News Archives - Pouch support charity

Everything you wanted to know about your internal pouch….

Everything you wanted to know about your internal pouch but were afraid to ask

Are you aware of the wealth of information available on the Red Lion Group website about Pouch history and living with a Pouch?

Over the years, we have posted personal stories from pouch owners and video recordings from the experts and pioneers in pouch surgery from St. Mark’s Hospital and academic institute.

You can find this information on our Stories page. Or look at the Resources page and browse recordings of Information Days presentations.

Some highlights from previous Information Days:-

Personal reflections on 40 Years of Pouch Surgery by Professor R. J (John) Nicholls
Modern developments in Pouch Surgery by Janindra Warusavitarne
Fertility, fecundity and pregnancy with a pouch by Sam Evans – Pouch Nurse Specialist
Pouch emptying and Biofeedback by Ellie Bradshaw – Lead Nurse, Biofeedback Dept.

So, whether you have a j-pouch, s-pouch, w-pouch or considering pouch surgery, why not attend this year’s Information day and hear expert advice first hand on pouch related topics and meet other pouch owners and pre-pouch patients. This year we will be commemorating the 25th anniversary of the Red Lion group.

The 25th anniversary Information day will take place on Saturday 27^thApril 2019 at
St. Mark’s Hospital, Watford Road, Harrow, Middlesex HA1 3UJ.
See Getting here

Here is the Information day agenda

TIME	PRESENTATION
10:00-10.30	Registration with tea/coffee and biscuits
10.30-10.50	Welcome and AGM
10.50-11.00	Personal reflections on the Red Lion group 25 years on Dr. Martin Peters, Pouchee and first Chairman of the RLG
11.00-11.10	My parallel journeys – pouch and RLG Tim Rogers, Founder RLG member, first editor of ROAR! And still on the committee after all these years!
11.10-11.40	Modern developments in Pouch Surgery Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital
11.40-12.10	Pelvic floor perfection and the importance of proper emptying Ellie Bradshaw, Lead Nurse, Biofeedback Dept.
12.10-13.15	Lunch – a selection of sandwiches and cakes
13.15-13.45	Long term medical issues with a pouch/UC Dr Jonathan Segal – Medical Research Fellow
13.45-14.15	Diet and your pouch Gabriela Poufou, Dietician, St. Mark’s
14.15-14.45	Tea and coffee break
14.45-15.55	Personal pouch journeys and workshops 1) Female pouch issues Theresa Parr 2) Male pouch issues Chris Browne 3) Pouch family and friends Gill White
15.55-16.00	Evaluation and close

You can download the agenda below.

Info Day Agenda 2019

Download Now!

If you would like to attend please download the registration form below. Note that the cost is only £8.00 for members and member’s guests and £10.00 for non-members (cost includes lunch and refreshments). Please complete the form and remit payment as soon as possible to guarantee your place as spaces are limited. If you have pre-registered, please send form and remit payment by 1 April to guarantee your place.

Info Day 2019 Registration

Download Now!

If you are not already a member, why not join now and take advantage of the discounted rate and other member benefits. You can join here.

Join Now

We look forward to seeing you there. Come celebrate our 25th anniversary with us!

Treasurer required – Join the Red Lion Group committee!

Would you like to help run the Red Lion Group by joining the committee? We’re a friendly bunch of people and, naturally, have a common cause – to listen to, advise and help those of us who have ileoanal pouches. We also help organise events such as annual Information Days and raise money for gastro research projects.

The committee member we are looking for would look after the smooth running of the finances and make sure the books are balanced at the end of the year. As treasurer, you would also be involved in four teleconference calls and a face-to-face meeting every year.

If you’ve a few hours to spare and would like to help your fellow pouchees or else know someone who does please contact David Davies, the chairman, at dbd60@hotmail.com or Peter White, the acting treasurer, at p_terwhite@yahoo.co.uk.

Ancient ROAR archives discovered!

The eagled eyed may have noticed that there was a gap in the ROAR archives, specifically issues 5- 12 inclusive. Thanks to intrepid explorer Peter Zammit, these have been found and uploaded to the website. So we now have the complete set of ROAR! online, going all the way back to Issue 1: Summer 1994.

There are some fascinating and informative articles in these old editions and I highly recommend that you make some time to re-visit them, or maybe see them for the first time. The ROAR archives are accessible to members and non-members alike.

Celebrate the Red Lion Group Silver Jubilee at 2019…

2019 is the SILVER JUBILEE of the Red Lion Group; providing advice and guidance for pouch patients, their friends and family for a quarter of a century.

The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994. Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.

Book your place by clicking the button below.

Information Day 2019 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2019, which will take place on Saturday 27 April at St Mark’s Hospital, Harrow. The Red Lion Group Information Day is one of the most informative events for patients, prospective patients, friends family and health care professionals with an interest in Pouch Surgery.

You will have the opportunity to hear from some of the leading professionals in the field of Pouch Surgery practise and research and interact with fellow pouchees, prospective pouchees and health care professionals. You can view videos from previous information days here on the Red Lion Group website.

Spaces are limited and you are recommended to register your intention to attend as soon as possible. Attendance fee (which includes refreshments and lunch) is £10.00 for non-members and £8.00 for members.

You can book your place by subscribing to the Information Day mailing list by clicking the link below.

You will be sent regular updates on the agenda as they become available and payment instructions in due course.

Confirmed Speakers

The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994. Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.

We are delighted to confirm that Elissa Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy at St Marks Hospital, will be speaking about the importance of efficient pouch emptying, the mechanics of pouch emptying and how you can empty your pouch more effectively.

Biofeedback therapy is an effective treatment for bowel dysfunction. The service at the Sir Alan Parks Physiology and Neuromodulation Unit has been successful in providing biofeedback therapy for 30 years, where treatments have extended and evolved to help both the physical and psychological needs of pouch patients. It is particularly useful for pouch patients, who may experience a variety of difficult symptoms including increased bowel frequency, evacuatory dysfunction and incontinence.

You can read more about Bio Feedback research at St Marks Hospital here.

Christmas 2018 edition of ROAR! now available

The Red Lion Group publishes an informative magazine called ROAR! two or three times a year and the latest edition has just been published.

Members should have received this (Issue 56: Christmas 2018) in the post.

It is also available to download from the website.

Only members have access to the latest edition on the website. Please contact us to request the password if you don’t have it.

Non members are welcome to view the archive editions on the website going all the way back to 1994.

Visit the Red Lion Group website at www.pouchsupport.org.

Date announced for 2019 Information Day

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.

Chairman David Davies presents gift to speaker Prof. John Nicholls at the 2018 Information day.

Decision-Making in IBD Dysplasia Questionnaire

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 misha.kabir1@nhs.net for more information.

Kangaroo Club – Information Day

The Kangaroo Club – a pouch support group based in Oxford – is holding its next annual Information Day on Saturday 6^th October 2018.

Cost: Free of charge

Time: 10:00 a.m. – 4:00 p.m.

Venue: John Radcliffe Hospital, Oxford

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 6^th 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.

Ileoanal Pouch Report 2017

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.