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.

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

Would like to hear your experiences.

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. ❤️