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Summary of guest speakers – J-Pouch webcasts 2021

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)

Following out 2020 highly successful 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.

We had the pleasure of listening to the following speakers in 2021. We look forward to running a similar series next year. Join us in 2022!

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.

Recorded: 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.

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.

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

Ellie Bradshaw – “Crouch for your Pouch” recording available

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.

Recommended annual blood tests for j-pouch patients

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

It describes the recommended annual blood tests for j-pouch patients that St. Mark’s j-pouch 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!3145 Downloads

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

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

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

Clinical trial invitation – Ulcerative Colitis with pouch surgery

Clinical trial invitation -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

St. Mark’s Oral Rehydration Solution (ORS)

Are you getting enough hydration? (How to make St. Mark’s solution)

If you have a J Pouch, it is important to ensure that you are getting adequate and appropriate hydration. For many years, St. Mark’s has recommended a particular formulation for pouchees and ostomates. In this article we explain how to make the St. Mark’s hydration solution.

(Updated 28 December 2022)

St. Mark’s solution is a potassium-free glucose electrolyte mix commonly referred to as an oral rehydration solution (ORS). It is used for the management of short bowel syndrome caused by surgical removal or congenital disease of the small intestine. St. Mark’s solution may be recommended by your doctor or dietitian if you have a high pouch output.

Due to this complex condition you may not be able to absorb enough water, vitamins, minerals, protein, fat, calories and other nutrients from food whilst on a normal diet. If you are not absorbing enough fluid you may experience a high output from your stoma.

If your output is high and you are losing more than 1500ml per day from your pouch, you are at a greater risk of becoming dehydrated. To prevent dehydration you may be advised to drink 1 to 3 litres of ORS solution, sipped throughout the day.

How to make St. Mark’s solution

All ingredients for St. Mark’s solution can be bought from supermarkets or pharmacies for less than a single prescription charge. The ingredients need to be dissolved in 1 litre of cold tap water The prescribed amount should be sipped throughout the day The solution must be thrown away within 24 hours and a fresh solution should be prepared the following day . The solution may taste salty but can be improved by:

being stored in the fridge before you drink it, so it is chilled being frozen and taken as slush ,
being sipped through a straw ,
adding a small amount of squash, fruit juice or cordial.

These adjustments are best added while making up the solution rather than adding to each glass, to ensure the salt content remains high

Ingredients for 1 litre batch

Glucose powder (20g – 6 teaspoons)
Table salt (sodium chloride) 3.5g – 1 level 5ml. tea spoon
Sodium bicarbonate or sodium citrate 2.5g – heaped 2.5ml teaspoon

Managing your pouch output

Drinking too much ordinary fluid will increase your pouch output and make you dehydrated. When it is hot, we sweat and lose salt and fluid from the body. In this situation people with a high pouch output are more likely to get dehydrated and you may find you need to drink more electrolyte mix to replace these losses.

Speak to your doctor or dietitian for advice on increasing the amount of daily St. Mark’s solution you are drinking.

You can reduce your pouch output by:

Limiting the amount of ordinary fluids that you drink (for example fruit juice, squash, fizzy drinks, water, tea, coffee) to about 1 litre (about 6 cups per day)
Drinking a rehydration solution like St. Mark’s solution electrolyte mix to help your body absorb fluid and salt
Increasing your salt intake
Reducing your fibre intake

If you need more information, please talk to your doctor, specialist nurse or pharmacist.

St. Mark’s hospital clinical services at Northwick Park, Central…

St. Mark’s hospital clinical services at Northwick Park, Central Middlesex and beyond

The latest in the Red Lion Group Zoom into Summer webcasts continued last night (June 28th 2021) with an excellent presentation by Jason Bacon, CEO of the St Mark’s Foundation. The St Mark’s Foundation is a non-NHS charity linked to St Mark’s Hospital and who raise money to support fundamental research and clinical work being conducted at this centre of excellence for bowel surgery. The Foundation raises approximately £2m every year for this tremendous cause and Jason has regular meetings with the clinic staff to understand their needs and how the funding should best be directed. The Foundation also delivers a huge amount of training resource to the St Mark’s Academy.

Jason spoke about the disruptions caused by COVID, with surgery being stopped at St Mark’s as Northwick Park was transformed into a front-line covid hospital, including the St. Mark’s Frederick Salmon ward. The pouch nurses and other specialist staff were relocated to Central Middlesex Hospital and with the reality that only very urgent outpatient cases could be seen.

The staff remain at Central Middlesex Hospital and this might be a permanent move but no one is sure about this at the moment. The restrictions are more relaxed so the pouch nurses have been able to expand access to their levels of support for pouchees, and potential pouchees.

Jason was full of praise for the multi-disciplinary specialist skills which are integrated and available to provide thorough care to pouchees before, during and after their surgical journey and this is recognised by the fact that 60% of St Mark’s patients are tertiary referrals (in other words they are patients who are referred from other hospitals).

Central Middlesex Hospital is a modern facility with excellent parking for those travelling by car and an excellent local bus service with a sub-depot located right outside the hospital.

Every cloud has a silver lining and Jason spoke warmly about the skills developed as a result of adapting to the new challenges of covid, in particular the conduct of outpatient consultations over the internet via zoom calls. Zarah Perry-Woodford will be speaking on this topic in more detail during her RLG Zoom lecture in September (date to be announced).

Jason was also able to offer informal comment and advice on the availability of medina catheters after the current supplier withdraws the product. RLG will be following up on this on behalf of our members.

The next in the series of Summer lectures takes place on 7 July with Ellie Bradshaw talking about the importance of full emptying on pouch health and function. Until recently, Ellie was a specialist nurse in the Biofeedback Unit at St Mark’s, so she has a huge amount of knowledge and expertise and is an engaging and entertaining speaker.

You can see a full recording of the Jason Bacon webcast and register for upcoming events at https://pouchsupport.org/events

David Davies
(RLG Chairman)

Summary of guest speakers – J-Pouch webcasts 2021

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)

RLG donates £5,000 towards pouch-related research

Write for Roar! and see your name in lights!

Write for Roar! and see your name in lights!

Ellie Bradshaw – “Crouch for your Pouch” recording available