After experiencing pancreas pain during her childhood and teenage years, Iwona experienced her first acute pancreatitis attack in 2005. Attacks followed and she was diagnosed with chronic pancreatitis.
Tell us about you
“I’m Iwona, 39 years old living with my husband, Joe, our two children, our cat and dog in East Riding. Ourdaughter, Rose, is seven and our son, Kazik, is two. I love spending time with friends and family, cooking and being together. We love travelling and walking the dog. I’m Polish, and moved to the UK almost 20 years ago, so we try and get to Poland once every couple of years too.”
When did your symptoms start?
“During my childhood, I remember my parents gave me peppermint oil to help my stomach pains. When I was 18, I had to take a long time off University because of my stomach pain, which I now know was pancreas pain.
Back in 2005, I was living in Stafford and I had my first acute pancreatitis attack. Because I’d been at a party and drank beer, I was told it was alcohol-induced. It was a shock at the time, but life quickly went back to normal.
In 2007, I had another attack, which they also said it was caused by alcohol, but told me to continue as I was. But I started losing too much weight and stopped feeling hungry. My GP said, “You should be happy because you’ll never get fat!”
Over the next 16 years, I saw my GP multiple times as I was fatigued or dizzy, in pain or feeling generally unwell. It would be blamed on my hormones during and after pregnancies, or brushed off completely. My doctors saw a young woman in her 20s/30s who looked healthy and ‘fine’, but I wasn’t. My stools had been yellow, loose, floaty and smelly for years, but no one ever asked about them.”
What happened in 2023?
“In March, I started with pain around my pancreas area. I hadn’t been into hospital for 16 years with my pancreas, so I was sure it was just something I’d eaten. It continued for a couple of days, and I said to Joe, “I think this could be pancreatitis”. He replied, “But you don’t drink, how can it be?”.
The next evening Joe was worried about me as I looked pale and unwell, so we went to an out-of-hours GP. The GP said I have acid reflux or trapped wind, and I explained, “This feels like pancreatitis”. The doctor told me, “You don’t look unwell enough to have pancreatitis”. He said I could either go into hospital now or have a blood test tomorrow. He made me feel like I was being dramatic, so I opted for the blood test.
Two days later, my GP called me and told me, “Get to hospital. Your bloods show you have pancreatitis”. “
What happened at hospital?
“The consultant flagged that this was my third time in hospital with pancreatitis. He asked about my bowel habits and my symptoms, and said, “I think you might have chronic pancreatitis; I’m going to book you an ultrasound scan”.
After the scan, my diagnosis of chronic pancreatitis was confirmed, and pancreatic exocrine insufficiency. They explained that my pancreas looks ‘wrinkled’, and that I should take prescription pancreatic enzymes with food. My consultant agreed that he didn’t think I drank anywhere near enough for pancreatitis to be caused by alcohol. “
How has the rest of this year been?
“I’ve flared up every month this year. The fatigue, hair loss and nausea are so hard. I was so pleased to see a specialist gastroenterology dietitian, who has been so helpful. She told me how to take my prescription enzymes correctly, and increased my dosage too which has made my stools and symptoms better. She listens to me and calls to check-in on me.
I’m always asked how much I drink. I very rarely drank before pancreatitis, as I know what it can do to families. One consultant asked me three times, “Are you sure you don’t drink?” I want to be believed when I say no the first time.
Finding Guts UK, the NICE Guidance for pancreatitis and the Facebook groups has been so helpful. Joe and I can trust Guts UK’s information and we regularly revisit it. It helps us find information that isn’t provided to us by my consultant. I also feel less alone.”
How do you feel now?
“I like to be in control, and my health feels so out of my control, which is extremely difficult for me. I’ve self-referred myself to a counsellor for the mental aspect of things. It’s the little moments I hold onto. I can still go out on a good day and enjoy time with my family. It might mean I will get home and be exhausted afterwards, but I can still find happiness.
My hope for the future is for healthcare professionals to sit down with people who have just been diagnosed with chronic pancreatitis. Tell us the truth. Tell us it is life-changing. Tell us the worst-case scenario, and the best. Give our families all the information, because although it’s a lot to take in, we deserve to know.
In November, Joe is fundraising via a bake sale at his work for Guts UK and the whole family will be baking! It helps us to know we’re doing something to change the future, for more research, information and awareness for pancreatitis.”
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.