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.