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DD and Bev’s Choppertastic canal ride for RLG

DD and Bev’s Choppertastic Leeds-Liverpool canal ride for RLG

Our charity now has an account with Just Giving to facilitate fund raising via on-line donations to provide much-needed funds to improve our services and support to people with pelvic pouches in the UK.  Up until recently the Just Giving service was out of the reach of small charities such as RLG, but recent industry changes mean Just Giving have been forced to provide their services for free.  Hence our registration! So if you have any burning ambitions creeping around the bottom of your bucket list or indeed just a passion to raise money for RLG then we would warmly welcome your support with a fundraising initiative.  Please don’t feel that it has to be something immense. Recent examples I have seen for charity fundraising have including simple things like “Guess the number of Easter eggs in the jar”, a sweep on the Grand National and a sweep on the winner of the Six Nations rugby competition.  Let us know what you want to do and we will provide all the support to get you started.

As a starter, my partner Bev and I will be cycling the 127 miles of the Leeds-Liverpool canal on 22nd and 23rd June and your support will be greatly appreciated through donation to help us during the bleak moments.  As you know, RLG is entirely run by volunteers and with no overheads, so every single penny you donate will go to this worthy cause. You can donate at

Donate

David Davies
Red Lion Group Chairman

 

You can visit the Red Lion Group Just Giving Page, or start your own fund raising for the Red Lion group using the buttons below.

 

 

Date announced for 2020 Information Day!

An initial announcement that the Red Lion Group Information Day and AGM, 2020, will take place on Saturday 25 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 record number of attendees at 25th anniversary 2019 Information day at St. Mark’s Hospital.

They came, they saw, and heard all about living…

They came they saw, and heard all about living with a j-Pouch….and ate some cake as well!

Twenty-five years young and who better to celebrate such an epoch-making event than the first chairman Dr Martin Peters who flew back to the UK from Spain and even postponed his own wedding anniversary to launch this year’s Silver Red Lion Group Information Day.

Dr Martin Peters, the first chairman of the Red Lion Group

Epoch-making, age-defying – all descriptions apply – this turned out to be the largest and best-attended Day in the group’s history with more than 80 Red Lion members, relatives and healthcare professionals meeting and mingling at St Mark’s Hospital’s Himsworth Hall on 27 April this year.

At least five RLG founder-members joined the celebrations and both Dr Peters and founder-member Tim Rogers, the first editor of Roar!, gave rallying speeches and assured us that the new days are just as good as the old – if not better! And the stats bear this out, with a growing membership, a greater reach in the UK and overseas and a flourishing new website.

Every Information Day celebrates progress and change in recovery, achievement and technology – as reflected in the talks which featured such topics as biofeedback (Ellie Bradshaw, St Mark’s lead biofeedback nurse), Pharmaceutical research (Uchu Meade, St Mark’s pharmacy manager), Diet (Gabriela Poufou, St Mark’s dietitian) and the workings of the ileoanal pouch (Lisa Allison, St Mark’s clinical pouch nurse specialist).

But perhaps there is no better sense of fulfilment than discussing your personal problems and challenges at a workshop, as members found at three animated events for male and female members – and families and friends – which enabled them to speak openly and frankly about their concerns with fellow members.

It was a day to remember –  aptly summed up by one Red Lion member who said: “Even though I have had my pouch for 21 years, I picked up some very useful tips and I loved the opportunity to meet other pouch owners.”

See you at the next one in 2020!

First editor of Roar, Tim Rogers (Left) with current chairman David Davies (Right)
Dr Martin Peters and David Davies cut the 25th anniversary cake

You can download the presentations below.

Pelvic Floor Perfection and the importance of Emptying -Ellie Bradshaw

Download Now!

Pharmacy Advice for Pouch Patients – Uchu Meade

Download Now!

Managing the Ileo Anal Pouch – Lisa Allison

Download Now!

Healthy eating for Patients with an Internal Pouch – Gabriela Poufou

Download Now!

Don’t forget, you can find presentations and/or video recordings from this year’s and previous year’s Information Days on our resources page from the menu bar or by tapping here.

Calling All Fundraisers!

CALLING ALL FUNDRAISERS

 The Red Lion Group is actively seeking enthusiastic individuals to help lead our 2019 fundraising drive.

