Katen started to experience a stomach pain he hadn't felt before. It slowly started to become constant, and it was clear it wasn't going away.
My name is Katen though most people call me Ket. I grew up in Birmingham, but now live in Slough near my two children (who are now adults!) I’m 51 years old, I enjoy walking, going to the gym and I do a lot of reading too. I’m an amateur photographer, which I’ve been doing for around seven years now and really enjoy. I spend a lot of time with my kids, and see my mum, dad, sister and brother-in-law as much as I can. Though we don’t live close, we’re still a close family.
I remember I went to a family wedding just before Christmas in 2015, and I experienced a stomach pain that I hadn’t experienced before. I thought nothing of it, until early 2016, when the pain wouldn’t pass. It became constant and it was clear it wasn’t going away. After putting it off for a few weeks, I went to see my doctor who started investigations with the hospital.
There was a period of time where I would start vomiting, every five weeks or so. During these attacks I’d take myself to A&E. I remember feeling so confused and lost, it was tough not knowing what was making me feel so unwell. It was difficult to hold food down, my temperature would shoot up and the familiar and horrendous pain returned. I could tell it was difficult for my children to see their dad in so much pain too.
At the time, I’d started a new contract with a computer firm (I work in IT and service management), but the pain was so bad I’d have to have time off work. There was no way I could work through the pain. I’m not sure they fully understood what I was going through, and I had to leave the job in the end.
A few weeks on, I was diagnosed with attacks of acute pancreatitis. I’d lost around 2 stone in weight, and I took a photo on my 46th birthday, which is painful to look back on even now. I also had a pseudocyst on my pancreas, which only added to the pain, but thankfully over the months and years this shrunk and disappeared by itself.
Eventually, I was told I had chronic pancreatitis with acute attacks. I learnt that this condition would be life-long for me, and that was a lot to take in. The hospital couldn’t find a cause (such as gallstones or alcohol) for my pancreatitis, so labelled it idiopathic (no known cause). It took around seven months for these attacks to calm down, and eventually they became fewer and further between. I was off work during this time, which gave me time to rest, but took a toll on my mental health. It was mentally, emotionally, and physically draining.
Seeing a dietitian helped me understand how I should take my prescription pancreatic enzymes, but I felt I didn’t get much help from the hospital generally. I didn’t know where to go to get support and help. I really believe healthcare professionals need to know more about pancreatitis. No one ever told me about Guts UK, and ended up finding the charity myself on social media. I relied a lot on Facebook groups and my own research.
Now, I haven’t had an attack for a while and have been discharged from hospital for the time being. I’m tired and struggle with fatigue most days. I’ve stopped smoking and drinking completely (though I never drank much), and I’ve changed my diet and lifestyle. But I’m still able to do my photography, go to the gym and go on walks, I just have to be a little more careful about it. Walking clears my head, and I find that physical exercise/activity seems to help me, as does having the kids around me.
My close friends and family are understanding and caring, but I know not everyone fully understands it. I feel like people expect me to have made a fully recovery by now, but I know I’ll never be 100% again. Sometimes people take offence if I don’t eat any food at their house, but I know I have to look after myself and stay strong with it.
I’m sharing my story today so that people out there with pancreatitis, like me, can know they’re not alone and to raise awareness of this condition. I want to give people the strength to live life. It’s a different life, but it’s still living. There is hope, you can’t lose hope, and there are people you can talk to. Having a positive attitude is really important, it gets you through the tough days.
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.