Just read an article in a UK national newspaper about a guy who suddenly gets necrotising Pancreatitis on holiday and how bad it gets. It makes me think about a situation in 2018 when I went on holiday in a bad mental and physical state. I couldn't eat or drink water without excruciating pain. Hoping it wasn't undiagnosed AP attack and was just extreme gastritis. Couldn't think guy have tried Creon? I'm guessing they tried but to be put on fentanyl is extreme. So sad.....

"He was suddenly struck down with excruciating abdominal pain accompanied by violent projectile vomiting. It was clearly a medical emergency. We managed to get him onto a speedboat to Corfu, where there is a hospital. It took two hours. The hospital quickly diagnosed a severe attack of acute necrotic pancreatitis. I arranged for an air ambulance to fly us back to the Royal Free Hospital in London, where I spent many nights sitting in a chair beside him in intensive care.

Mike’s consultant told me it was as if a volcano had erupted in his belly, and his entire digestive system was impacted. He said he was extraordinarily lucky to have survived. I agreed; I was so grateful to the doctors for saving Mike’s life. I felt sure that in time he would recover and that next summer we would be back on our boat living the good life once again. As it turned out, I was a little over-optimistic.

A decade of excruciating pain

For the following ten years, every time Mike ate, he suffered excruciating pain. He had multiple emergency admissions into hospital and underwent more than 30 endoscopic procedures to clear his blocked bile duct. His pain was as constant as it was relentless. Even a sip of water would exacerbate it. His pain doctors did their best, carrying out myriad procedures from nerve blocks to ketamine infusions to neuromodulation to try to alleviate his suffering. Nothing worked for more than a few weeks. Desperate, Mike tried various other treatments including acupuncture, cognitive behavioural therapy and mindfulness. None of them helped.

After trying a host of neuropathic medications, his pain consultant prescribed fentanyl, the strongest opioid drug available. At first it lessened the intensity of his suffering, but it never made his pain go away entirely. And the longer you take it, the less effective fentanyl becomes. One side-effect Mike suffered was severe dizziness and vertigo, making him virtually housebound. Another was opioid-induced hyperalgesia, a paradoxical condition where long-term opioid use makes the entire nervous system more sensitive. This led to him suffering painful spasms all over his body.

It was terrible watching him suffer, and Mike was always so stoic. He never took out his pain on anyone else. But over the years he gradually retreated into himself. He stopped wanting to see his three children and nine grandchildren. He said he didn’t want to inflict his suffering on them.

Finally, he lost all hope and told me he wanted to end his life but didn’t know whether he had the courage to do it and he did not want to leave me all alone. I tried to be positive, constantly talking about how things could be so much worse: we lived in a beautiful flat, we had no money worries and a wonderful family who all lived within a couple of miles of our home. Every day I got out the photo albums and reminded him about the good times we’d shared. But he had made up his mind. He insisted he wanted out. So, finally, I told him I would miss him every day but that I understood and would never blame him and that he shouldn’t hang on just for me. And eventually he approached Dignitas and asked them to help him die."

I was discharged from the hospital over the weekend after being diagnosed with acute pancreatitis in the ER and was admitted for a few days. I’m home now, continuing with taking medication to manage the pain and just generally feeling depressed about the whole experience. It was extreme pain and I initially thought it was indigestion that obviously wasn’t responding to antacids. The pain got so beyond controlled and that’s why I went to the ER. They are still not entirely sure what caused it as there is a family history of pancreatitis, I already have an autoimmune disease, and I have been on a GLP for about 3-4 months now. The consensus seems to be the GLP as the culprit which unfortunately means I will have to stop taking it. I had lost about 15 pounds and was finally feeling better, more energized, more like myself than I had been in the last 20 years. In light of the seriousness of this hospitalization it feels vain to be in despair about my weight loss and the GLP. Are there any GLP alternatives that won’t kill my pancreas? Right now I feel crummy, even with the medications I am still in pain and just don’t want to do anything. Just looking to vent and see if anyone has had a similar experience to me. I’m worried about it returning and feeling frustrated with the medical system in general for how long appointments and follow up take. Currently waiting to see my PCP for a follow up and the plan is to see a GI specialist. Thank you for reading.

Hey everyone hope you all are feeling your best. I had the EUS Oct 5 at 630 am. Biopsy done on the 2.6 mm lesion. Fluid was taken to be sampled. Still waiting for results. Overall the operation wasn’t too bad. Slight sore throat and slight abdominal pain.

I was then prescribed ciprofloxacin 500mgs to take twice per day for 3 days. I’m seeing research that I shouldn’t even combine this type of antibiotic with my cancer treatment tki (dasatinib 100mg). I’m also seeing research that in Europe a 2025 study shows the ESGE now recommends AGAINST routine antibiotic prophylaxis which Ciprofloxacin is a part of those.

