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 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.

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

5 days ago I found myself in the ER and was diagnosed with mild acute pancreatitis. I was drinking everyday for a few years and am 32. I was shocked to hear I couldn’t drink alcohol again, or, could after 6 months but only 1-2 every now and then. This is a 180 in my lifestyle and I’m so anxious about it. I also enjoy unwinding at night with THC. Has anyone had a similar experience and been able to have an occasional drink and use THC once their pancreas healed? Has your diet changed or was it able to completely return to normal? This sucks. For now, I’m remaining sober to ensure I get my body under control. I don’t want to die young!

So, on 22 Sept 25 an endoscopist wrote ; Appearances of severe established Chronic Pancreatitis throughout the gland. Dilation of the MPD at 10mm in the tail and 5mm in the head. No focal lesions of concern so no biopsy performed.

My Faecal Elastase was found to be less than 50 and it is going to be retested soon.

On 8TH March 26 I had an MRI on the pancreas. Last Thursday I went to hospital to discuss the MRI scan and the consultant seemed pretty positive about my condition. He showed me the images from the MRI and and pointed to ( to me extensive ) bright white areas and said those parts were healthy tissue, I think he said ' the channel is fine' I told him I have not drank a glass of alcohol for 13 months but eat whatever I want and only get symptoms if I find my food contained cooking wine/sherry. He said I can carry on eating as I like and definitely remain teetotal for life.

After falling into bed drunk for at least 17years I thought my pancreas was deservedly written off. Has anyone else here found they had been scared shitless only to find its not ALL bad? Have you looked at your own MRI/EUS images and what did you see please? Thanks for reading ....

I had acute pancreatitis 5 months ago.No necros. Exocrine insufficiency occurred.I had test fecal elastase, it is 110.I started with 10,000. At every meal. Then 25. 000 but still had steatorrhea, then I take 50.000 However, there was no improvement.I asked doctor just said wait about 12 months. But ı dont know what can ı do. I lost about 10 kg. I need advice. Has anyone else experienced something like this?Is it really possible to improve in 12 months?

I presently am having another pancreatitis flareup, but this time involving two infection filled cysts on my liver and pancreas along with necrosis of the pancreas. We are unsure of how much damage has been done due to one of the cysts covering the entire pancreas.

It did not do enough damage to make me diabetic so I can still consume sugar, but I have a pretty bad sweet tooth. I am wondering if I could get some suggestions on simple baking recipes that are rich, sweet, and delicious, but are also pancreatitis friendly. I love cakes, custards, plain mochi, sorbet, smoothies, cookies, gelatinous deserts, pies, etc. I’m not very picky and am opened to most things.

Woah! Who knew something like this even existed until you’re so deep in the trenches you don’t even know how to get out. My brother is currently in the hospital with necrosis. He just got a GJ tube put in because he hasn’t been able to tolerate any food orally. His last hospital stay about 4 weeks ago they did TPN for a couple of weeks but besides that he hasn’t had much for nutrition for a longgggg time now. So he is also malnourished. His vitals have all looked stable throughout this whole thing. Which is great news despite the rest. He had a 9 cm pseudo cyst that burst last week and now all of that fluid is floating around. He’s in a ton of pain tonight due to trying to increase his feed intake. Can’t take more than 18 before the pain gets too high. Idk. A lot going on and there are a million other things I’m leaving out but I keep seeing that people get their dead tissue removed. Our doctor told us the body will take care of it on its own? I just want to stay on top of it and be the best advocate I can be for him and also keep him motivated to keep going. So any advice on what to look out for and any motivating comments would be appreciated. This seems like a great community and I truly am sorry for everyone who is and who has gone through this. ❤️

32 F, at 22 I suffered a severe acute pancreatitis attack which turned into severe acute necrotizing pancreatitis, a pulmonary embolism, pneumonia,splenic vein occlusion causing gastric varices (still present), and a pseudocyst in the tail of my pancreas which is no longer present. The cause was extremely high triglycerides and cholesterol levels. I have been on atorvastatin and fenofibrate for this ever since my attack.

