Chanelle developed acute necrotising pancreatitis because of gallstones. This is her story.
My name is Chanelle, I’m 27 years old and I have suffered from acute necrotising pancreatitis, caused by gallstones. I am posting sharing my story with Guts UK to raise awareness and so others affected by my condition know they are not alone.
The start of 2019 was looking to be a great year for me, as I had started a new job which changed my life in so many positive ways. I was working from home and finally felt happy in my career.
In March, I began feeling poorly on and off for months. I had numerous tests, which showed there was an infection in my body but the doctors couldn’t seem to pinpoint it.
One day in September, it was just like any other day at work. But I began really suffering with stomach and chest pain. I tried to manage it with paracetamol, but it wouldn’t budge. I called 111, who sent an ambulance and I was admitted to hospital for 2 nights.
At hospital, I had several blood tests and scans, where they diagnosed me with gallstones. I will never forget when they said, “You must cut down on alcohol”. I said, “I don’t drink? I drink 2 or 3 times a year, if that.” It was horrible at 25 years old trying to convince someone that your life doesn’t revolve around alcohol. I was discharged, with the plan to treat me as an outpatient for gallbladder removal.
13 days later, I had just finished dinner after a normal day at work. I went upstairs to the bathroom and the next thing I knew, I was crying out in pain. The pain in my back was unimaginable. Sitting, standing, laying down – nothing would ease it. I shouted for my mum to call an ambulance. I knew something wasn’t right.
I remember waiting in A&E being sick and crying out in pain. The next thing I remember is waking up in the high dependency unit. I had pancreatitis and when I was told, I remembered my mum having this almost 16 years ago!
I was constantly monitored and looked after, and at one point I was admitted into intensive care. My pancreas had an abscess that they needed to monitor. I remember a group of doctors standing over me, placing a line in my neck. I was petrified at this point. Why am I alone? Where is my family? Am I dying?
Most of my time in ICU I can’t remember. I remember waking up and not being able to move. I couldn’t lift my legs, as they had swelled so much. Why can’t I walk anymore? I couldn’t even use the bathroom by myself. I felt useless. I began suffering with delirium, which was as frightening for my family as it was for me. I was a totally different person. Years on, this still affects me and my memory.
I spent a month in ICU, as I developed sepsis and pneumonia too. My pancreas had turned necrotic (the tissue was dying). When people become seriously unwell with severe acute pancreatitis and require ICU care like I did, 1 in 4 will die. My family were told to prepare for the worst.
After waiting three days for a bed to be open in the specialist hospital, I was transported over an hour away from home by ambulance at 3am. This began my five-month-long hospital stay. I was told I would be in hospital over Christmas and New Year (and my birthday is on New Years’ Eve).
I was fed via a feeding tube for my entire stay in hospital, and I lost 6 stone in weight. The malnutrition caused my hair to fall out in clumps. I had to learn to walk again. Pushing myself up off the bed was always the achievement of the day. Standing up to have a shower for the first time was terrifying. I thought I would fall.
In March 2020 I was discharged, just two days before the world locked down due to COVID. They felt I would be safer at home than in hospital.
My mum & nan became my carers. We had no access to nurses, even though I had two open wounds that they were draining. Once I was upstairs, I couldn’t go back downstairs as it was such a struggle.
I will now take pancreatic enzymes with the food I eat for the rest of my life. The mental affect of pancreatitis has been the worst part, which no one prepares you for. The support has not been there either after such a traumatic event. I wish friends and family could understand how hard we’ve had it, and still feel like they can involve us. We haven’t disappeared, just because we have an illness.
I waited 18 long months for my gallbladder removal, and it has now been 5 weeks since surgery. I don’t feel much better. There are symptoms from the surgery that I didn’t have before. My hair has gradually grown back. I battle to remind myself every day that I am not lazy for not being back at work yet. I am letting my body recover. I will know when I am ready."I am posting sharing my story with Guts UK to raise awareness and so others affected by my condition know they are not alone" - Chanelle
There is no effective treatment for pancreatitis. There is no cure.
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