An initial announcement that the Red Lion Group Information Day and AGM, 2019, will take place on Saturday 27 April at St Mark’s Hospital, Harrow. This will be another action-packed day catching up on the latest topics of interest to pouchees, potential pouchees and relatives and friends of pouchees! All welcome but numbers will be limited. Please keep the date free! More information will follow as the agenda firms up.
A research team of doctors at St Mark’s Hospital want to speak to people who have had a colectomy and ileoanal pouch due to their inflammatory bowel disease. They particularly want to speak to people who chose to have this surgery due to the finding of changes in the colon lining (called dysplasia). They want to learn how to better communicate and support patients through the process of deciding whether or not to have a colectomy and pouch for this condition. They can only do this if they hear directly from people who have experienced this and can tell them their stories and what worked or didn’t when speaking to their doctors. If you are interested in taking part then please do read the information via this weblink.
or you can email email@example.com for more information.
The Kangaroo Club – a pouch support group based in Oxford – is holding its next annual Information Day on Saturday 6th October 2018.
Cost: Free of charge
Time: 10:00 a.m. – 4:00 p.m.
The aim of the Kangaroo Club Information Days is to give a chance to meet other people who have had colorectal surgery or who are eligible for such surgery. As well as time being given for informal discussion with other attendees, there is a full programme of more formal sessions led by medical staff from the Oxford Radcliffe Hospitals NHS Trust .
The Information Day on 6th October 2018 will include a full programme of sessions covering:
- Colorectal surgery as a specialty
- Pouch surgery: developments and variations
- What is normal?
- About Occtopus and The Kingston Trust
- Round table discussions – as suggested by pouch owners and for their supporters
- Questions and answers with the Colorectal Nursing team
For more information and to register to attend please click here
We look forward to seeing you there.
Revolutionary pouch report puts St Mark’s Hospital top of the league
Here are some key findings about pouches and pouchcare from the frontline – i.e the UK’s and Europe’s leading surgeons and specialist bowel centres.
(You can download the full report from the image on the left).
St Mark’s Hospital carries out more pouch operations than any other hospital in the UK and Europe – with Universitair Ziekenhuis Leuven in Brussels second, Edinburgh’s Western General Hospital third and the Churchill Hospital, Oxford fourth.
These are the findings of a recent survey, the Ileoanal Pouch Report 2017, published in July 2017 by the Association of Coloprotoctology of Great Britain and Ireland (ACPGBI).
The report covers the outcomes of more than 5,000 patients including 500 under-20s who have had pouch operations under the care of approximately 150 surgeons.
Among the report’s most significant findings are:
- Someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD) – every 30 minutes;
- At least 300,000 people in the UK have IBD in one form or another;
- About one-in-four people with UC will need an operation at some time during their lives, with pouch surgery being one of the most common procedures;
- The most popular type of pouch is the J-pouch, while the once-popular S-pouch and W-pouch have largely been phased out;
- Approximately one-third of today’s pouch operations are carried out laparoscopically – i.e with keyhole surgery;
- Most patients spend 10 days in hospital when they have a pouch operation. However, a surprisingly high 27.4% of patients need to be re-admitted within 30 days of their operation:
- Approximately 80% of pouch operations are successful and restore patients to a high quality of life;
- St Mark’s Hospital has carried out 159 operations in the past five years.
The report which was first published in 2012 makes the following key conclusions:
“There is clearly a compelling argument for centralisation of pouch surgery. The procedure is performed infrequently within a repertoire of surgical options available to patients having had a colectomy or needing proctocolectomy.”
“Intimate knowledge of all surgical options, considered experience in guiding patients to the option that may best suit them, and back-up from the specialised multi-disciplinary team is paramount in providing the best possible service for patients.”
“While there are undoubtedly some centres that are currently offering pouch surgery at low volume with good outcomes, this report indicates that they are probably the exception rather than the norm. And the future is likely to take a more pragmatic view when it comes to ensuring good outcomes and training the next generation of specialist surgeons.”
Like the first Ileoanal Pouch Report in 2012, the 2017 version is based on the latest data from the SWORD HES database and the Pouch Registry, a leading database set up by St Mark’s Hospital’s Emeritus Consultant Surgeon and Red Lion Patron Professor John Nicholls in 2015. The data is sourced from voluntary information supplied by half of the UK’s and Europe’s specialist bowel surgeons. surgeons.
You can download the full report from the Resource section of the Red Lion Group Web site.
Click here to Download.
This article appeared in ROAR! Issue 54: Christmas 2017.
You may have noticed that the discussion forum has been dropped from our new web site. This is because we have decided that in this age of social media, Twitter is a more appropriate platform. So going forward, our new Twitter account RedLionPouchSupport (@PouchRed) will be the new way to interact with the Red Lion Group and other Pouchee’s and people with an interest in the subject.
So please Tweet your questions or comments to @PouchRed.
We hope that in time, that RedLionPouchSupport will evolve into the leading discussion forum for informed discussion about Pouch’s and Pouch related topics.
The 2018 Information Day took place on Saturday 12 May 2018 at the St. Mark’s Hospital in Harrow.
We were delighted to welcome over 80 attendees including pouchees, potential pouchees and medical specialists
2018 marks the 40th anniversary of the invention of the Pouch at St. Mark’s hospital and we were delighted to have Professor John Nicholls one of the pioneers and foremost experts on the subject as keynote speaker giving his personal reflections on 40 years of the pouch operation.
David Davies with Stephen Want, RLG member, who gave a talk about his experience as one of the earliest recipients of the pouch
David Davies with Lisa Allison after her presentation on the subject “Pouch Surgery Complications“. Lisa is a Pouch nurse specialist at St. Mark’s hospital and former Chair of the Red Lion Group.
David Davies with Dr Jonathan Segal of St. Mark’s hospital, after his presentation “Pouch Research Update – medical & surgical perspectives” .
David Davies with Mr Janindra Warusavitarne of St. Mark’s hospital, after his presentation on the subject “Modern developments in Pouch Surgery“.
David Davies with Miss Sam Evans after her presentation of “Fertility, fecundity and pregnancy with a pouch“. Sam is a Clinical Nurse specialist in pouch care at St Mark’s hospital.
There were also a number of work shops and of course food & beverage.
You can find recordings of the presentations from this years event here on the RLG web site.
We look forward to seeing you all again next year!