Darren's symptoms worsened around Christmas time, which halted plans with family. Now he shares his story as he awaits a procedure which he and his consultant hopes will help his pain.
Tell us about you
“I’m Darren, I’m 53 years old and live in Basingstoke with my partner of 30+ years, Jason, and our two cats. I work as a Business Unit Director at a local company that I’ve worked with for decades, and they are so supportive.
In my free time, I love to go gliding as I’m a glider pilot. I also adore gardening and can’t seem to stop myself from growing things. The house is practically a jungle!”
When did your symptoms start?
“My symptoms began around April 2021. The pain was different to anything I’d experienced before, a dull, knot-like pain that was deep in the centre of my abdomen, right below my ribs. Every time the pain would come, I’d want to roll up into a ball, and sometimes I’d be sick. I saw my doctor a few times, but was fobbed off by them.
When Christmas in 2021 arrived, I had to cancel hosting Christmas Day because I was so unwell. I was being constantly sick for 72 hours.”
When did you finally get diagnosed?
“In January 2022, I had my first appointment with a gastroenterologist via the private healthcare available at work. They discovered I had pancreatitis and from there, I started having more scans and monitoring. By November, my gallbladder had been removed. They found one gallstone and some sludge, and though I was better overall, I would still experience waves of horrible pain.
When I got COVID, I had my biggest pancreatitis flare yet, where I had to stay in hospital overnight. My consultant sat down with me and said, “Your liver is now under strain. You’re young and fit and if we can help you by potentially doing a resection of your pancreas in the future, you might be an ideal candidate for this operation (the Whipple procedure)”.
Throughout all of the uncertainty, the Advanced Clinical Practitioner whose care I am under has been amazing. She is always so helpful, I can call with any questions. They’ve recently discovered that I have permanent damage and scarring from the acute pancreatitis attacks, so my diagnosis is now chronic pancreatitis.”
How has pancreatitis affected your life?
“The Darren before pancreatitis is a very different person to the Darren now. I’m not an anxious person, but it surprised me how pancreatitis can affect you mentally. There was a period where I genuinely thought I was dying, where the thought of food (I am a huge foodie!) would make me sick. I didn’t want to garden, go out with Jason or do anything.
Friends, family and Jason are a huge support. I’m fortunate to have a supportive and understanding employer too. Jason never makes me feel as though I’m stopping him from eating particular foods, or experiencing things. It’s easy to feel like I’m holding him back, but when he knows I’m not well, he gives me so much attention, love and care. I’m in awe of his patience, he always checks in on me or makes me a hot water bottle, giving me space if I need it.”
How are you doing more recently?
“I was 16 stone, and now I’m a healthier 12.5 stone and managing to maintain that weight. I can even fit into Jason’s clothes! I love my wardrobe now, and I’m happy to say I’m cooking again and eating better, I even made a lasagne for my mum just the other day.
Part of me feels like I’m waiting on the next attack, as though it lies just around the corner. Discussions with my consultant are becoming more and more regular, and he would like to do the Whipple procedure (removing the head of the pancreas, first part of the small bowel and bile duct) soon. Though I naturally have some anxiety surrounding this procedure, I’m approaching it with positivity. It’s really important that when you read up on your health, read the right information, as Google can be a frightening and incorrect place. This procedure has been inevitable for some time now, and I feel ready.”
Why do you support Guts UK?
“I found Guts UK before I was even diagnosed with pancreatitis, and thought I might have Irritable Bowel Syndrome (IBS) or a stomach ulcer. They’ve been with me through my journey, and so I always support them by fundraising for my birthday. It’s the Kranky Panky stories that I find so helpful. Everybody has such a different experience with pancreatitis, and I love to hear these stories as it’s how I have learnt everything I have about pancreatitis. You can’t pick up one document and suddenly understand this complex condition, but you can read the stories and gradually grow your understanding. Now, I even call my own pancreas Kranky Panky and it always allows whoever I’m talking with to laugh after a heavy conversation.”
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.