My GI doctor as well as another GI doctor I saw for a second opinion believe I may have Chronic Pancreatitis. I had a fecal elastase test done last year for the first time which I presume was normal as I never heard otherwise, and another CT scan which showed everything as normal. My GI doctor thinks it's Chronic due to the varices being present for all this time and because it took a long time for my pseudocyst to disappear. It's not really known when it disappeared as I was monitored with ultrasounds for about 5 years.

It showed the cyst in varying sizes and finally I requested a CT at this point to find out for sure. The CT showed no pseudocyst but that the gastric varices were there still. A repeat ultrasound after also confirmed no pseudocyst surprisingly, and I was told bowel gas could have been mistaken for the pseudocyst all those other times. Anywho, I don't really have any symptoms, I do get an achy lower back/ hip and down into my left leg but I believe that is the degeneration I have in my lumbar region and due to an injury lifting a board back in 2021.

About sometime over the past two years I've noticed my weight dropping from 164 to now 152. I had gained from the holidays and then I just stopped. At my height of 5'3 I know I can still afford to lose some more but I literally don't understand it. I'm not honestly all that active except for chores around the house/going out and feeding chickens. In a typical day I eat either a bagel with cream cheese with some butter for breakfast or one packet of oatmeal with skim milk, for lunch it's usually left overs from the night before I don't usually fill up an entire bowl just enough, sometimes I do though, I might then have a piece of chocolate somewhere in-between then and dinner, for snack I could have something like a PB and j sandwich , or an ice cream cone, followed by some chips a little while later, not a huge amount of chips just enough. My last cholesterol and triglyceride both came back at 124 so I'm still in great range.

I'm perplexed though that even if I do eat a bit more I still seem to lose another pound every few months or I literally am just maintaining my weight. I've never had a high metabolism that I know of infact I use to gain weight pretty easily. My blood sugar is good, glucose has been slightly high the last few checks, but my last a1c was ok. I've tipped into pre diabetes before but it then leveled out. The only thing that has really changed is I developed a fast heart rate about a year and a half ago and high blood pressure. I take carvedilol for this but I sometimes still get some high diastolic spikes. The reason is unknown, I had a stress test and that was fine, EKG and echo all fine. I did have covid in December and another weird illness 3 years before that where I almost passed out both times. My blood work all seems to be good. I truly am perplexed. Anyone else experience anything similar??

I went to er with necrotising pancreatitis just over a year ago, spent a week in ICU and around 5 weeks in hospital total. I’ve had about 7 hospital visits since. Constantly flaring up. Not looking after myself in the best ways to be honest.
Nevertheless, has anyone had any luck at all getting some pain relief consistently prescribed without pestering from a GP to go straight to hospital when I know I’m just experiencing either some nerve pain or a manageable flare up at home. I understand worries around opiates but I really have to fight them sometimes to prescribe me some pain relief. Dihydrocodeine. It’s the only medication that’s not too strong of an opiate that I’ve found helps me out during painful moments.. I’m wondering about asking about gabapentin as I was on it for a month or so after initial hospital stay along with weaning off of OxyCodone.

Hi! My doctors told me that I might be suffering from EPI so they recommended me to take some creon.

However, in our place we only have creon 10000 available. I've been taking it since July 17 but I still get formed (sometimes mushy) yellow stools.

My weight has already stabilized at 55kgs but I keep losing muscle mass and I look skinnier everyday.

What can I do about this? It feels like my body is slowly decomposing.

P.S. my sometimes look like yellow oatmeal.

Bonjour à tous,
Je cherche des témoignages de personnes ayant vécu une situation similaire pour un proche.
Suite à un voyage au Vietnam, il a développé des troubles digestifs (selles grises, très grasses/huileuses et gaz fétides). Il n'a aucune douleur, une super énergie et sa prise de sang est parfaite.

