Hi All,
I have 3c following pancreatic cancer, and have been on creon since I left hospital in December 2020. I was sent away being told to take 3 with meals and 1 with snacks.... that was it.
For approx 18 months I was suffering badly with digestive problems (sickness, diarrhoea etc), talking to GPs and others, trying to get some help. I then spoke to a nurse from Pancreatic Cancer UK, who gave me a LOT more information than the hospital did. Don't get me wrong - thank you Royal Free for getting rid of the cancer, but the aftercare has been shockingly bad!
Anyhoo, PCUK told me I should be increasing my creon intake. Some of the people of their forums take up to 10 tablets per meal (10x 25,000 unit)!
I currently take 6x 25,000 with breakfast, the same with lunch, and 8-10x 25,000 with dinner (depending on what I'm having).
Weight has gone up in the last 6 months (I was static for a while) but that could also be the insulin.
Hi yes this is common after cancer treatment I was going to have mine at the royal free but went to Oxford instead.
There is lots to learn about EPI so I hope I can help.
Firstly epi is determined on a FET and severity of Epi and body weight.
People tend to increase there pert as there symptoms return, pain when eating, bloating, heartburn and steatorrhea and fatigue.
I became really unwell and found that I need ppis in order for my pert to work correctly.
a FET test should be done yearly as this will help you understand how your are managing your condition and if your pert is at the correct level.
it’s a difficult one as one man’s snack is any man’s meal, a persons body weight and fat contents and juggling diabetes, if that wasn’t enough.
so how do you know if your taking too much ?
what I have found is you can become constipated, your bowel movements with become bigger, you might get a irritated anus feels like you haven’t wiped properly, headaches that persist.
what if you’re increased you dose and your symptoms are not improving,
I would speak to you GI and it needs to be a GI as pert comes under the exocrine system not endocrine.
ask to be tested for a small bowel bacterial overgrowth, bile acid malabsorption and or coeliac disease.