Stories - Pouch support charity

Important update for Medina Catheter users

A significant number of J pouch owners use the Medina Catheter to assist with emptying their pouch. It has recently been announced that the product will be discontinued. The Red Lion Group has been in contact with Wellspect (the UK distributor) for clarification and we can share the following update(s) from them.

Updated 24 November 2021

The following response was received from the marketing manager at Wellspect on 5 November 2021

We are still actively looking at potential alternative products. We have one promising option we are exploring at the moment, although it is not currently available in the UK. If it proves suitable, the next step would be to find a UK distributer willing to take it on. I have kept your contact details and will let you know how this progresses.

In the meantime, we have sufficient stock of the Ileostomy catheter and have not yet taken a decision on the eventual date for discontinuation in the UK. On current usage rates we have significantly more than 6 months available. While I completely understand their concern, I would urge all users to continue to order as normal.

Posted 15 June 2021

Unfortunately, our ileostomy catheter is produced in very small volumes and global demand is both low and in steady decline. We have therefore had to take the difficult decision to discontinue this product.

At current UK usage rates we will have sufficient stock to continue supply for a minimum of 6 months. While there are no direct alternatives currently available on the UK Drug Tariff, we are actively looking at products with other manufacturers/suppliers which may prove suitable.

We’ll aim to keep you informed regarding an exact date after which the product will no longer be available on prescription and also if there is any progresses with alternative manufactures/suppliers.

In the meantime, I’d like to extend my apologies for any inconvenience this has caused.

We have responded explaining that, while they label the product an “ileostomy catheter”, it is in practise also used by many J Pouch (and other pouch) owners, and the planned discontinuance is causing much distress in the pouch community.

We will keep you informed of any updates in particular with regard to a replacement product.

On that subject, Theresa Parr (RLG committee member) has for some time been an advocate of the Aquaflush system as an alternative to the Medina Catheter. It is also available on prescription. See here for further information.

Events

Fistulas Associated with Pouches

Zoom into Summer series of Pouch webcasts 2021
(Updated 19 November 2021)

Fistulas associated with Pouches

We have just confirmed another webcast to be co-presented by Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Lillian is currently undertaking a period of out-of programme research at St Marks Hospital under the supervision of Mr Phil Tozer, Professor Sue Clark and Professor Ailsa Hart. Her research is looking at the various aetiology of fistula disease in ileal pouch anal anastomosis and aims to define characteristic features and specific management for these.

As you can guess, their talk on Wednesday 8th December at 7:30 pm will be on the subject of Fistulas associated with Pouches.

And don’t forget to register for our regular monthly open forum on Monday 6th December at 7:30 pm.

Pre-registration is required. To register for all RLG webcasts and forums, go to https://pouchsupport.org/events

You can see recordings of past events and details of upcoming events below.

Following last years highly succesful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (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, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be 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!

Keep an eye out for updates, including additional speakers and dates and times.

The following speakers are currently confirmed.

Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Subject: Through the keyhole – latest developments in pouch surgery
Recorded: Wednesday, 5 May 2021. 07:30 pm (London time)

Prof. R. J. Nicholls, Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London

Subject: Evolution of Modern Surgery
Recorded: Wednesday, 19 May at 7.30 pm (London time).

Uchu Meade, Head of Pharmacy at St. Mark’s Hospital.

Subject: Keep taking the tablets: a guide to the best drugs and when to take them.
Recorded: Wednesday, 26 May at 7.30 pm (London time).

Professor Ailsa Hart, Consultant Gastroenterologist, Sub-Dean (St Mark’s Academic Institute)

Subject: Professor Hart will be speaking on the subject “Managing a pouch behaving badly”

Recorded: Monday 14, June 2021 at 07:30 PM (London time)

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

Subject: St Mark’s Hospital’s clinical services at Northwick Park, Central Middlesex Hospital and Beyond

Recorded: Monday, 28 June 2021 at 7.30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Gabriela Poufou, Dietician St. Mark’s Hospital

Subject: Healthy eating for Patients with an Internal Pouch

Recorded: Wednesday 4 August 2021 at 7:30 pm (London Time)

To Register for events go to https://pouchsupport.org/events

Petya Marinova, Pouch nurse specialist, St. Mark’s Hospital

Subject: St Mark’s Hospital: Life after the Pandemic

Recorded: Wednesday 22 September 2021 at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org /events

Ellie Bradshaw, formerly gastrointestinal specialist nurse at St Mark’s Hospital, now at London’s Queen Charlotte Hospital.

Subject: Crouch for your pouch – key emptying tips

Recorded: Wednesday 13th October at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Subject: Fistulas associated with pouches.

Date: Wednesday 8th December at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

For a review of last years Zoom into Summer series webcasts , click HERE.

Events

Stoma and Pouch Care – Virtual information day

Join the St. Mark’s Hospital Stoma & Pouch Nurses for a Virtual information day on Thursday 25th November 2021 (09:00-15:00)

This virtual event to be held on Zoom will feature a number of guest speakers on a variety of Pouch and Stoma related subjects and provide the opportunity to put your questions directly to the nursing team.

