After being diagnosed with acute pancreatitis in 2005, Mandy continued life as normal for 15 years. However, in 2021 she started experiencing an almighty pain again.
I’m Mandy, I’m 56 and I live in the Midlands, though lived in Wales for some time too. I have a wonderful daughter, Kayleigh, and fantastic people surrounding me, as well as my cats! Until experiencing health problems, like fibromyalgia, I worked in retail and as a chef for most of my life.
In 2005, I experienced my first attack of acute pancreatitis. At the time I worked for a very busy restaurant with a horrible boss, so I was worried about taking time off. For months I had an upset tummy and horrendous heartburn/reflux. I got myself through by taking diarrhoea tablets and packets and packets of antacids. I wasn’t eating so lost weight too.
One day at work I started with a fever and vomiting, so my daughter came to pick me up in a taxi and took me to hospital. I was diagnosed with acute pancreatitis and spent eight days in hospital recovering, until I was allowed home. I was sent home with no information or advice.
Life continued as normal for over 15 years. In July 2021, I was washing up, lifted something out of the bowl, and experienced an almighty pain on my left. I fell to the floor. I crawled to get painkillers, and a couple of days later, the pain had eased. I thought nothing more of it and assumed it to be a trapped nerve.
Then in October 2021, I was supposed to go to a Halloween party. I’m a Pagan, as are a number of my family and friends, so this is our main celebration of the year. But I had to cancel. I remember phoning my daughter, but then everything went black. Kayleigh and her husband said they found me on the floor, screaming in agony. I went straight to intensive care when I got to hospital, but don’t remember a thing.
I spent five months in hospital. I had delirium and was convinced they were trying to kill me. I called everyone I knew, asking them to come and get me, so Kayleigh had to take my phone away. I even punched a doctor. My organs were failing, I had sepsis and a big arterial bleed. It must’ve been terrifying for Kay to see her mum like that.
I’d lost four stone in weight. They found gallstones and sludge in my gallbladder and said when I was well enough, they’d remove my gallbladder. I was finally allowed home. I left for home with no follow-up plan, no information or advice. I also left with no knowledge of what had happened to me and my body, during those five months in hospital.
I had to learn to walk again, I had carers daily as I couldn’t clean myself. But over the following months, I was in and out of hospital for various reasons, including organ failure and sepsis. They rescheduled my gallbladder removal operation three times. I often wonder if this had gone ahead as planned, if I’d have had all the additional hospital visits.
I had a wonderful physiotherapist and although the vast majority of nurses were absolutely wonderful, during my last hospital visit, one nurse came to give me insulin first thing in the morning. I asked her, “Why are you giving me insulin?”. She replied, “For your diabetes”. I informed her that I’m not diabetic, and she argued back with me. A while later she returned with my pancreatic enzymes and said, “Oh it was these that I was meant to give you”. I had to inform her that these are taken with food, not on an empty stomach at 8am in the morning!
Kay and I did have some laughs in hospital. It got us through. I remember a nurse had told Kay that she’d pray for me, and Kay said, “Oh please don’t say that to Mum, she’s Pagan. She’ll throw something at you!” Kay bought me a bunny that says ‘I love you 3,000’, an Avengers Endgame reference, that I always took with me to hospital. The nurses loved it, and called him Tony.
My cousin, Carl, who is more like my brother, was also wonderful. He and his wife took me to the garden centre in my wheelchair and helped Kay endlessly when her Mum was in hospital.
During recent months, I’ve been doing much better, but that is all thanks to Guts UK and the Facebook groups that I have found. This is the only place I have had any information or advice from. My hospital and GP have sent me nothing. They even told to take my pancreatic enzymes incorrectly.
I’ve been thinking about how I can fundraise for Guts UK one day, as I just don’t know where I’d be without this community. Reading these stories break my heart and make me so frustrated, but they’re so important. You hear so little about the pancreas, this little organ that can cause so much damage. But I want people to know that you can make it through. There is light at the end of the tunnel. It’s good to be back home with my needy cats, and my crafts.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.