailments and requirements is not going to happen, but you can badger to see experts in the various fields you require. Its long winded but you may get there in the end or at least get some relief from one at a time of your symptoms. Good Luck

 

[Tophat1900]

Hello,
I also take creon and I used this guide to figure out an appropriate dose. My situation is different, but the dosing calculator may help you get a more accurate dose to improve digestion and gain back some weight if need be. You just have to select the appropriate condition and go from there. I was having trouble years back, but once I changed things according to the doing calculator for cystic fibrosis my digestion improved significantly.

I hope this is of some use to you. Good luck.

https://www.creon.com/hcp/cp-or-pancreatectomy

 

[Claire Lak]

Hi Claire
I can't help you with your symptoms, which I recognise and share some of, but my experience says what you need is for your GP to refer you back to your consultant pdq for the answers you are looking for. Gps appear to have become deskilled in so many areas, they can no longer be trusted to make the right decisions in complex cases, nearly always falling back on antidepressants or CBT instead of looking at whats going on physically. A holistic look at all your ailments and requirements is not going to happen, but you can badger to see experts in the various fields you require. Its long winded but you may get there in the end or at least get some relief from one at a time of your symptoms. Good Luck

thank you for your reply yes this has clearly got my Gp stumped and I am glad to say that I have an appointment with my endocrinologist in January. I have also purchased the book Primal Pancreas that another member suggested on here this will hopefully help me to move this forward in the new year. Hope you are well atm and thank you for your support.
Claire