Vishnu shares with us how pancreatitis is always in the back of his mind and why he feels now is the right time to share his story.
Tell us about you
“I’m Vishnu, I’m 34 years old and I grew up in Birmingham, but have lived in London since I moved for University. I studied engineering and then went onto work in banking, then in renewable energy.
In just a few weeks I will be marrying my partner Robyn, who I met via a mutual friend . We have one wedding this year, the Church wedding, and then next year we will have our Hindu wedding.“
Can you remember your first pancreatitis attack?
“My first attack was in 2012, and I’d gone to visit my grandma. I had something to eat and half a glass of wine, and the next thing I knew the most horrific stomach pain started. I was vomiting bile and writhing around in pain that was so severe I could barely breathe through it. It was like a constant spasm in my belly. I’d had what I thought was indigestion that wouldn’t shift, but this pain came out of nowhere.
An ambulance took me to hospital, where I stayed for three weeks after I was diagnosed with acute pancreatitis. They thought gallstones had caused my attack but quickly realised they hadn’t after more scans. The three weeks were full of ups and downs, getting better and then worse. It was a huge shock to the system, there were no warning signs. I was healthy.
When I was sent home I had no information, support or anywhere to go. There was little information out there and doctors didn’t seem to know much about pancreatitis either.”
What happened afterwards?
“My first attack triggered further investigations, so they checked for hereditary markers that might’ve caused pancreatitis, but nothing came back. At this point, I was having an average of two to three attacks per year that required hospitalisation. For precaution, they ended up removing my gallbladder anyway, even though they found no stones. As a result, I take bile acid sequestrants for Bile Acid Malabsorption.
In 2019, I had an endoscopic procedure (ERCP) to place a stent in my biliary duct and minor pancreatic papilla to open it up. They made slits to enable them to put the plastic stent in correctly. I had 18 months free of a major attack afterwards. Whether this was due to the surgery or not, I can’t be sure.“
Talk us through your experiences in hospital
“I’ve been to six different hospitals in my time with pancreatitis, and the knowledge and care differs so much between each one. A&E is often a struggle for me, as I explain my pancreatitis and what I need, and sometimes it is understood and I’m given pain relief straight away. But often, I’m left in the waiting room for five or more hours in agony. It varies so widely between hospitals. Once, a nurse told me she needed a urine sample before she admitted me, and I tried to explain that I can’t produce one because I haven’t drunk anything in 24 hours. She refused to admit me.”
How are you more recently?
“My current diagnosis is recurrent acute pancreatitis, and they have found no known cause for my pancreatitis (idiopathic). There is talk about replacing my stent with a metal one in the bile duct, as my last attack was just five weeks ago.
My friends, family and Robyn are so understanding of my health. Annoyingly, I seem to get a flare every time Robyn and I are due to go on holiday! I’ve had to cancel six holidays in total, which I know is such an inconvenience, but Robyn is really supportive. At work, for years I hid my pancreatitis, worried that it would hinder my career progression. It’s only recently that I talk about it more openly.
Pancreatitis is always in the back of your mind. Because there’s no cause, you find yourself desperately trying to explain what triggered each attack, “It’s because I ate too fast, or because I had a cup of tea before eating”. But it’s all nonsense. There’s never any rhyme or reason to them.”
Talk us through your role in the Pancreatitis Research Priority Setting Partnership
“I was pleased to be a patient member of the steering group that helped to decide the Top Ten Research Priorities for pancreatitis in the UK, which you can read here. This process was great as I was able to have my input, plus speak with experts and other patients too. It was a really robust process.
I’ve donated to Guts UK too, to support more research, awareness and information. I’m sharing my story today because of how much I’ve benefitted from reading other Kranky Panky stories. The time feels right for me to share, and if it helps other people, or helps clinicians to approach/think about things differently, then that would be great.“
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.