ZOOM DETAILS

Date: Thursday, 25th November 2021
Title: Stoma & Pouch Care Information day
Time: 09:00-15:00 (London time)

To join the event on the day, use the following link.
https://us02web.zoom.us/j/82232813539

Meeting ID: 822 3281 3539

Information Day Agenda

See below to download a printable copy of the agenda.

For further information about St. Mark’s Hospital Stoma & Pouch Care services go to https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Download the Information Day Poster and Agenda below

Stoma & Pouch Care Information Day Poster

Download Now!

Information Day Agenda

Download Now!

News

RLG donates £5,000 towards pouch-related research

Red Lion Group has made a donation of £5,000 to St. Mark’s Hospital Foundation towards pouch related research

A delighted Jason Bacon (left), CEO of the St Mark’s Hospital Foundation, receives a £5,000 donation from Christopher Browne, Roar! editor and RLG PRO, at London’s St Mark’s Hospital.

The money which was raised by the Red Lion Group will help fund vital pouch-related research projects at St Mark’s and Central Middlesex Hospitals.

Mr Bacon commented: “We are extremely grateful for the Red Lion Group’s very generous donation towards supporting research at St Mark’s Hospital. This will help us in our charitable mission to support over 30 research fellows working alongside our specialist consultants and nurse teams.”

St Mark’s Hospital Foundation helps to fund innovative research that is undertaken at St Mark’s Hospital, a specialist in the treatment of bowel disease. For further information see https://www.stmarkshospitalfoundation.org.uk

Red Lion Group is a small charity run entirely by volunteers. Surplus funds are donated to the St. Mark’s Hospital Foundation which helps fund the innovative research projects undertaken at St Mark’s Hospital.

News

Write for Roar! and see your name in lights!

Do you have a story, whether moving or funny, to tell about you and your pouch? It could be published in next edition of ROAR!

The second major event in December – apart from Christmas – is the winter edition of Roar! magazine. And this year is no exception.

The main theme of the new magazine will be Diet. This is partly inspired by IBD specialist Gabriela Poufou’s compelling Zoom talk in August (you can hear it on the website) when she showed us how the way we eat and what we eat can make a significant difference to our general well-being and recovery from surgery.

We’ve already featured articles on fitness and mental health in previous Roar! magazines. You may have read them and, if so, I think you’ll agree that many of them were stirringly and skilfully written.

So to follow in the same vein, the December theme is Diet and I would love to hear your views on the subject and any attempts you’ve been making to improve your general lifestyle and well-being (haven’t we all!) – pandemic or no pandemic.

And talking of articles, do you have a story, whether moving or funny, to tell about you and your pouch? Or why not tell us why you decided to join the Red Lion Group and what you hope to achieve with the group in the future. Or you might have done something brave or intrepid such as join a climbing expedition or run a mini-marathon.

Whatever your story, however personal or pithy, we’d love to hear it. Please send it to Chris Browne, the Roar! editor, at cbrowne@brownemedia.co.uk.

The deadline’s 10 December.

Chris Browne
Roar! Editor

Events

Ellie Bradshaw – “Crouch for your Pouch” recording available

Contents

Membership Secretary Blog

Greetings all and hope this finds you well. Going forward I will be posting regular news updates in the form of a BLOG. I hope you find this useful! If you have any questions about contents herein, please email me at membership@pouchsupport.org

Best Wishes

Gary Bronziet

RLG Membership Secretary

Published 19 October 2021

Ellie Bradshaw – “Crouch for your Pouch – key emptying tips” recording available”

Last week’s webcast by Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace, on the subject “Crouch for your Pouch – key emptying tips” is now available on the Red Lion Group’s YouTube channel.

This was a fascinating and helpful webcast, followed by an interesting Q&A session. If you missed out, or wish to view it again, you can see it here.

Ellie Bradshaw – “Crouch for your pouch” – key emptying tips

Registration is also open for our next Open Forum on Monday, 1st November.

To view recordings and/or register for events go to our Events page pouchsupport.org/events.

Published 24 September 2021

Petya Marinova Recording available

For those that missed it, and for those that want to see it again, a quick note to let you know that the recording of the webcast by Petya Marinova, Pouch Nurse Specialist at St. Mark’s hospital, is now available for viewing.

Registration is also open for our next Open Forum on 4th October and the next webcast on 13th October by Ellie Bradshaw titled “Crouch for your Pouch – key emptying tips“

To view recordings and/or register for events go to our Events page pouchsupport.org/events.

Published 10 August 2021

“Can’t wait” / Medic Alert card

By now, registered (paid up members) should have received the latest (Summer 2021) edition of our ROAR! magazine which contains our widely anticipated “Can’t Wait”/Medic alert card!

Hope you have received yours and will find it useful. You may have noticed that the “Medic Alert” side includes a QR code, which is a short cut to the medic alert information on our website.