Raising money for good causes is part of what we do and we have funded research projects into inflammation of the bowel, pouchitis and faecal transplantation among others in our quest to help support new and potential pouchees throughout the UK and Europe.

Fundraising takes many forms such as individual donations – which as a registered charity enables us to claim £2.50 gift aid for every £10 raised – sporting events such as running, cycling and swimathons; sweepstakes with friends and family which are a lively and fun way to raise money – and what could be better than to start with the 2019 Rugby World Cup in Japan!

RLG is working with two major online platforms,  to help you raise money from the comfort of your sofa or amid the razzamatazz of a road cycling event. As you know, the Red Lion Group is run by volunteers and has very few overheads, so almost every penny you raise will be used to help these causes.

Chairman David Davies  will be  doing a cycling event – the Leeds/Liverpool canal over two days in June. It’s 127 miles of reasonably flat terrain, but the kicker is that he and his partner will  be doing it on Raleigh Choppers. These are iconic bikes of the 1970s – you either had one or you didn’t and if you didn’t have one,  you were a complete nobody!

Suddenly it’s springtime again and the green shoots are here!  So why not tell us about your fundraising ideas and events by contacting the RLG chairman David Davies or Roar! editor Chris Browne at info@pouchsupport.org.

We’d really love to hear from you!

 

 

The Internal Pouch – it started with this historic…

The Internal Pouch – it started with this historic paper in 1978

What were you doing in 1978? Here are some clues. John Travolta and Olivia Newton John were on our screens with the hit movie Grease.

Disco fever was still on the dance floors and the Bee Gees were still dominating the charts a year after the smash hit Saturday Night Fever movie.  Kate Bush was WOWing us with her UNBELIEVABLE Wuthering Heights!

James Callaghan was PM. Anna Ford became the first female news reader. Hitch-hikers Guide to the Galaxy was first broadcast on BBC Radio 4,  Nottingham Forest won the Football League First Division title (Managed by Brian Clough),  Liverpool retained the European Cup  with a 1-0 win over Club Brugge.  Freddie Laker was knighted for his services to the aviation industry!

Louise Brown became the world’s first test tube (IVF) baby.

The Government announced plans to replace O level and CSEs.

Viv Anderson the 22 year old Nottingham Forest defender became England’s first black international footballer.

The year ended with the infamous “Winter of Discontent”…..

….But the BIGGEST and MOST IMPORTANT event of the year was the publication in the British Medical Journal of an article by Sir Alan Parks and a young John Nicholls titled “Proctocolectomy without ileostomy for ulcerative colitis“.

The paper described a new procedure which they had pioneered and which we now refer to as an “internal pouch”, “J-Pouch“, “S-Pouch” or “ileal pouch–anal anastomosis (IPAA)” and which has since changed many of our lives. At the time, only a handful of operations had been performed and the paper described the procedure and the outcomes. Now, over 40 years after that publication and many 1000’s of succesful operations later, you have the opportunity to read this historic document below.

Parks Nicholls Paper 1978
Parks Nicholls Paper 1978
Download Now!2048 Downloads

At the Red Lion Group Information Day in 2018, Professor John Nicholls gave a talk  “Personal reflections on  40 years of the Pouch Operation“. You can view a video recording of the talk on the Resources section of this website. See Personal Reflections on 40 years of the Pouch Operation.

Ed Note: I was fortunate to have had my pouch created by John Nicholls in 1987 at the old St. Mark’s hospital in City Road, and 35+ years later it is still going strong! Thank you Professor Nicholls, from a lot us us!

Ed Note: Two Red Lion Group members, Jean Reed and Sylvia Panford were numbers 9 and 10 respectively of pouch recipients, having had their pouches created in 1978 by Sir Alan Parks. They met as patients and have remained friends ever since.  That is, 45 years and counting and their pouch’s still going strong!  They are both regular attendees on our monthly forum.

J-Pouch Information Day at St. Mark’s Hospital

25th Anniversary J-Pouch Information Day at St. Mark’s Hospital

Do you have a j-pouch, s-pouch, w-pouch or considering pouch surgery?  Have you ever attended a Red Lion Group J-Pouch Information day at St. Marks’s hospital? Whether you are a regular or first time attendee – you will be very welcome and I am sure you will find the day interesting and beneficial.

