Register now for next Pouch Open Forum on 5…

Re–Published on 13 September 2020

Registration is now open for our next Open Zoom Forum on Monday 5 October at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after last meeting –

“Thank you – I did enjoy the session. I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 5 October at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 5 October 2020).

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 August 2020 – David Davies Chairman Red Lion Group

The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm. Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues. One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.

Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:

How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
- Use of a catheter to achieve complete emptying before bed
- Medications and their use to prevent/reduce nightime BMs. Windeeze was one suggestion to reduce gas in the pouch
- Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time.
Diet and the best diets to use to achieve weight loss along with a healthy pouch
- The benefits of the MacDonalds diet for pouchees!
The St Marks pouch nurses and how to contact them
Probiotics and the high cost of VSL#3. Many people use probiotics and feel they help keep their pouches healthy. Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community. However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website.
It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!

Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons. And thank you to all who took time out to join the event and contribute to the lively discussions.

You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.

Published on 5 July 2020.

First Red Lion Group Zoom Forum “a great success”!

The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions. So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past. The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members. The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics. The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.

Representative screen image of Zoom meeting

The event was a resounding success. Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.

Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.

We pouchees are united by a common journey and shared experiences which are unique to our circumstance. There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs. The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.

The event was a great success with attendees unanimously voting for another such event in one month time. The next forum will take place during the evening of Monday 3^rd August, starting at 8pm. To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.

Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event.

David Davies

Chairman – Red Lion Group

We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.

Zoom into Summer series of Pouch webcasts

Updated Sunday 21 June 2020

Professor John Nicholls discussing the history and evolution of the Internal Pouch procedure.

This week’s Red Lion Group Zoom meeting featured the eminent surgeon, Professor John Nicholls, who spoke about the history and evolution of the different surgical procedures for the treatment of bowel diseases, including the pouch procedure of which he was, with Sir Alan Parks, the first surgeon to describe and carry out the procedure. This was a fascinating talk, especially as so many attending the talk have Professor Nicholls to thank for their own pouch! You can view the recording of the talk by clicking on the picture above.

This was the last session in the Zoom into Summer schedule to feature a guest speaker, however as mentioned at the meeting by Red Lion Group chairman, David Davies, we intend to hold further Zoom meetings in the format of an informal “coffee morning” chat, like the open forums we usually hold at the end of our annual Information Days. The first one is provisionally scheduled for Thursday 2 July at 10:30 am. Further details to follow!

Thanks to everyone that has supported our Zoom events and sent such positive feedback, and special thanks to all of our speakers. We have had over 100 people that have taken part, and look forward to seeing you on our first coffee morning meeting!

Updated Sunday 14 June 2020

Zoom into Summer with Zarah Perry-Woodford – Living with a Pouch

This week 48 of us had the pleasure of listening to Zarah Perry-Woodford, followed by a vibrant question and answer session covering a variety of Pouch related issues. If you missed the session, you can see a replay by clicking on the picture of Zarah above.

Next Thursday you will have the opportunity of hearing from Prof. John Nicholls who, with Sir Alan Parks more than 40 years ago, pioneered the procedure we know now as the Internal Pouch or IPAA. We look forward to hearing his personal reflection on 40 years of the pouch procedure on Thursday 18 June at 10:30 am.

Please don’t forget to register to receive the Zoom meeting Link. You can register by tapping the button below. Note that this zoom meeting will be immediately followed by the AGM (Annual General Meeting) of the Red Lion Group, and Red Lion Group members are invited/encouraged to remain on the Zoom for the AGM. We promise it will be short and sweet and further information about the AGM will be sent out seperately to members.

Note the main presentation from Prof. Nicholls is open to all, not just RLG members!

Updated Tuesday 9 June 2020

Links to the recordings from the first three Zoom into Summer sessions are now available. Click on the pictures below to view the recordings of Dr. Yoram Inspector, Janindra Warusavitarne and Jason Bacon respectively.

Don’t forget to register for this week’s Zoom featuring Zarah Perry-Woodford if you have not already done so!

Updated Sunday 7 June 2020

Dr. Yoram Inspector – the link between the Brain and the Gut

Another “lockdown ” week gone by, and another fascinating Red Lion Group Zoom meeting, this week featuring Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Yoram shared his unique perspective on the link between the brain and the gut, with a good measure of Greek Classics and Mythology thrown in! Make sure to look out for the recording if you missed it.

It’s not too late to register for the Zoom meeting this coming Thursday 11 June (10:30 – 11:30) where this weeks guest speaker will be Zarah Perry-Woodford. Zarah has a CV that reads like a medical Who’s Who. A pioneer in patient care and support, Zarah is the Consultant Nurse at St Mark’s Hospital, the UK’s centre of excellence for pouch and stoma care. Zarah speaks and presents at national and international conferences, writes for the leading medical and nursing journals and in 2016 wrote the definitive “Ileo-Anal Pouch Surgery for Ulcerative Colitis – a Guide for Patients” – a work that has become the go-to bible for those who have had or are about to have pouch surgery. She was also a very active medical liaison officer with the Red Lion Group.