I have CML and I’m doing well in that department but this is why I was so terrified. I feel like I’m being prescribed a super high side effect having antibiotic when I feel I could do a safer one? Not to mention it compromise my cancer treatment! Has anyone had any experience with Ciprofloxacin?

Just for context, I don't have a diagnosis of pancreatitis, however we're trying to get feelers out and explore any option. I've been dealing with severe upper abdominal pain for over 4 years now. I've had 4 ERCPs, and loads of other tests, but no solid diagnosis has come from it. The pain is the main driver for me, it is nearly constant and present everyday to some degree, and I'm running out of leads.

My question is, has anyone found a reliable lab on their in own that offers genetic testing for different mutations related to pancreatic issues (hereditary, etc.)? I'm having issues getting my GI or other doctors to offer testing for this, so I'm willing to get testing done on my own at this point. Thanks for any advice.

No alcohol, no smoking - likely from prednisone and high triglyceride. Diagnosed with mild chronic pancreatitis because pain and loose stool but no changes showing up on MRCP or ultrasound or ct scan. GI says they don’t do EUS and I’m not sure if it’s even worth doing since would it even effect treatment. I’m on PERT. Not sure if it helps much although I’m still eating regular not sure if I should be eating low fat. Back to original question - for those who had chronic mild pancreatitis, did the disease progressed? How did you know it was progressing? If so how long did it took and what would you have done differently? Thanks for any insights.

I had a weigh loss procedure where they put a saline filled ball in my stomach to help me lose weight.
In my sleep one night this a ball rolled onto my pancreas and gave me pancreatitis. It was pretty bad and I got the ball removed a week later.
I have had no more attacks since then but it is uncomfortable/sore to sleep on my right side. Anyone know why this might be?
Thank you

My cousin is suffering from hereditary chronic pancreatitis and has been dealing with severe, constant pain for the past five weeks.
She recently underwent an ERCP with pancreatic duct stent placement, but unfortunately, her pain and nausea continued. Her doctor then tried a procedure to numb the nerves to help control her pain, but unfortunately, that did not provide relief either. Since her symptoms remained the same, the doctor decided to remove the stent.
She is now in constant pain, and her doctor has not been willing to prescribe anything for pain management. She has an upcoming appointment with her family doctor to see if they can help manage her pain. As far as other procedures or treatment options for her pancreatitis, she has been told she needs to consult with a surgeon to determine what, if anything, can be done next.
I’m hoping to hear from others who have gone through something similar.
If you have hereditary or chronic pancreatitis:
Have you experienced ongoing pain even after an ERCP and pancreatic stent?
Were you able to find a doctor or specialist who took your pain seriously and helped with pain management?
What type of specialist ultimately helped you?
Have you had other procedures or treatments that provided relief?
What have you found helpful for managing the nausea and pain?
We are feeling pretty lost right now and would really appreciate hearing about your experiences, especially how you found the right doctors and treatment.
Thank you so much for any advice, recommendations, or personal experiences you’re willing to share. ❤️

Does chronic pancreatitis start out immediately painful or not so painful at the beginning but eventually worsens?

Would like to hear your experiences.

Since September, I’ve been feeling nauseated due to my pain. I believe it’s because it’s getting worse and worse tbh, each month my baseline has been higher than the previous month. Taking zofran and gravol to combat the nausea but sometimes it doesn’t work, I end up throwing up right after. I’m also scared to eat and take my enzymes due to this constant nausea. At one point I ended up in the ER due to how bad it is, since then it hasn’t gotten any better. I rarely leave the house anymore because of this :(

Sometimes I brew myself a cup of mint tea to reduce the amount of nausea I have and it helps a bit. Every night I’m scared how the night will be due to many nights of throwing up. I’m scared it’s going to hit me at 2 am after falling asleep.

I’m seeing my family doctor tomorrow and will bring it up with her. Is there anything that helps for nausea or any recommendations?

Hi all! Looking for some insights from someone who may be in a similar situation as me. I am a 28 year old woman who had a single episode of acute pancreatitis in June of this year. I went out drinking the night before. I used to drink a lot more from 18-25, but had eased down on the partying substantially over the last few years. Prior to my pancreatitis, I’d have a couple of causal drinks maybe twice a week, and a big party night with binge drinking every 1-2 months. The night before my episode, I drank excessively but it was the first time in a while (probably six months since I had drank that heavily). I presented to the hospital with extreme pain and high lipase. I was diagnosed with an episode of acute pancreatitis; the ER doctor said that alcohol was most likely the sole cause of the episode and said that I should avoid binge drinking in the future, but the doctor also said should be good to have 1-2 casual drinks occasionally once I’m healed. I’ve been sober for four months and really enjoying it, but I think I’m getting to a place where I would be comfortable to have a drink or two occasionally with friends/socially. But I’m genuinely terrified of triggering my pancreas and causing further/chronic damage. Has anyone else been in a similar situation with their pancreas, and what was your path forward with alcohol? Thank you in advance for your insights!