Take a look as it contains a wealth of useful information for pouchees and medics.

How to use a QR code

Many of you will have become familiar with QR codes (if you weren’t already!) due to COVID and the requirement to check-in at many locations.

Depending on your smart phone, you may be able to access the web page by simply opening the camera on your phone and pointing at the image. Give it a try. You can try it here if you don’t have the card yet.

If that doesn’t work, then you may need to download a FREE QR code reader from the App store or Google Play. Search in the App store for QR Code or QR Reader or similar and you will find many free apps!

Failing that, you can always access the same information by going to pouchsupport.org/medic

Gabriela Pouchou recording and slides now available.

Last week’s webcast by Gabriela Pouchou, Dietician St. Mark’s Hospital, on the subject “Healthy eating for Patients with an Internal Pouch” is now available on the Red Lion Group’s YouTube channel.

This was a fascinating and helpful webcast, followed by an interesting Q&A session. If you missed out, or wish to view it again, you can see it here.

Gabriela has also kindly shared her PowerPoint slides with us, which you can find on the resources section of our website. see pouchsupport.org/resources

“Save the date” Annual General Meeting (AGM)

The 2021 Annual General Meeting (AGM) of the Red Lion Group will take place on Zoom, on Monday 6th September at 7:00 pm. Formal notification will be sent out soon.

We expect this to be a short meeting and will be followed at 7:30 pm by the regular monthly open forum.

Please Register your attendance at pouchsupport.org/events to attend the AGM and/or the Forum.

News

Recommended annual blood tests for pouch patients

A new document has been added to the RESOURCES section of this website and can also be downloaded below.

It describes the blood tests that St. Mark’s patients usually have done as part of their annual checkup at the hospital.

If you no longer have follow ups at St. Mark’s or are not a patient there, then you can request that your G.P. does these as part of your Annual Long Term Condition review.

Blood tests explained

Download Now!

Check out our Resources page for other useful documents and videos.

News

Goodbye Tim – and thanks for everything!

Will the Red Lion Group’s Roar! magazine ever be the same again? The reason I say this is Tim Rogers who has masterfully laid out the magazine for umpteen years has decided to stand down from the RLG committee for work and personal reasons.

And we are all very sad to see him go – a mere 27 years after he and a small group of patients and staff from St Mark’s Hospital founded the RLG in London’s Syon Park in 1994.

As Tim said prophetically at the time: “I could not help thinking that this was the beginning of something big.” Wise words indeed!

Tim was the first editor of Roar! and you can still read about RLG’s early activities in the Roar! archive on this website. And it was Tim who, as a marketing and IT specialist, set up and hosted the forerunner of this website.

I have worked with Tim on Roar! for many years and have always admired his magazine design and IT skills – and I like to think we have managed to keep our readers amused and entertained.

So farewell Tim. We are very grateful for your hard work, enthusiasm and ideas and wish you and your family all the very best for the future.

CHRISTOPHER BROWNE – ROAR Editor

Tim Rogers (left) with RLG Chairman David Davies on the occasion of the RLG
25th Anniversary Information Day at St. Mark’s Hospital in 2019

Events

Kangaroo club information day on 16 October 2021

A reminder of a terrific event coming up in the post-covid pouch world – the Kangaroo Club is holding a real live face-to-face Information Day in Oxford on Saturday 16 October (with internet link for those who wish to watch online).

The event is open to non-members and is FREE (but they will be asking for a contribution to cover lunch).

Pre-registration is necessary by sending email to info@kangarooclub.org.uk

The draft agenda and full details can be downloaded by clicking below.

download agenda

News

Ulcerative Colitis with pouch surgery

Did you have pouch surgery for your ulcerative colitis and are now struggling with flare ups? Have you tried antibiotics, but they don’t seem to work for you?

If you have pouchitis and experience symptoms like abdominal pain, you may be eligible to take part in a new clinical trial at MAC. If eligible you will receive up to £1,135 for your time and commitment.

Visit: https://bit.ly/3BAyeQZ

Text: PAIN to 81025

Call: UK Freephone 0800 121 6401

Important update for Medina Catheter users

Fistulas Associated with Pouches

Stoma and Pouch Care – Virtual information day

RLG donates £5,000 towards pouch-related research

Write for Roar! and see your name in lights!

Ellie Bradshaw – “Crouch for your Pouch” recording available

Membership Secretary Blog

Published 19 October 2021

Ellie Bradshaw – “Crouch for your Pouch – key emptying tips” recording available”

Published 24 September 2021

Petya Marinova Recording available

Published 10 August 2021

“Can’t wait” / Medic Alert card

How to use a QR code

Gabriela Pouchou recording and slides now available.

“Save the date” Annual General Meeting (AGM)

Recommended annual blood tests for pouch patients

Goodbye Tim – and thanks for everything!

Kangaroo club information day on 16 October 2021

Ulcerative Colitis with pouch surgery

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The Red Lion Group is a UK registered charity number 1068124