After spending several years developing and expanding the ileo-anal pouch service at St Mark’s Hospital, Zarah is now a key member of the team working on the NHS-sponsored “Ostomate Project”, which aims to expand and develop stomacare services and products throughout the UK.

You must register to receive the Zoom meeting Invitation.

Scroll down for further information about upcoming meetings.

Updated Sunday 31 May 2020

Janindra Warusavitarne – Innovation in Pouch Surgery

Thursday we had another enjoyable and enlightening Zoom meeting with over 40 attendees, watching and listening to Janindra Warusavitarne. His talk was followed by a lively Q&A session. Janindra was also complimented on having the best book shelf seen on Zoom so far!

If you attended you will also have heard about the further exciting speakers lined up for future sessions. On Thursday June 11, we have the pleasure of hearing from Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital. Many of you will know Zarah from personal experience, and as you will know, Zarah literally wrote the book on “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“. You can see further details about Zarah and her book in a previous post here.

Hot off the press news is that our speaker on Thursday 18 June will be none other than Professor John Nicholls. As many of you will know, Prof. Nicholls (with Sir Alan Parks) pioneered the surgical procedure we know as the Internal Pouch or IPAA. (see recent post on their historical paper describing the procedure here ).

And don’t forget to register to attend this weeks ZOOM (Thursday 4 June) where the speaker will be Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology. His last talk at a Red Lion Group Information day, was rated the most popular by attendees with his fascinating insights into the link between the brain and the gut.

For further information, and to register please scroll down.

Updated Saturday 23 May 2020

Jason Bacon – CEO of St. Mark’s Hospital Foundation

This past Thursday, we held the first of our series of Zoom into Summer webinars and a good time was had by all. Jason Bacon, CEO of St. Mark’s Hospital Foundation gave a very interesting talk on how St. Mark’s Hospital has adapted in the light of the COVID-19 virus. A recording of the talk will soon be available on line.

Further to last weeks update, I can now confirm that the talk by Dr. Yoram Inspector will be on Thursday, 4 June (10:30 – 11:30). Anyone that has attended one of his talks will know that he is one of our most popular Information Day presenters. Dr. Inspector is a Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology.

It’s not too late to register for the Zoom meeting this coming Thursday 28 May (10:30 – 11:30) where this weeks guest speaker will be Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital. Janindra has a particular interest in minimally invasive surgical techniques and is at the forefront of developments in Pouch Surgery.

Details of how to register are below. So come on fellow pouchees and guests! Bring your morning cuppa, and join us for elevenses with an interesting talk with time for Q&A and discussion.

We are delighted to announce that we will be hosting a series of Pouch related webinars (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike. As you may know, regrettably we had to postpone the RLG annual Information Day usually held at St. Mark’s Hospital, but here is a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

The following online meetings are currently scheduled (more to follow) :-

Thursday 21 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Jason Bacon (CEO of St. Mark’s Hospital Foundation)

Thursday 28 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Thursday 4 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital.

Thursday 11 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital

Prof. Nicholls receiving gift from Chairman David Davies after speaking at Information Day 2017

Thursday 18 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Prof. John Nicholls – The Rear Admiral (retired)

If you would like to attend any session, please register your name and email address by clicking the button below. Please indicate the session(s) you would like to attend. You will be sent joining instructions in due course.

Zoom is FREE and extremely easy to use, and you can join with the press of a button from a desktop computer, laptop, tablet or smart phone. There are no costs to you in joining the webinar.

We look forward to hearing from you soon and receiving your registrations!

Notification of AGM

Dear RLG member,

We are living in strange times and I speak for all the Trustees in hoping that you and your loved ones have been keeping well during the COVID-19 crisis.

The crisis has meant the cancellation of our annual Information Day, which would have taken place in April and would have included the Annual General Meeting (AGM). In place of the Information Day, we have been running a series of webcasts using the Zoom facility allowing members to dial into the sessions from the comfort of their own homes without the risks of social interaction.

Under these exceptional circumstances, the RLG Committee has therefore decided to exercise best endeavours and to host an Extraordinary General Meeting (EGM) this coming Thursday 18th June at 11:45, immediately following the latest “Zoom into Summer” event (a webinar with Professor John Nicholls) which is scheduled for 10:30-11:30 am. We are aware that we will not be able to achieve the usual notice period for members but feel this is the best chance to achieve quorum so that the voting is validated. To register to attend the webinar with Prof. John Nicholls and the EGM, please click the button below.

To download EGM agenda, click here.

There will be an EGM report published on the website within one week for those of you who are not able to attend in person, with opportunities to ask questions of the Committee via the website (as always). If you wish to table a question or comment in advance of the AGM, then please use the info@pouchsupport.org email address or indeed contact me directly on my personal email (dbd60@hotmail.com).