The J-Pouch Information Day on Saturday 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  Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital will be speaking on Modern developments in Pouch Surgery.

Another highlight will be Elissa Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy at St Mark’s Hospital, who will be speaking about the importance of efficient pouch emptying, the mechanics of pouch emptying and how you can empty your pouch more effectively.

Meet and mingle with other pouchees and pre-pouch patients and share your experiences in our interactive work-shops.

The cost is only £8.00 for Red Lion Group members and members’ guests, and £10.00 for non-members. Cost Includes lunch and refreshments.  Full details and registration form below.

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

If you are driving, FREE parking is provided to attendees in the St. Mark’s Hospital car-park (Please request a parking pass on the application form below).

Here is the full Information day agenda (updated 20.03.2019)

TIMEPRESENTATION
10:00-10:30Registration with tea/coffee and biscuits
10:30-10:50Welcome and AGM
10:50-11:00Personal reflections on the Red Lion group 25 years on

Dr. Martin Peters, Pouchee and first Chairman of the RLG

11:00-11:10My parallel journeys – pouch and RLG

Tim Rogers, Founder RLG member, first editor of ROAR!

And still on the committee after all these years!

11:10-11:50Modern developments in Pouch Surgery

Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital

11:50-12:20Pelvic floor perfection and the importance of proper emptying

Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital

12:20-13:30Lunch – a selection of sandwiches and cakes
13:30-14:00Pharmacy Advice for Pouchees

Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist

14:00-14:30Diet and your pouch

Gabriela Poufou, Dietician, St. Mark’s Hospital

14:30-14:45Tea and coffee break
14:45-15:55Personal pouch journeys and workshops

1) Female pouch issues Theresa Parr

2) Male pouch issues Gary Bronziet

3) Pouch family and friends (TBC)

15:55-16:00Evaluation and close

You can download the agenda below.

Information Day Agenda 2019
Download Now!1501 Downloads

If you would like to attend please download the registration form below.  Please complete the form and remit payment as soon as possible to guarantee your place as spaces are limited.

Information Day Registration 2019
Download Now!1809 Downloads

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!

Let us spray, or not as the case may…

Let us spray, or not as the case may be…

How many of you use air fresheners? And if you do, which brands do you prefer? Roar’s team of expert testers give us their feedback – by Roar! editor Christopher Browne.

Please note – the Red Lion group does not endorse any product mentioned in this article.

To spray or not to spray – that is the question. Do you use an air freshener after going to the loo? And if you do, which one do you find works best for you?

For the first few months after I had my pouch fitted, I was not too concerned about its after effects or smell. I lived on my own and the only person who had to face the odours from the lavatory was me. However, it was when I went back to work and started going to social functions again that I sought ways to cope with the pungent after effects.

First, I studied the small print on the main high-street air fresheners and tried a succession of sprays without too much success. Though I found the odours from Neutradol and Febreze were slightly less acrid and medicinal than their rivals. Then I read about a spray that not only counteracts bad smells but also eliminates them. It had the neat-sounding sobriquet –odour-eater. How could I refuse? It was an apparently revolutionary concept in the mid-1990s

The brand name of the product was Airoma, aptly enough. After ordering one from the internet, I found I could order batches of three or more from eBay. They ranged from citrus and herbal fern fragrances to mango and cool –which didn’t really smell of anything and probably wasn’t meant to! After a few weeks I found the mango freshener gave off the most subtle and soothing fragrance. I continued to use it for work and play for several years and found the once murmured reactions of my friends and colleagues ceased.

I still use it, although very occasionally. As a catheter user I find I have less frequency and rarely leave more than a faint whiff in the corridors of power! If you’re a catheter user, please let me know if this applies to you too!

But enough of me for now, here are the Thoughts of Chairman Davies. “It wasn’t until I started to think about an answer to the question whether to use a spray or not that I realised how much this issue pervades my sub-conscious and drives my behaviours,”David says. “Sprays have never worked for me. If I’m in a busy public toilet then I’ll sometimes apologise with a smile to the person using the cubicle after me. They always say ‘that’s ok’or similar with a smile back and I wonder what they really think when they get inside!

“At my partner’s house we tried a few products, but they masked the bad smells with very powerful, nauseatingly sweet and synthetic smells. There are odour-free deodorisers on the market, but they didn’t do much of a job. So, we ended up with scented candles that I light (if I remember) when I’m using the toilet. The candles preferentially burn the volatiles in the air and let off a more subtle smell than the sprays,”says David.