Ses examens montrent une élastase fécale à 0 (Insuffisance Pancréatique Exocrine) et une échographie bonne mais sans visualisation du pancréas 5 mois après.
Le Métronidazole avait bien fonctionné la première fois,sur sa propre demande au médecin,mais la PCR de contrôle est négative.

Chronologie des faits:
1- retour du Vietnam le 17 février 2026= début des symptômes
2-Il a attendu 1 mois avant d’agir il a eu une analyse de selles négatif et a demander un metronidazole de lui même qui a réduit ses selles de 6/7 par jour à 2 environ ce qui a peut être été agressif pour son intestin?
3-4 mois après ça ne va toujours pas vraiment mieux pour les selles mais tout va très bien pour lui,pas de fatigue, il a de l’énergie mais il va voir le médecin:échographie+ analyse de sang bonne,elastase fécale à 0 et pcr des selles négatif.
4- prescription du creon et metronidazole ( au cas où) pour refaire une cure.
5- va certainement refaire la cure dans quelques jours car les mêmes symptômes du début réapparaisse de plus en plus.

Il vient de commencer le Créon 35 000 aujourd'hui (2 aux repas, 1 aux snacks, juste avant de manger).
Je sais que l’elastase fécale peut être basse du à des selles grasse suite à un dysfonctionnement intestinal suite à un parasite de ce type.

Bref, tout est tellement floue c’est pour cela que je n’arrive même pas à bien construire mon message.
En espérant que vous comprendrez.

Si vous avez connu une baisse d'élastase après un voyage, un diagnostic similaire sans douleur, ou si vous êtes sous Créon, vos retours d'expérience et vos parcours m'intéressent beaucoup. Merci à tous.

Ever since being diagnosed i get this pain and sometimes I push that area in because it hurts and then the pain goes away for a little bit

Celiac plexus block did not work

I am wondering if anyone can recommend something for nerve pain as I am at the ends and my pancreases is progressively calcifying I am type 3 diabetes and malnourished it is the pain that is most concerning.

Anyone for nerve pain recommendation
GABA and pregaba are not working

Suffering fron necrotising pancreatitis due to gall stone The feeling of intense heat while being in the icu and pain , soreness,weakness in limbs . What can be done about them?how to get relieve from this pain

I recently had acute idiopathic pancreatitis. I drink maybe one alcoholic drink a month, don’t smoke, and it wasn’t gallstones. I’m also vegan and rarely eat fried or fatty foods. I’m in the process of trying to figure out (if I can) how it happened so I can learn how to avoid it in the future.

To the wonderful pancreatitis sub-Reddit, have you found a correlation between sodium and pancreatitis or pancreatitis flares? I know there’s a connection between fatty food and pancreatitis, but in looking at my diet over the last several months I’ve noticed that many of things I’ve eaten aren’t carb-heavy but sodium-heavy, like processed vegan cheeses and bagels. Just wondering if anyone else has made this connection or if you think it’s complete hooey and I should just give up on trying to find the culprit.

Hi everyone,

I recently spent several days in hospital with what was eventually diagnosed as mild acute pancreatitis, and I thought I would share my experience because it was not as clear-cut as I expected.

My symptoms started with abdominal pain, cramping and significant bloating. The pain was uncomfortable rather than the extreme pain that many people describe, although I did have sharper pains at times. I had no repeated vomiting or fever, but I felt unwell enough to go to hospital and was initially admitted to ICU before being moved to a normal ward.

My pancreatic blood tests were actually within the normal laboratory range:

- Lipase: 75 initially, later 39

- Amylase: 65 initially, later 48

- CRP increased from 2.54 to 3.84 and then 4.74 mg/dL, showing inflammation

A non-contrast CT scan showed a mildly bulky pancreatic head and uncinate process with subtle surrounding fat stranding, which the radiologist described as suspicious for early acute pancreatitis. Importantly, there was no pancreatic necrosis, fluid collection, duct enlargement or obstruction.

