Ainsley’s story

At 3am on Christmas Day, Ainsley woke up suddenly in agony and thought he was dying. He was rushed to hospital.

Tell us a little bit about you 

 “I’m Ainsley, I’m 29 years old, engaged to my partner Emily and new dad to Kobi, who is just a few weeks old! Our family is based in Bristol, and I work as a graphic designer and I’m currently setting up my own freelance company. When I’m well enough, I enjoy mountain biking, but when I’m not doing so well, I enjoy gaming too.”

Can you describe your first pancreatitis attack? 

I was 21 years old and on Christmas Eve, I started feeling weird. My stomach was funny, but I put it down to the Chinese takeaway I had the night before. Through the day, I started feeling more and more unwell and the pain wasn’t subsiding. Eventually, I called the doctor for an emergency appointment, but she wasn’t worried and said it should subside. 

Later on in the evening I started feeling better, so I went to the pub with my friends and had a pint of lager, and came home shortly after. At 3am, I woke up suddenly. I thought I was dying. The pain was like nothing else. I was rushed to hospital, where my bloods showed an acute pancreatitis attack. My enzyme levels were sky high. Other than walking down the hospital corridor, falling and throwing up everywhere, the whole hospital stay is a blur. I was there until just after New Years’ Day. 

At first, they thought my attack was caused by alcohol, but I did explain that I was always a light drinker. They had no other answer at the time, but I did have my gallbladder removed just in case, as they found some sludge in there.” 

Talk us through the years that followed 

It wasn’t long until I had a second attack of pancreatitis, and yet another hospital stay. These have just continued, to the point where I have around three attacks every year since. Functioning on a day-to-day basis was hard, and being in and out of hospital was really traumatic too.  

The pancreatitis really knocked my confidence, especially in social situations. I used to spend a lot of time outside, with friends or surrounded by people. Pancreatitis changed that, and I felt like I’d spent so much time inside that I’d forgotten how to speak to people. I always felt like an outsider. I used to be an outgoing, sporty and social person. I feel like pancreatitis stole these attributes from me. 

This condition really did come out of nowhere for me, and at one point, I was convinced that all of my dreams, hopes and life plans would never materialise. Eventually, I was diagnosed with chronic pancreatitis, but my pancreas isn’t damaged to the point it can’t produce enzymes, so I’m not taking prescription pancreatic enzymes yet.” 

Where do you find your support for your health? 

“Emily is my biggest supporter by far. None of us knew anything about pancreatitis beforehand, but my family are very clued up on it now. I can’t count the amount of times Emily has taken me to hospital in the middle of the night. She’s so aware of what I’m going through, acknowledges my pain, cooks tea when I can’t or will fetch me a heated blanket. She’s there for me physically and mentally. 

I also find the pancreatitis Facebook groups really helpful to know what other people experience, with Guts UK’s Kranky Panky stories and information on acute pancreatitis.”

How are you doing more recently? 

Eight years on from my first attack, we still don’t know the cause of my pancreatitis (idiopathic). I do feel as though there’s a lot of uncertainty about my future and I’m in-limbo between diagnoses, but I’ve been going to talking therapy for long term health conditions which has been helpful. I’m in the process of accepting the pancreatitis, as I still feel a lot of anger and annoyance about my health. The therapy has been really helpful, even just to vent to someone regularly too. 

Having a family with Emily was something that at one point, I never thought would be possible. At one point, I didn’t think I’d graduate from University. At 21 years old, I genuinely believed my life was over. But here I am with a degree and a new-born who has brought me so much joy and laughter already. It isn’t all doom and gloom. You can live and you can thrive. It might take a little longer to get there, or a different route, but you will get there.”

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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