Chairman Davies has another anti-odour technique. He has his own personal cubicle at home. “I have a convenient out-of-the-way en suite, which is my toilet of choice and is private,”he says. An eminently good idea for a family man or woman, I would have thought.But what do you do when visiting friends or going to parties?  “At other people’s houses I’ll try and locate a remote toilet rather than using the one the rest of the dinner party guests are using,”says David.

Recently a group of leading manufacturers have been endorsing products called ‘essential oil sprays’. RLG’s membership secretary Susan Burrows and several other members of the Red Lion Group use a brand called Poo-Pourri.

“I bought it on the internet at www.poopourri.co.uk. I don’t know why it works but it does. They market it as ’This before-you-go blend of natural essential oils creates a barrier to embarrassing bathroom odour.’ And the manufacturer has quite jokey instructions: ‘Spritz the bowl before you go and no one else will ever know.’,” says Susan, adding: “The spray comes from the US and this one is only available online but there are others on sale over here.

Sense of humour warning – Only watch video if you have a twisted sense of humour like me! (Ed.)

Another RLG committee member commented: “At home I don’t tend to use a spray but if we have guests, I use Poo-Pourri before I go. It is so much more effective than standard air fresheners and leaves the bathroom with a lovely lemon grass smell.”

Essential oils don’t necessarily appeal to everyone, however. Chairman Davies slightly poo-pooed the idea when he said: “They supposedly work by creating a film on the toilet water that prevents smells being released. That makes no scientific sense to me and nor does it cure the problem if you pebbledash the bowl.”

“At the end of the day all my friends and family know about my op, so I expect them to get on with it and generally they do. There is the usual mickey-taking when it comes to who is going to room with me on cycling weekends away with the lads,”he adds. I know what he means. I’ve had the same experience on a couple of overseas trips too!

Others find there is no substitute for good, old-fashioned common-sense. RLG committee member Peter White relies on fresh air to help clear away any lingering odours. “At home I tend to leave the window ajar for a few minutes with the door to the rest of the house closed. Many modern fittings allow ‘closed’windows to be slightly ajar, so allowing them to operate like a supersized trickle vent,”adds Peter.


If you found this article interesting, why not consider attending our Information day to be held at St. Mark’s hospital on Saturday 27th April 2019, where you will have the opportunity to listen to experts in the field of pouch surgery, pouch research and development and pouch care, and share your experiences with other pouchees.

Here is the Information day agenda (updated 20.03.2019)

You can download the agenda below.

Information Day Agenda 2019
Download Now!1501 Downloads

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.

Information Day Registration 2019
Download Now!1809 Downloads

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!

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 27th April 2019 at
St. Mark’s Hospital, Watford Road, Harrow, Middlesex HA1 3UJ.
See Getting here

Here is the Information day agenda (updated 20.03.2019)

TIMEPRESENTATION
10:00-10:30Registration with tea/coffee and biscuits
10:30-10:50Welcome and AGM
10:50-11:00Personal reflections on the Red Lion group 25 years on

Dr. Martin Peters, Pouchee and first Chairman of the RLG

11:00-11:10My parallel journeys – pouch and RLG

Tim Rogers, Founder RLG member, first editor of ROAR!

And still on the committee after all these years!

11:10-11:50Modern developments in Pouch Surgery

Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital

11:50-12:20Pelvic floor perfection and the importance of proper emptying

Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital

12:20-13:30Lunch – a selection of sandwiches and cakes
13:30-14:00Pharmacy Advice for Pouchees

Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist

14:00-14:30Diet and your pouch

Gabriela Poufou, Dietician, St. Mark’s Hospital

14:30-14:45Tea and coffee break
14:45-15:55Personal pouch journeys and workshops

1) Female pouch issues Theresa Parr

2) Male pouch issues Gary Bronziet

3) Pouch family and friends (TBC)

15:55-16:00Evaluation and close

You can download the agenda below.

Information Day Agenda 2019
Download Now!1501 Downloads

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.

Information Day Registration 2019
Download Now!1809 Downloads

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!

Ancient ROAR archives discovered!

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 ancient ROAR archives 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.
Register Now

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