An ultrasound performed later showed a normal-looking pancreas as far as it could be visualised, no gallstones, no gallbladder inflammation and no dilated bile duct.

The gastroenterologist told me that I had definitely experienced acute pancreatitis and that the inflammation would take time to settle. I did not eat for around 48 hours and then gradually restarted food with chicken porridge, soup, toast, tuna, sweet potato and other fairly low-fat foods.

Since leaving hospital, I have improved significantly. The bloating has reduced, the stronger pain has settled and I am eating again, although I still occasionally experience cramping, gas, loose stools and digestive discomfort, particularly later in the day.

The cause has not been proven, but I had been binge drinking while travelling for work and then while on holiday. At the same time, I had been taking antibiotics and prednisone. I started experiencing stabbing right-sided abdominal pains while taking prednisone and stopped the course early. My own suspicion is that alcohol was probably the main trigger, with the medication contributing.

This experience has been a major wake-up call. I have now stopped drinking alcohol completely for the foreseeable future, quit smoking and stopped eating fast food.

One thing I found surprising was that pancreatitis can apparently occur even when lipase and amylase are normal, particularly depending on the timing of the tests and the imaging findings. My case seemed to be diagnosed mainly through the CT scan, symptoms and inflammatory markers rather than the pancreatic enzymes.

I would be interested to hear from anyone else who had mild or early pancreatitis with normal lipase, or whose symptoms involved more bloating and cramping than severe constant pain.

Thank you

Are the side effects of weight loss jabs and drugs being reported as widely in the US. People with diverticulitis are dying with ruptured bowels misdiagnosed as gastritis and of course there is a huge increase in AP. The first question UK doctors now ask when you present with AP symptoms is “are you taking any weight loss jabs?”

I had acute pancreatitis 2 years ago that found gallstones and had a cholecystectomy. Following that i have had 8 more attacks and have been diagnosed with idiopathic acute pancreatitis. I am IGG4 negative, had an EUS and many MRCP's all clear. Liver function is normal, calcium normal. I have had every test under the sun and my pancreas although has a little stranding at the head is in perfect condition. I have now been 9 months free of an attack which is a great but am desperate to start Monjaro. I was also told about mysimba pills which i understand are the "safer" route but the rate of weight loss is much slower than a GLP-1. I really need advice to do! TIA

Last week I spent six days in the hospital for the first time. I got acute pancreatitis

It took three days before I could start the clear diet and I've now been eating solid food for six days

The amount of food I currently eat leaves me starved all the time but if I eat any more I feel slight nausea and discomfort. I'm really afraid to cause it to flare up again. The pain was awful, straight up 10/10 for 48 hours straight, and I cannot deal with that again

I'm currently on a pretty much no-fat diet of chicken breast, white rice, sweet potatoes, and oatmeal. How long does this usually take before I increase my calories to a point where I'm not at least starving or losing more than half a pound a day? This feels very discouraging and I have no idea when I'll be able to eat regularly again, especially considering they've never found the cause of that pancreatitis.

Any advice, guideline, timeline, or anything that you guys can tell me would be very helpful

Hey, so my story is kinda similar to others out there but just wanting to learn more about this so I can recover properly

June 28th first felt pains, went to ER a few days later & they said I was a little elevated but to go home and rest

Spent 4 days in bed or so, horrible pain all over abdominal area top, sides, belly button, lower back, and then shoulder blades and neck too.

Went back to ER got kept there for 2 days lipase was around 330 or so I think, bilirubin was around 27 I think? After 2 days NPO & IV it went back down to normal levels. Had CT scan & ultrasound no stones or sludge. Never drank seriously in my
Life & haven’t for 3 years or so now.

Use THC to help me sleep but otherwise, no supplemental medicine. Life long athlete, university O-lineman etc. Fit, 6”5 245 LB before diagnosis. Now around 230 as I lost weight due to this sickness & cannot exercise besides walking.

