Stories

25th anniversary special – from the first chairman of…

The first chair of the Red Lion Group reflects on the heady days that marked the launch of the Red Lion Group on 10 April 1994

I remember well my time in St Mark’s Hospital in City Road. I was very ill with a severe case of ulcerative colitis that had not responded to medication. I was admitted to the very old and rather shabby St Mark’s in London’s City Road in a very weak state to be treated with intravenous steroids and methotrexate. After some weeks I was advised to have surgery and offered a pouch operation by my surgeon Mr Peter Hawley.

I was warned of all the possible complications but I was so ill that I didn’t take any time to decide on surgery as soon as possible. All went well and, by day two, I was feeling so much better but very weak. Over the next two years I was readmitted to St Mark’s on numerous occasions because of obstructions due to adhesions requiring a number of major surgeries to combat the problem. This all happened over 30 years ago and now seems just like a bad dream.

Twenty-five years ago I was contacted by the St Mark’s stoma nurse specialist Celia Myers to see if I was interested in discussing ways in which we could help pouch patients and those considering pouch surgery. The group met in the then new St Mark’s Hospital in Watford Road, Harrow.

Celia’s name should go down in history as she was the inspiration that caused the group to come into existence. Tim Rogers, Roar’s designer, was there too. The names of the other founder-members are recorded elsewhere.

We were told that we needed a chairman to run the meetings and perform certain tasks and duties. No one seemed keen to take on this job so I volunteered.

I was chairman of a number of charity groups and medical conference organisers so I thought that one more job could be fitted in somehow. We decided to call the new charity The Red Lion Group and chose the cute little lion as our logo as we felt that it was non-threatening to new members.

After about two years the group had an established membership, a newsletter run by the same team as it is now, and we were a registered charity. At this point I felt that it was time for me to pass on the chair to new blood.

I have always maintained an interest in the group and receive Roar! regularly. I believe the group does a wonderful job because I have always maintained that no matter how experienced a pouch nurse or consultant may be only someone with a pouch can really understand what it feels like to have a pouch with all its peculiarities of sound and motion!

I know that when I was faced with the choice I would have loved to have someone to talk to who had been there, done it and got the T-shirt.

I am very lucky to have a pouch which behaves itself almost all the time. I have lived in Spain permanently for 20 years now and can eat anything and what’s more do. I have been admitted to hospital once here for an obstruction and was delighted to find that the surgeon in charge had been trained at St Mark’s by Peter Hawley and knew all about pouches.

I am looking forward with great anticipation to the April 2019 Information Day and the 25^thanniversary of The Red Lion Group. I hope to see lots of you there and swap pouch stories.

World champion fitness model swaps stoma-bag for J-pouch

Body image is the most compelling reason why most of us opt to have an ileal pouch. So someone who not only chooses to have an ileostomy but is brave enough to flaunt her stoma-bag in front of hundreds of people as a world champion bodybuilder is truly unique.

After several painful spells of ulcerative colitis, Falmouth-based Zoey Wright had an ileostomy and then took up bodybuilding to improve her fitness and to help regain her strength. Then in November 2017 the 26-year-old was crowned Overall World Champion Bodybuilder in the Pro Elite bodybuilding championships in the UK.

“I chose to step on stage, despite my stoma-bag, to prove to myself and others that the impossible is possible and ever since it’s been my mission to face new challenges and defeat the odds,” said Zoey who since winning her title has become the face of USN, the leading sports nutrition brand.

“When I saw my surgeon after the ileostomy he asked if I wanted to have a J-pouch fitted and I said I am fine –  I’m actually enjoying my life with a stoma-bag and it has caused me no issues whatsoever,” she said.

However after winning her world title, Zoey started having problems in her pelvic area “so I spoke to my surgeon and said I had changed my mind about having J-pouch surgery,” she said.

The Cornish athlete is now due to have the first stage of her two-stage J-pouch operation at the Royal Cornwall Hospital, Truro, in the next few months.