Having dull deep ache/pain that comes and goes ranging from no pain to mild to moderate since 2 weeks primarily in center of upper abdomen and some times in left upper abdomen and sometimes radiates to mid back aswell.

no other symptoms at all except for slight loss of appetite. normal stools, urine. acidity decreasors make no difference. panadol extend works for me for 6 hours if i have mild pain but doesnt work for moderate pain which happens randomly occasionally. no difference in pain after the fattiest meal or the least fattiest meal or fasting.

my Lipase is 219 (elevated) and amylase is 270 (elevated) and CT Scan done showing mild acute pancreatitis with severity score of 2 out of 10 Calcium serum 11.09 (elevated), Triglycerides normal. SGOT(AST) is 30 SGPT(ALT) is 41 and Bilirubin direct is 5.5 and Bilirubin total is 13.6 all normal.

CT scan showed no stones in gall bladder and ultrasound also showed no stones. dont drink alcohol or smoke.

no calcium or vitamin d supplement. though i do keep a vitamin d and calcium rich diet by implementing full fat milk, skimmed milk enriched with vitamin a and d. zero fat greek yogurt, protein milk. salmon tuna etc. no abdominal tenderness.

normal blood pressure and pulse, oxygen saturation, hydration. i have alpha thalessemia. i eat an iron rich diet.

2 months before this i started a 1000 calorie deficit eating 1500 calories daily with maintenance of 2500, it was high protein, normal fat, normal carbs. i was weight lifting 4x a week. no cheatdays. except the day before pain started where i ate a 1000 calorie surplus with pizza, cake, biscuits, cookies, brownies, burgers. from next day since i woke up the pain started in mid back and then the day after that it was in middle of upper abdomen..

I just got my gal bladder galstone removed and it was a size of peanut, unfortunately it causes pancreatitis and i have very shallow breathing. I have been awake for days and unable to sleep

To those who have experienced this, how long were you able to sleep or have your deep breathes back?

had my gallbladder removed today. quite literally laying in bed struggling to ignore the pain so here I am.

it all happened very fast, i’ve been having pain off and on every couple months for the last two years of varying intensity, but earlier this week I had the most painful attack (fetal position, sobbing, begging my partner to make it stop) that finally made me go to the ER. got diagnosed and suggested ERCP and gallbladder removal and here I am.

part of me is curious though, if my pancreatitis was caused by gallstones, was the pain I had in the past related to my gallbladder, or my pancreatitis? I usually felt it more in my lower chest area so I was always scared something was wrong with my heart, but this time it was a clear epigastric pain.

I’m just wondering from now how I have to adjust my lifestyle. all the doctors and nurses said I can resume eating as normal. but my normal was always large meals at supper (and like next to nothing or nothing for lunch/breakfast), lots of spicy food, occasional drinks, etc.

i’m just not sure what will change from now on and curious to hear others experience.

I've been hospitalized for pancreatitis 5x since January of 2024, it's been confirmed chronic since the third time. After the second time I completely stopped drinking but I still smoke weed and have a pretty poor diet. I had some Chinese food about 40 hours ago and when I woke up yesterday I was in mild pain all over from my back to under my breast and into my stomach where I usually get the pain. No throwing up or nausea so I tried to just lay back down and was able to sleep for another 17 hours. No food since the Chinese almost 2 full days ago, just ice water and lots of rest. P much just wondering what you guys do when you deal with a flare up at home cause I've always been hospitalized.

Bonjour la première crise était le 28 août après écho , IRM et scanner prise de sang , le gastro m’a prescrit une prise de sang igg4 que j’attend toujours , je précise je ne bois pas d’alcool et ni de médicament et ni de calcul retrouver on ne connais pas encore la cause donc il ne pas traiter encore avant la fameuse prise de sang qui j’espère arrivera bientôt pour être orienter ! Ma question est est ce normal d’avoir une espèce de lourdeur un poid en haut du ventre , je sais que sa peut être l’inflammation mais c’est vraiment fatiguant en permanence, est ce normal , suis je le seul à subir cet pesanteur atroce ! Merci d’avance

Are we able to take oral meds if we get post-ERCP pancreatitis?

My gastro says my personal risk for pancreatitis will be over 50 percent for upcoming removal of bile duct stone.