Yours sincerely

David Davies
(RLG Chairman)

Information Day Postponement

Dear Members and Guests,

The Red Lion Group Committee has reviewed the latest updates regarding the emerging Coronavirus situation across the UK and implications for the safe conduct of the Internal Pouch Annual Information Day scheduled to take place at St. Mark’s Hospital on Saturday 25^th April. As the outbreak is still gathering pace in this country, it is not possible to accurately forecast what the coronavirus status will be in 6-7 weeks’ time. Nevertheless, the Committee has taken the decision to postpone the Information Day until later in the year, when hopefully the situation will be under greater control. This is especially pertinent to pouchees and potential pouchees whose immune systems may be compromised and reflects our determination to look after the safety and wellbeing of our members and their guests at all times.

We realise this will be disappointing to delegates and appreciate your understanding of the need for this action. We will be monitoring the situation closely and will be announcing the alternative date for the Information Day as soon as possible via the usual channels (our web site, emails, posters, letters and through social media).

Thank you for your patience and continuing support. We remain open online at all times on our web site at pouchsupport.org or by email at info@pouchsupport.org and of course we wish you all well.

The RLG Committee

Ileo-Anal Pouch Surgery – A Guide for Patients

Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients

Stop Press – Zarah Perry-Woodford will be speaking at the Red Lion Group Internal Pouch Information day at St. Mark’s hospital on Saturday, 25th April 2020.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be speaking on the subject “Post-operative and long-term care of pouch patients” at its Internal Pouch Information Day to be hosted at St. Mark’s Hospital on Saturday, 25th April 2020.

You can find out more about the Information Day and reserve your place by clicking here.

Information Day 2020 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2020, which will take place on Saturday 25th 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.

(The information day is open to ALL, not just patients of St. Mark’s Hospital)

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 see highlights and download presentations from last years (2019) Information day here.

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 using the link below.

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

Become a member of the Red Lion Group and attend the Information day at the discounted rate and other benefits.

Join Now

Confirmed Speakers

Dr. Yoram Inspector

We are delighted to confirm that Dr Yoram Inspector will be speaking again following his hugely popular presentation at the Information Day in 2018. He will be speaking on “The psychology of bowel (pouch) surgery”.

Dr Yoram Inspector M.D is a consultant Psychiatrist and a Psychotherapist and the Head of the Psychological Medicine Unit of St Mark’s Hospital which provides psychological treatment and support for people who cope with various gastrointestinal diseases and disorders.

Zarah Perry-Woodford
Many of you will be acquainted with Zarah Perry Woodford who will be speaking on the subject “Post-operative and long-term care of pouch patients“. Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches. She is also the author of the acclaimed book “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“.

Zoey Wright
We are also pleased to announce that we will have a Zoey Wright as a speaker. Zoey is a fitness model and media celebrity who will be celebrating one year to the day of her J-Pouch connection. She will be discussing her J-Pouch journey and training with a J-Pouch.

You can view Zoey’s website by clicking here or on the picture below.

Lucia Braz (Research Fellow at St. Mark’s Academic Institute)
Lucia Braz is a Registered Dietitian, trained at the University of Porto where she received a BSc Honours Degree in Nutrition and Dietetics and became a member of the Federation of Nutrition Therapy Practitioners (FNTP) and British Dietetic Association (BDA) in the UK.
In 2017, she stepped out to undertake a PhD programme under supervision of Professor Ailsa Hart and Professor Gary Frost splitting her time between St Mark’s Hospital and Imperial College London. Her main research interest is the role of diet and Short-chain fatty acids in Inflammatory Bowel Disease (IBD) and Pouchitis.

FURTHER SPEAKERS TO BE CONFIRMED.

If you would like make a donation to the Red Lion Group please see our JustGiving link 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 an Internal 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

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.

If you would like make a donation to the Red Lion Group or organise your own fund raising event, please see our JustGiving links below.

Internal Pouch Information Day at St. Mark’s Hospital

25th Anniversary Internal 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 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 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 Information day will take place on Saturday 27^thApril 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)

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!
11:10-11:50	Modern developments in Pouch Surgery Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital
11:50-12:20	Pelvic floor perfection and the importance of proper emptying Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital
12:20-13:30	Lunch – a selection of sandwiches and cakes
13:30-14:00	Pharmacy Advice for Pouchees Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist
14:00-14:30	Diet and your pouch Gabriela Poufou, Dietician, St. Mark’s Hospital
14:30-14:45	Tea and coffee break
14:45-15:55	Personal pouch journeys and workshops 1) Female pouch issues Theresa Parr 2) Male pouch issues Gary Bronziet 3) Pouch family and friends (TBC)
15:55-16:00	Evaluation and close

You can download the agenda below.

Information Day Agenda 2019

Download Now!

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!

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

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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

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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.

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

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Information Day 2020 – book your place now!

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Date announced for 2020 Information Day!

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Internal Pouch Information Day at St. Mark’s Hospital

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

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

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You can book your place using the link below.

Confirmed Speakers

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

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

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