Ruth and Craig Potts

This story is part of the Guts UK Pancreatitis Awareness Campaign.

On November 2018 Guts UK launched a campaign to raise awareness of pancreatitis and funds for research. Please help us by sharing this story on Facebook and on Twitter tagging @GutsCharityUK.

Ruth and Craig Potts’ Story

Let’s be honest – I am not what you would think of when you imagine an event runner. I am overweight, approaching middle age and it’s been a long time since my trainers saw any action. So when I was asked if I fancied not just going for a run but throwing myself into 40 tons of ice, getting up close and personal with 500,000 litres of mud, and most likely ending up on my face and backside numerous times over the course of what would otherwise be a lovely summers day I was as surprised as the next person when I said yes. Why bother you may ask? The answer is this: my husband has lived with chronic pancreatitis for over 20 years and we live with the effect this has on our lives everyday. I wanted to run Tough Mudder to try and make a difference, even if only a small one!

Pancreatitis is an incredibly painful and debilitating condition that has a huge impact on quality of life. It is a condition that is stigmatised as an alcoholics disease, a stigma that caused my husband to have any real care that may have helped withheld for at least the first 10 years he had pancreatitis, where every visit to the hospital during attacks would lead to the standard question from the doctor of ‘ and how much have you drunk this week’ accompanied by the disbelieving looks when we answered ‘nothing’. Only after 15 years we did manage to get a diagnosis that this was due to a gene mutation and not caused by any lifestyle choice. It has caused other conditions such as diabetes and osteoporosis as well as him having to live with chronic pain every day and every night for the last 10 years. In order to deal with the pain patients are prescribed large quantities of morphine and codeine, which are taken daily alongside other strong and often addictive painkillers, with no end in sight to taking them. After 20 years of having the condition the chances of developing pancreatic cancer, the form of cancer with the worse survival, increase substantially.

There is an operation called total pancreatectomy with islet auto transplant (TP IAT) that could help sufferers of chronic pancreatitis. It can relieve the everyday chronic pain and decrease its impact, or eliminate the diabetes as well as the risk of pancreatic cancer. There have been successful trials showing this operation can help but unfortunately it has not been widely supported in the NHS. We have sent many letters, including from our doctors, Consultants and MPs, to request funding for this operation and we were very hopeful to find out that NHS England has recently released a policy document stating that it will start to fund this operation for chronic pancreatitis in England. NHS England anticipates that TP IAT will initially only be provided in four specialist centres (one per region) which already treat a lot of pancreatitis patients and therefore have significant experience in managing severe chronic pancreatitis, removing the pancreas (pancreatectomy) and transplanting islet cell, as well as having an appropriate multi-disciplinary team. To find out more about NHS England plans read their policy document Total pancreatectomy with islet auto transplant for chronic pancreatitis (adults) and/or speak to your GP or Consultant.

Charities like Guts UK are desperately important in the fight to understand chronic pancreatitis but also, perhaps more vitally, in reducing the stigma and raising the awareness of the condition and its effects on so many people and the people around them. It could mean that people like my husband would be able to access the treatment they need. This would change (and save) lives. Whatever you can donate will make a difference but so will sharing this story and the Guts UK Pancreatitis Awareness Campaign. Thank you for taking the time to visit the Gut UK website and read about our story. I also ask that even if you can’t donate that you share the page with as many people as you can!

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 ideas here!

Or join Team Guts UK for 2019 challenges! We have places, so come on board! If you want to run Vitality Half Marathon, March 10th 2019 or cycle in Prudential Ride London 100 August 4th 2019 register here. Let’s go!

More information

Find out about acute and chronic pancreatitis in our Conditions section and read tips and suggestions on how to manage chronic pancreatitis from those affected by this condition.

Ruth and Craig Potts