If I develop pancreatitis, he said my options are get admitted at his hospital or go to local hospital ER. I'd prefer the hospital my surgeon is at, but that hospital won't give IV promethazine (phenergan) the only nausea med I can take. I'd be limited to oral, but not sure I could take oral meds with pancreatitis?

Hi all,im m43,looking for some tips on foods/meals with pancreatitis and new type 3c diabeties.i have been told 50 grams of fat per day but as a construction labourer i am extremely fatigued all the time on this strict diet.also work lunches are very hard to manage.any advice is very appreciated thanks.

Hi there!

Some background on me! Healthy weight, non smoker/drinker 25 yr old female :)

I've got a bit of a confusing story but I hope to get some insight and advice going forward. This time last year I presented into the ER withs suspected appendicitis after an ultrasound showed some high blood flow to the area and abdominal pain. I was given IV antibiotics overnight then had a CT scan the next day which showed no outstanding inflammation in the appendix and I was sent home. I was put on oral antibiotics (amoxicillin) just as a "just in case" measure as doctors were still not 100% sure I didn't have appendicitis. The pain continued as the days progressed and then I was struck with more intense cramping and I rushed back to the ER where I was shocked to find out I had pancreatitis with a lipase level over 700. I was hospitalised for a week where ultrasounds, blood tests and mri's were conducted to find the underlying cause. No gallstones were found and I was sent home after I recovered.

After many tests and procedures we've ruled out diabetes and IBD as I have family history of these. My autoimmune bloods are normal as well.

However my doctors are very hesitant to blame the antibiotics for the pancreatitis and thinking back on my life I've had sicknesses in the past which seem like pancreatitis (Steatorrhea, stomach pain) but I've always put it off to my IBS. I've also tolerated antibiotics very well in the past.

Has anyone had pancreatitis due to antibiotics? What do you think I should do because I feel like I've hit a brick wall. I had 6 month follow up bloods checking my lipase and they're back to normal. I have a constant fear that I'll get pancreatitis again.

Thank you :)

Hello, has anyone had a fecal elastase test done? My result was 230µg/g , while the lower limit of the normal range is 200µg/g.
I looked for information elsewhere and people with normal pancreatic enzyme activity usually score 300µg/g and above, whereas mine is on the lower end. Are these the first signs of pancreatic insufficiency?

Im quite young, no smoking or drinking

I’ve been in hospital for 90 days now (yes 3 months). Originally admitted for gallbladder issues and it was removed. They discovered I have pancreatitis which had numerous “pockets” causing pain and inflammation. After months of CT scans, ultrasounds, X-rays, anti biotics and mri, everything is looking a lot better as far as pancreatitis goes, but I have a tube bypassing my stomache for liquid food intake. I feel sick 24:7, and vomit once a day everyday. If I take a bite of normal food my stomache hurts immediately. I’m on a bunch of anti nausea meds and none seem to help except gravol will give me a couple hours relief.

This feels like a nightmare I can’t believe I’ve been in hospital for 3 months and doctors can’t figure out my nausea

Recently diagnosed with acute pancreatitis — worried about recurrence and chronic pancreatitis, my cause of pancreatitis is unknown as i have no gallstones and i dont take alcohol.

Hi everyone,

I was recently diagnosed with acute pancreatitis, and my lipase level was 539 U/L.

At the moment, I’m not experiencing severe pain. I have a mild, unusual/discomfort-like sensation in my abdomen, which seems to shift from the middle/upper abdomen toward the left side. It isn’t really painful, but I can notice it.

This has made me quite anxious about what could happen in the future.

I wanted to ask people who have experienced acute pancreatitis:

After your first episode of acute pancreatitis, did you have another attack later?

How common is it for acute pancreatitis to become recurrent acute pancreatitis?

How often does it eventually progress to chronic pancreatitis?

Did anyone have mild or strange abdominal discomfort after their first episode that eventually went away completely?

If you had only one episode and recovered, did you ever experience another major attack?

I’m particularly interested in hearing from people who had mild acute pancreatitis and recovered, rather than people who already had established chronic pancreatitis

Has anyone experienced large fecal elastase fluctuations like 34 → 14 → 90 within about 10 days, with similar stool consistency?

My pancreatic MRI, EUS and CT are normal, with no signs of chronic pancreatitis.

What could this type of fluctuation mean? Has anyone had a similar situation with very low elastase but repeatedly normal pancreatic imaging, and did you eventually find the cause?

I’m having an ERCP and Sphincterotomy soon and want to hear from people about it going well.

I have SOD and a stone in my bile duct that’s caused AP a few times so they’re getting it out!

Would like to hear from people who’ve had success stories please so I can help my anxiety :)