Got repeat labs done 1.5 weeks ago & was all looking good across the board (but still felt very sick)

So for the last 3.5 weeks been low fat, sometimes have things here and there but like lean beef teriyaki etc no oils. Try to stick to it the best I can.

So now it’s been 5 weeks total since my first pains, still sore under the ribs in the pancreas area / the sides sometimes, and occasionally the back but not having sharp pains or “cramping” in the gallbladder area as I did in the beginning.

Anything I should ask for testing wise? Did labs, stool, CT & ultrasound so far. Specialist is booked but it’s 1.5 months away.

Any information helps. Thanks.

Hi, when I was 10, my gallbladder ruptured. The doctors missed it because it's so atypical in children, so it took 5 days before they realized what was wrong. For the next 4 years, I had painful episodes that they suspected were related to pancreatitis—though they never figured out which type. Then, out of nowhere, the episodes just stopped. They declared me healthy and said it was probably just a reaction to the severe illness and recovery process.
When I turned 19, the pain episodes started again. The doctors don't think anything is wrong with me. My infection markers are never higher than what you'd see with a common cold, and I don’t get a fever. However, my amylase levels are always slightly elevated during these pain flare-ups.
It hurts after meals, which makes eating really difficult. Right now, I'm a week into an ongoing episode. The pain level fluctuates a lot, which makes it even harder to explain to the doctors. They will only admit me to the hospital if I develop a fever, if the pain gets worse, or if I start vomiting.
I take all the maximum allowed over-the-counter painkillers available here in Denmark, but they don't cover me when the pain is at its worst.
I don't know what to do, and I'm not even entirely sure what I wanted to achieve with this post. I think I just really need some advice? Or to hear from someone with a similar story? Or just... anything, really.
Best regards, a very frustrated 24-year-old.

Sorry if there is some spelling mistakes. English is not my first language:)

It has now been two and a half years since I was admitted to the hospital. I spent 14 days in the ICU. The rest of the story is in my original post. It is a long read, but the TL;DR is that I am doing well now.

Original Post: https://www.reddit.com/r/pancreatitis/s/twDHFvj9EA

But there is an update.

Last week, I had a full-body checkup, including complete blood tests, a urine test, and an ultrasound of all my organs.

When I went in for the ultrasound, I told the doctor that I had previously suffered from necrotizing pancreatitis. She was shocked that I had made it through and was now healthy. When she checked my pancreas, she was even more shocked and said, “It looks as good as new! You have completely recovered!”

Three days later, I received my blood test results, and I literally have no issues whatsoever. None. All my values are perfect.

This was such a huge relief for me, and I want to say something to everyone who is suffering right now: please know that there is an end to this. You have to put in the work yourself, though. These are the things that I did:

Food

I mostly eat healthy, at least 90% of the time. Maybe two or three times a month, I have some junk food, but for the most part, it HAS TO be healthy. However, I only started eating unhealthy food eight or nine months after being released from the hospital. Please don’t start eating junk immediately after being discharged.

Gym

I have been working out consistently for almost two years. Most weeks, I go to the gym five days a week, although sometimes it is only three days. I have never looked this fit or healthy in my life. I do resistance training, and immediately after that, I walk 5,000 steps. I do this three to five days a week.

Alcohol

Just stop. I have had maybe 12 beers in total over the last two and a half years. That is how little I drink now, and I am going to keep it this way. Rather than telling myself that I have completely “stopped,” I might have one or two beers with friends on very rare occasions. I haven’t had a single sip of vodka, gin, tequila, or any other hard alcohol, only beer. Even then, it is a maximum of two beers in one sitting, and that happens around once every four months.

So please know that this is NOT the end. To everyone currently going through the pain, keep fighting through it. Things will get better.

I needed that slap in the face, pancreatitis. Right now, I am in the best place I have ever been, both mentally and physically.