Nicky’s story

In September 2018, Nicky had a terrible pancreatitis attack. He felt like he was dying. In hospital, he developed sepsis, multiple organ failure and many other complications. He never thought he'd walk again.

Tell us a little about you 

“I’m Nicky, I’m 50 years old from Liverpool, married to Debbie and father of four children, Charles, Richard, Jessica and Lewis. I have recently started working in nutrition, but before that, I worked as an electrician for 30 years! I enjoy football and spending time with my three grandchildren. Having grandchildren is great, because you can do all the fun things with them, and then hand them straight back!”

Can you remember when your symptoms started? 

The warning signs started at the end of 2017. I was working away from home and in the middle of the night in the hotel, this pain in my abdomen started and it left me on my knees. I was in agony and remember feeling terrified, but the pain went away. Around this time, I started talking to my GP who didn’t really know what it was so they mentioned Irritable Bowel Syndrome (IBS) and sent me on my way after my blood tests came back as normal. 

In June 2018, I ended up taking myself to A&E with another attack of pain and at this point, they mentioned gallstones and pancreatitis. They contacted my doctor, and said, “If you don’t hear from us within a week, call us”. Unfortunately when I did call, they had no record of any of the tests I’d had. My doctor booked me in for a consultation to have my gallbladder removed, but two days later, I had another attack.” 

Talk us through your next attack 

“It was September 2018, and this attack was bad. The pain was indescribable, like someone stabbing me in the middle of my stomach. I can’t compare it to anything. You feel like you’re dying.  

Debbie rushed me into hospital in the car, but I’d passed out from the pain before we got there. The hospital took me in, and I suddenly became very unwell and was quickly transferred to intensive care. I developed sepsis, multiple organ failure and many other complications. I had severe acute necrotising (dead tissue) pancreatitis. 

I ended up spending five months in hospital. Most of my pancreas had died, and I underwent a variety of different procedures, many to remove the dead tissue and fluid that had formed in my pancreas. I had to have a feeding tube. Debbie never left my side. She was there from 9am to 8pm every single day, and her own business struggled as a result. 

The hospital I was in at first wasn’t a specialist centre, and people there seemed to know so little about it. But eventually when they transferred me over to the specialist centre, the team were incredible there. They really were unbelievable.”

How long did it take to recover from this? 

I’d gone into hospital in September 2018, and I was finally coming home at the end of January 2019. I didn’t go back to work until eight months later, and even that was too soon. I had to build my strength back up, and I’d lost four stone in hospital. 

I had a shorter stay in hospital due to an infection, and then in the July of 2019, I went back to hospital to get my gallbladder removed.”

How are you now?

“If you’d have told me three years ago that I would be playing football again, I wouldn’t have believed you, but I am. I didn’t even think I’d ever walk again. I feel as fit as I’ve ever felt. Pancreatitis was life-changing for my family and I, but I got there in the end. 

I have type 3c diabetes, and learning to live with that has been a learning curve, but I am well. Pancreatitis has changed the way I live, but not how well I live.” 

Why are you sharing your story? 

It’s really important to raise awareness and to try and help someone else out with my story. I’ll tell people about my experience of pancreatitis, and they’ll say, “Oh I know someone who has pancreatic cancer too”. Then when I explain that I didn’t have cancer, they look at me as if it’s not that serious, but if only they knew. This is why awareness is so important. Even when I was telling a nurse that I have type 3c diabetes just recently, she said, “What’s that?” If this story helps that understanding, then it can only be a good thing.” 

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.

Our guts have been underfunded and misunderstood for too long. Together, we can change that. Donate to our life-saving research today. Thank you.

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