Surgical patient’s 30-year search for support group
'S**t happens' is an apt description of how a then 21-year-old David Davies dealt with having his large intestine removed after being diagnosed with an aggressive form of ulcerative colitis that could have killed him.
The rugby-loving student's world was turned upside down within the space of a month when uncontrollable bleeding from his backside left him hospitalised by chronic inflammation and rapid weight loss.
“I think mental attitude plays a big role in how people meet adversity,” said the chair of the Red Lion Group - a charity that supports people who have undergone an ileo-anal pouch procedure.
The operation involves removing the large intestine and creating a chamber or pouch from the end of the small intestine. This allows poo to collect inside the body and be defecated normally.
The alternative is a stoma through the torso that collects of waste in an external bag which is emptied several times a day.
David added: “My passion was to play rugby again, so when the doctors mentioned a permanent stoma I did everything possible to avoid it. I kicked up a fuss that caught the attention of a surgeon who suggested a pouch.”
David had three operations between 1984-85 at a time when few people had the procedure, GPs knew next to nothing about it, and there were no support groups.
He fulfilled his ambition of playing rugby again less than six months after his final operation including playing at Twickenham and Cardiff Arms Park.
David subsequently went about his business for 30 years with no medical check-ups or support. It was during a business visit several decades later that he came across St Mark's Hospital in Park Royal.
“I walked past a door saying 'pouch nurses' and did a double take. I knocked out of curiosity, asking the nurses if the description was what I thought it was. It was a real revelation to me. I didn't know they existed and they were equally surprised to hear I has been looking after myself for the past three decades!”
St Marks National Bowel Hospital, which pioneered the use of pouch surgery, helped set up the patient-led Red Lion Group charity in 1994. It takes its name from St Mark's emblem of a red winged lion.
Today, the RLG is the largest pouch support group outside the United States, with members from all over the world and a Facebook group of more than 2,000 members.
David added: “We work closely with the clinical staff at St Mark's, who keep us well informed and validate our public statements and materials to ensure they are consistent with the latest medical practice.
"For example, they are helping us to create a A-Z guide to pouch care for GPs so they can better support people in the community. “It is important people realise they aren't alone. There is a community of 'pouchees' out there with shared experience that they can talk to.”