Robert’s story

Just days before his 79th birthday, Robert was in hospital with pancreas pains and had been losing weight. He shares his story with us for Kranky Panky 2023.

Tell us a little bit about you 

“I’m Robert, I’m 79 years old. I have been with my wife Susan since 1975 and have two children from my first marriage. My 55-year-old daughter and son-in-law are very close to us, as are our grown-up grandchildren. We consider ourselves very lucky.

I have been active in politics since I was 15 and have always considered myself to be a ‘localist’. We helped save our local inner-city leisure and community centre from closure and I had a no.35 City Bus bus named after me for my work as a local historian.”

Prior to experiencing pancreatitis, would you say you were healthy?

“I was 72 years of age before I first saw the inside of a hospital. My first experiences with ill health were being diagnosed in 2015 with a congenital faulty heart valve and pulmonary fibrosis. Luckily, I have never suffered any pain or discomfort.

In December 2022, I collapsed on the bedroom floor at home in pain. The pain was so intense I thought to myself, “If I die now, that’s okay”.  It took Susan almost an hour to get me up and by 6am I was in A&E being treated, at first for suspected appendicitis. I spent six days in hospital and on the third day they found I had an infected gallbladder, caused by a gallstone. I was eventually sent home to recover, with painkillers to get me through. Christmas passed us by.”

Talk us through your first experience of pancreatitis

“There was a blip in April 2023 when I returned to hospital for a day, but in May I was taken straight back into hospital after the familiar pains returned lying in bed one evening. I’d also been losing weight, as I’d figured out that eating less helped reduce my pain.

I spent 12 days on strong painkillers for most of the time, so delusional that I thought a young man in the bed opposite was my son, and I was convinced that Susan was in the hospital looking for me at 2am one morning. I was discharged on my 79th birthday, once I began eating food.

Though the team looking after me were faultless, I have no memory of anyone telling me I was in hospital with acute pancreatitis. No one told Susan either. I read ‘acute pancreatitis’ for the first time on the discharge letter sent to my GP. They think the cause of my pancreatitis was the gallstone back in December affecting my bile duct, but they couldn’t find it in recent scans.”

How did you feel when you returned home?

I was still relying on strong painkillers to see me through each day. All of the dietary information I was given seemed contradictory, so a month later when I stumbled across Guts UK online, it was revelatory. Finally, information that explained what had happened to me. I felt enlightened, overwhelmed, and happy.

How are you now?

“It has taken my body (and memory) a long time to return to ‘normal’. I’m doing well now and consider myself one lucky old bunny! I sign off all my emails with a bunny 🐰 because I truly feel fortunate.

Guts UK’s information explained that 79% of people who experience acute pancreatitis will never go on to have another attack. I do hope that will be me, as I really don’t want to have the same experience again.

Why are you sharing your story today?

“Reading other pancreatitis stories showed me how much more help and support is needed for people who have experienced pancreatitis. I’m a great believer in prevention rather than cure, and I hope that Guts UK’s research can help to discover why some can fully recover from an acute attack, whereas others go on to experience more attacks or develop chronic pancreatitis.

I set up a monthly donation to Guts UK to show my support. In my eyes, Guts UK has the greatest of tasks in front of them. They will need far greater resources than most charities, but they are also so community-centric and close to their people. I want to help them some way towards getting to grips with guts.

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.

Our guts have been underfunded and misunderstood for too long. Together, we can change that. Donate to our life-saving research today. Thank you.

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