Rachel’s story

Tell us a little about yourself 

“I’m Rachel, I’m 20 And I’m from Kirkcaldy in Scotland. I live alone in my little bungalow and my hobbies consist of gaming or going to concerts when I’m not poorly!”

Can you describe when your pancreatitis symptoms started and what they were? 

“My symptoms started around August 2023. I experienced severe pain in the upper left side of my stomach and vomiting, which worsened sometimes after nights out. I ended up getting a taxi to the hospital as I felt so poorly.  

From the first time I felt the pain, I knew something wasn’t right. Within a couple of days, I decided to get help when the pain was increasing and not manageable at home.”

What led to your pancreatitis diagnosis?

“An ultrasound scan, an endoscopy (a thin tube with a small camera on the end inserted via the mouth) and multiple amylase tests (tests done that can indicate the presence of pancreatitis) led to my diagnosis in September 2023. 

Unfortunately, during my time in hospital, I was offered little to no support and felt not many doctors or nurses had knowledge of pancreatitis. I felt isolated and alone. I was given intravenous fluids (fluids via a vein) to keep me hydrated as I couldn’t keep anything down and I was prescribed pain medication.  

I’ve had numerous hospital stays since my diagnosis which involve multiple scans and I’m usually in hospital for anywhere between two to five days each time.”

Had you heard of pancreatitis before your diagnosis? 

“I had never heard of this condition before, and neither had anyone in my family. People I’ve spoken to have no idea how serious it is. When I told my family, they were shocked and confused, as I was when I received my diagnosis. We didn’t know pancreatitis can affect young people.“

Is there anything you wish you had known about pancreatitis before your diagnosis? 

“I feel that pancreatitis is a condition that healthcare professionals need to take more seriously in order to treat it effectively. I wish that I hadn’t accepted my symptoms so quickly when I knew deep down that something was wrong. I didn’t feel believed, and I was made to feel that I was exaggerating my pain. The pancreas is such a sensitive organ, and for me, stress can cause a flare-up of symptoms. I am learning to put my health first without feeling guilty.“

How has pancreatitis impacted your life? 

“It has impacted my life in every aspect. I can’t work or travel far from my fear of a flare-up of symptoms, but I’m trying to make progress. My social life has changed dramatically but I’ve learnt that I can still make good memories, I just have to make some adjustments such as not trying to plan too far in advance, in case I’m poorly.   

Fatigue and weakness are difficult to deal with and I take many naps in the day to help with this. I try not to push myself too hard because I find it can cause my pancreatitis symptoms to flare. I wouldn’t wish it on my worst enemy and the pain I get sometimes is indescribable. 

Luckily, I have a great group of friends, and my mum is a great support. My best friend, Emma, has educated herself on pancreatitis and helps me a lot, especially on my bad days. She even comes to my hospital appointments with me, or my mum does.” 

What medications do you take for your pancreatitis? 

“Since my diagnosis in 2023, I have had my gallbladder removed after doctors thought this was causing a lot of my symptoms. I have since been diagnosed with chronic pancreatitis and take prescribed pancreatic enzymes when I eat. It’s scary knowing that there is currently a shortage, and I constantly worry if I will run out.” 

Why are you sharing your story today? 

“I want pancreatitis to become well known by raising vital awareness. Nobody around me had ever heard of pancreatitis before I got diagnosed. To anyone in the same situation as me, don’t give up and always know there is a lot of support you can get you’re not alone and we will fight this nasty disease. I have found joining online support groups a big help as it’s comforting that other people know what I am going through.”

Why do you support Guts UK charity? 

“I love supporting Guts UK charity because not many people think about or know about digestive conditions, let alone know what they are.”