News From the archives – the launch of the Red Lion Group
We have decided to delve back into our ROAR! archives and share some of the articles with you – and in the year in which we celebrate the 30th anniversary of the Red Lion Group, what better place to start than ROAR! Issue #1 announcing the launch of the Red Lion Group on Sunday 10th April 1994.
Here is an excerpt from the article that featured in that issue.
The Launch of the Red Lion Group
This is the first newsletter of the Red Lion Group which is a support group for people who have a pouch or are considering having a pouch operation. The group was started by people who had their pouch operation at St. Mark’s Hospital, London but anyone is welcome to get involved. In this first article Tim Rogers recounts the launch of the group on Sunday 10 April 1994.
I went up to Aintree this year to see the Grand National. I lost about £20, but I didn’t mind because the following day Rachel Nicholson Abedi and I chaired the first ever meeting of the Red Lion Group. The group is largely made up of past patients of St. Mark’s Hospital in London who have made the transition from ileostomy to pouch.
A pouch is constructed by stitching the end of the small intestine in such a way as to give holding capacity, and plumbing it through to the anus. The operation is suitable for people who have suffered from ulcerative colitis and is a direct replacement for an ileostomy. While having an ileostomy takes some getting used to, it does allow people to be free from the chains of inflammatory bowel disease. Gone forever are the days of ill-health, urgency and planning your life around lavatories.
Patients undergoing a pouch operation lose the bag, but all the old fears about incontinence return. It was partly for this reason that we formed the Red Lion Group: to help people to decide whether a pouch is for them, and to give support to people who already have a pouch. A small band of us had been meeting once a month or so on a Thursday afternoon to plan the launch of the Red Lion Group.
When the big day arrived we did not know quite what to expect. Dansac kindly sponsored the event by laying on the venue in the beautiful grounds of Syon Park in southwest London and Mr. John Nicholls, one of the surgeons who pioneered the procedure, agreed to give a talk about the history of the pouch operation.
As Rachel and I sat nervously at the front of the conference room we counted that almost 100 people had turned up. Rachel stood up and spoke about the origins of the group which was the brainchild of her and the stoma-care nurse at St. Mark’s Hospital Celia Myers. Then I spoke briefly about the events that had led to this first full meeting before introducing Mr. Nicholls.
Mr. Nicholls’ talk was entertaining and informative. We were told that ulcerative colitis drives people to surgery in many ways. Some need it because the urgency ruins their lives. Others find that their health gets eaten away and they lack the energy and vitality to do things that everyone else takes for granted. By having an ileostomy people’s health is restored and they can go out and about safe in the knowledge that they are not suddenly going to have to go any moment.
People have a pouch operation for purely cosmetic reasons and so it is crucially important that people only undergo the procedure if they really want it. The operation is not suitable for sufferers of Crohn’s Disease. The operation has evolved over the years thanks to the genius of some gifted surgeons to arrive at today’s state-of-the-art ‘W’ pouch.
There was an animated question and answer session after Mr. Nicholls’ talk. The question of cancer-risk in pouch patients was raised. Mr. Nicholls said that although there had only ever been one case of instability of the pouch lining which could possibly lead to cancer he insists that each of his patients undergo a biopsy every year. Not all surgeons follow this example and this was perhaps the biggest talking point of the day.
The question of conception, pregnancy and birth came up. Mr. Nicholls recommended that women with pouches give birth by Caesarean section to minimise any damage to the bowel, but there is absolutely no reason why people with pouches should not have children. Indeed it turned out that there were three or four mothers with pouches at the meeting.
The problems of uveitis (an eye disorder) and arthritis linked to ulcerative colitis were also discussed. Some patients had been led to believe that a pouch would cure them of these disorders. Mr. Nicholls said that the link between ulcerative colitis and uveitis and arthritis were still obscure but progress was being made, as it was in the search for the origins of ulcerative colitis itself. He told one questioner that there was every chance that by the time her son grew up ulcerative colitis may possibly have been eradicated through genetic engineering.
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To continue reading this opening article and the rest of issue #1 of ROAR! you can download the entire issue below.
This year we will be celebrating the 30th anniversary of the founding of the Red Lion Group and we would like to express our gratitude to the founders of the group which continues to flourish. Tim Rogers only recently stood down from the committee and I am delighted to say that Prof. John Nicholls is still a patron.
ROAR! is the magazine of the Red Lion Group that is published two or three times a year. If you are a member of the Red Lion Group, you will have online access to ALL issues of ROAR! going back to issue #1 which was published in 1994. If you would like to find out about membership of the Red Lion Group please go to pouchsupport.org/join/
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