This story is part of the Guts UK Pancreatitis Awareness Campaign.
Karen Easterling’s Story
My name is Karen Easterling and here is my story. Three years ago I hit the big 50. I was in the prime of my life, or so I thought. I was happily married with three grown up sons. I loved my job, having worked my way up as a school teacher to become a senior leader. I then took on the extra role of SENCO, which was the result of my dreams. I’d always planned on becoming a special needs teacher helping children gain the best education and supporting their families. Here I was starting this new chapter. I started my Masters degree based on special needs, which I needed to fulfil my role. The only problem was it was really time consuming. My working week was already overrun with holding down my full time commitment to teaching. I started to feel unwell. The acid reflux that I’d suffered with over the last 10 years seemed to intensify. My doctor said it was probably stress. Well that was fine then. We all have stressful lives, right? No, this was the start of the nightmare.
After a late meal of take away pizza I awoke at 3am with pain in my stomach. I fidgeted and tried to find a comfy position in bed thinking it was likely to be trapped wind. I rolled onto my stomach and tried to burp. Nothing. It wasn’t helping. I tried all the usual things: walking, visiting the bathroom, painkillers and hot water bottle but nothing worked. I woke my husband up to inform him I was dying and he needed to do something. He rubbed his eyes and asked me what he should do! I rolled around in agony for a couple of hours and slowly the pain eased.
The following day I went to the doctors after work and they thought it was probably an ulcer. They gave me some acid relieving tablets and I went off on my way. Two weeks later it returned with a vengeance and this time I went in an ambulance to hospital. The paramedic had hoped a mouthful of Gaviscon would help but it didn’t. By the time I reached hospital he realised it was probably gallstones. I was rushed into A&E and I felt like an extra in Holby City. Nurses were running around me jabbing me with needles and sticking on wires. I couldn’t speak as I was too busy coping with the pain. They asked me how bad the pain was and all I could compare it to was childbirth but much worse. They started checking me for a heart attack but I knew it wasn’t that: I always watched my diet and limited my intake of fats.
Eventually they managed to stabilise me. They gave me morphine and the pain started to subside. The following day I had a scan and they found 5 gallstones. The gallbladder was swollen and damaged. The technician compared my gallbladder to a paper bag filled with marbles and then shaken up vigorously. She looked at my pancreas and mentioned it was swollen. One of the stones had blocked the main duct and the pancreatic fluid couldn’t get through so was backing up and started to digest the pancreas itself. She said it proved why I was in so much pain. I was relieved it was nothing too serious. I would have my gallbladder removed and be back to work in 2 weeks. How wrong I was.
I needed antibiotics to settle the infection in the gallbladder before I could have surgery. It was also nearing Christmas so the hospital said they would be rather busy and I’d need to go on a waiting list. Six weeks later I’d been on antibiotics for five weeks and I was getting worse. Now I had the most dreadful diarrhoea to add to the pain. I’d not been able to return to work or university for my Masters. I mentioned the pancreas to the hospital and they denied there was a problem. ‘No, just gallstones’, they said. But it wasn’t. I eventually landed back in hospital in a lot of pain after a Locum at my GP surgery explained that my blood tests showed I had pancreatitis and the hospital weren’t being honest with me. At the hospital they decided the gallbladder needed to come out but still denied it was an issue with the pancreas. On 19th December 2015 they removed my gallbladder. Surgery went well, I was assured, but they’d keep me overnight rather than send me home that evening. I was glad as I needed to sleep. The following day the Consultant appeared and discharged me. I asked about my pancreas and she informed me that yes it had been swollen but now the stones were not blocking the entrance to it I would be fine. Several weeks went by and the GP rang every couple of days to see how I was doing. I wasn’t. I felt very unwell, I kept being sick and had the worst case of diarrhoea.
Over the next three years I went back and forth to different hospitals, each time there was a three month wait to see a specialist. They’d perform many tests: MRI, CT, MRCP, EUS, endoscopy, colonoscopy, barium enema, repeat bloods. The list went on and they discovered I had a small head of the pancreas but they didn’t know why. Meanwhile I joined Facebook groups, read journals about pancreatitis and learnt as much as I could about the disease. Eventually they agreed I had pancreatitis brought on by gallstones. The damage didn’t show up on the scan but my blood and stool tests showed I had a pancreas which wasn’t working well. I’m now on enzyme replacement therapy capsules which I take with my meals because I have pancreatic enzyme insufficiency. I follow a careful diet which excludes most food groups and swallow countless supplements to make up for my absorption issues.
I still feel very unwell as anyone does who lives with this cruel disorder. I tried and failed to return to work and was unable to complete my Masters degree. My life has come to a standstill and I do not enjoy it anymore. I live with chronic pain and tiredness. The diarrhoea is a daily nightmare. I’ve had to fight my way through to a diagnosis and this shouldn’t happen. I learnt that chronic conditions are not dealt with at A&E. My numerous visits to A&E were often a story in their own right. I’m still waiting on results from more tests I had in August and I ring the Doctor’s secretary regularly to chase up why I do not have an appointment for results. Depression sits heavy at my door and I’ve learnt to live with the bad days when I just go to bed with painkillers and try to ride out the storm. I wouldn’t wish this illness on anyone and plenty of research needs to be done to find out how we can repair the pancreas without damaging it further in the process. Hospitals need to be honest and open and explain there isn’t treatment available. I don’t know what I would have done without the Facebook groups who validated my pain and my concerns. They kept me fighting.
What can you do?
Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!
Guts UK is proud to fund the only fellowship into pancreatitis in the UK. However, one fellowship every three years is not nearly enough for this potentially deadly condition with no specific treatment. We need to do more. Help Guts UK fund more research to find a treatment for pancreatitis by donating today.