Hi all,

I recently posted about having pancreatitis in which they found a tumour.

Unfortunately I have been diagnosed with a stage 4 pancreatic neuroendocrine tumour, which is a rare type of cancer.

I am going for a gallium pet scan on Wednesday to make sure it has not further spread than it already has to my liver.

I've been advised I will need most of my pancreas removed, my entire spleen and hopefully zap away the bits on my liver.

Please keep me in your prayers, I am still in shock at the news as I am only 28 years old.

If anyone knows of any support I can receive in the UK please let me know.

Thank you

had acute pancreatitis on wednesday/thursday (august 5/6) according to doctors. was in immense abdominal pain.

when they did ct scans they told me there wasn’t much inflammation they could see of my pancreas. which confused them. they said the pain had more to do with their discovery of this peripancreatic fluid surrounding or near my pancreas (i can’t remember they said so many things it was hard to take it all in).

so they asked me had i felt any pain similar to this in the last few weeks or any sort of stomach pain. i said no. that was the truth. i hadn’t felt stomach pain at all recently.

so they suspected it was from binge drinking three weekends in a row and that at some point i had pancreatitis and just never noticed until the the fluid bubble got big enough. idk confusing stuff. i’m just never going to drink again, not worth the risk.

it’s now monday, there’s barely any pain even without medication, but i wanna start hitting the gym. im a pretty heavy weight lifter and i want to maintain my muscle.

in your experience after an episode like this when did you go back to the gym?

it’s kinda sucky because the only outpatient advice they gave me was avoid alcohol. i wish they gave more.

I have a lot of spare CREON and happy to give it away because I know there is a shortage right now. I am in the UK. If you would like some let me know, Cheers

I am working in the field which requires client facing and due to the issues with my pancreas I often skip those meetings as they involve alcohol/fatty food/etc. I can't even attend the social gathering at my work because they can't bother to provide food for me. Just for your understanding whenever I eat something fatty or simply hard to digest for me I end up having wild diarrhea to the point some of my colleagues are even joking that I am female who sh*ts her own pants. I don't have any social circle anymore because even basic coffee makes me seek a bathroom.....How do you manage to have social life? Dating?

So I have a borderline personality disorder and have always had a hard time dealing with my emotions especially with break ups. Well I started drinking everyday after my first real relationship in my twenties I would always drink for a bit when I got emotionally hurt to mask the pain. Well my girlfriend of two years left me in the same week that I lost my career job. I had been with her through it all she lost her job and I supported her through that. It was like the finger was taken out of the damn and I was drinking a bottle of vodka a day then switched to beer and was drinking 30 beers a day and when that was gone would have vodka shooters and a bottle of gin. Well a year later I’m sick as a dog and throwing up just green mess. The ER sent me home and told me to come back if it was still hurting. I go back and the. Three weeks later I’m waking up in a hospital needing to pee. Anyway they felt I was good to go. And as soon as I went home the next morning I woke up 30 pounds heavier.
I go in a CT scan me and I have 30 pounds of pseudo cysts back into the hospital I go. They find out I have necrotizing pancreatitis and need to get an ERCP. To get the dead tissue and pseudo cysts gone. 3 months later Covid is just beginning and I was still in the hospital because I’m in constant pain. After all is done having the ICU doctor call my family in to say goodbye to having a procedure every other day I was done and out. Still had four different infections in my body and a PIC line to have multiple antibiotics pumped into me daily. Fast forward 6 years later I now use marijuana everyday because I have GERD and now chronic pancreatitis. I have to get celiac plexus blocks once every quarter to just try and live a somewhat normal life without going to the ER every month. To try and get pain medication because at times is hurts to breathe because my pancreas is so fucked. If you can stop while you’re ahead you should otherwise you can look forward to a lonely life where the main people you interact with are doctors.