Barbara’s Story

Leading up to my pancreatitis attack, I had no symptoms whatsoever. Around lunch-time one day, I started feeling unwell. I went for a lie-down on the bed. This very quickly turned to me writhing around in pain. I told my husband to call an ambulance straight away.

I often think about people who have had to experience such pain and fear all alone. I feel so lucky that my husband was at home. The ambulance arrived and I was taken straight to hospital, though I can’t remember even leaving the house. The pain was just so overwhelming.

I also can’t remember much of being in A&E. I was so unaware of what was going on. As I now know can happen with severe acute pancreatitis, my organs began to fail. My kidneys and lungs failed. I had to have dialysis, a tracheotomy and four blood transfusions. At one point, I remember counting eight doctors and nurses in the room with me.

I was put into an induced coma for a week and I spent a whole month in intensive care. I had to learn to walk and speak again.

Due to Covid-19, throughout the vast majority of my stay, I was alone. This was very straining on my mental health. My daughter and grandchildren would video call me though, even when I couldn’t speak. They told me about their day and my beautiful grandchildren would read to me. They never even seemed frightened, which was a great comfort to me.

The hospital were outstanding. The nurses, doctors and cleaners; everyone I met was amazing. They were a true support network for me. The hospital would also speak to my family every single day.

I had never heard of pancreatitis before. I was aware of the pancreas to a certain extent, because my husband is diabetic, but I had very little understanding. As pancreatitis sounds so much like appendicitis, early on in A&E I asked to team to ‘please just take my pancreas out’. But of course, now I know that would never have been an option.

I’m so pleased to be back home now with my loved ones, after 98 long days spent in hospital. Gallstones caused my pancreatitis and as soon as I am ready and the Covid-19 situation is better, I’ll have my gallbladder removed. When I first arrived home, I couldn’t even get out of bed on my own as my legs were so heavy. I had lost my independence and dignity.

As I write this, I’m very, very tired. It’ll take me a good year to recover. I can’t walk far at all. I get very little pain now, but I hadn’t used my muscles in months in hospital, so I had to learn to walk again.

It all comes down to more knowledge and awareness for pancreatitis, which I hope is what sharing my story will do. My daughter Michelle started a fundraiser for Guts UK. As I spent 98 days in hospital, Michelle walked/ran/cycled 9.8 miles a day for 98 days. My grandchildren also got involved. 7-year old Noah did 98 skips with a skipping rope and 5-year old Imogen hopped 98 times a day. They have raised over £1,000 for Guts UK’s research into pancreatitis!

Guts UK is the only UK charity funding a research fellowship into pancreatitis.

We are dedicated to finding an effective treatment for this devastating condition. People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.