Events Archives - J Pouch support charity

J-Pouch anal and vaginal fistula study update

Updated 19 March 2025

Further to our last update on this study, we are pleased to report that the team are now ready to progress to the next stage and will be sending the questionairre to the eligible participants. People that have already registered their interest in participating will be contacted directly. If you think you may be eligible and are interested in taking part in this study, please email Dr Easan Anand at lnwh-tr.pavfcoms@nhs.net

You can download further information about the study below.

PAVF-COMS-Patient-information-sheet-March-2025

Download Now!63 Downloads

Updated 30 July 2024

We previously announced a new study into fistulae being undertaken by Dr Easan Anand, a Research Fellow at St Marks Hospital. As a reminder, a fistula is an abnormal connection (or tube) between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. They are particularly troublesome to treat – the best cure is for the body to close the fistula naturally using scar tissue. But this takes a long time and the “tube” has to be kept open during this time to prevent a closed area developing into an abscess. Hence the use of a Seton drain to help keep the fistula open whilst it is healing.

The goal of the research will be to evaluate the success of treatments for fistulae and identify the optimal method(s) to achieve the best outcomes for patients. Dr Anand will be building on work started by Dr Lillian Reza and Consultant Phil Tozer on this project. One of the fundamental challenges is to develop a questionnaire which patients can complete to evaluate their quality of life (QoL). The tool can then be used to measure the success of treatments in a standard way.

By way of an update, Dr Anand reports that there have been delays in finalising the pouch fistula quality of life scale (abbreviated to PAVFQOL). This scale is essential and will be the first and only scale which is specific to pouch-related fistulae, so it is well worth taking time to ensure it is right. Hence to all those pouchees who volunteered to assist with the research, Dr Anand sends his profuse thanks and asks that you be patient for a few more months whilst the scale is finalised. He will then be rolling out the questionnaire for volunteers to complete.

If you are a pouchee with a diagnosed fistula (either now or in the past) and you would like to join up and take part in this research then please email Dr Lillian Reza at l.reza@nhs.net. All information will be treated in the strictest confidence and the research project has been improved by an independent ethical committee.

Regards

David Davies
RLG Chair

You can view the original article on this study below.

Have you ever been diagnosed with – or treated for – a J pouch-related fistula and would you be interested in taking part in a St. Mark’s Hospital based study?

If so, would you like to help Dr Easan Anand with a research study he is leading into outcome measures for fistula treatment? Outcome measures include such things as pain, quality of life and incontinence and it is important for these to be standardised so researchers around the globe can work with the same outcomes.

Easan is working at St Marks Hospital under the supervision of Phil Tozer and Ailsa Hart, who have both given webinars for RLG in the past

Who are we looking for?

You can take part in this study if you have ever been diagnosed with or treated for a fistula related to pouch surgery and you are over the age of 18 years.

You can email Easan on lnwh-tr.pavfcoms@nhs.net if you have any further questions.

Introductory discussion meeting on Teams

Easan will be holding an introductory study management group meeting on 18 March 2024 at 7:00 – 7:30 pm on Teams. This will be purely an introductory discussion and is a fantastic opportunity to find out more about the study if you are considering taking part.

If you would like to attend, please email Easan on lnwh-tr.pavfcoms@nhs.net to request the Teams meeting link.

RLG monthly J Pouch forums on zoom

A quote from a first time attendee “…Thank you – I did enjoy the session.
I’d forgotten that in certain circles I am perfectly normal!“.

The first RLG pouchsupport zoom forum of the year took place on Tuesday 7th January with a group of pouchees dialling in from the comfort of their own homes and confounding the artic weather. The big benefit of the zoom forums is that you don’t have to travel to have an informative, supportive and relaxing pouch chat with fellow pouchees. You can make a cup of tea before, during and after or indeed crack open a tinny or a bottle of Pinot if the mood takes you (other wines are available!)

The RLG zoom forum series has been running for more than 4 years, since July 2020 when the RLG Committee set these forums up to maintain contact and communication amongst pouchees during the first Covid lockdown. The sessions are moderated by myself David Davies and Gary Bronziet – two RLG stalwarts. They make sure everyone who wants to speak gets a chance to contribute, they make sure wherever possible that all topics are discussed and they check that any new attendees are aware of the few practicalities. There are no minutes or recordings, so “what goes on in the zoom stays in the zoom” and this reassures people to disclose freely in the group. An important principle when the topics include pooh, medications and bowels (or lack of them) that would probably get an 18 rating at the cinema. The January meeting covered a wide range of topics, usually supported with all-important personal experiences and perspectives which help us to know we are not alone. Topics included :-

Blockages (causes, symptoms, treatments and the need to go to hospital),
Comparisons with life with a stoma
New stoma technology
Pouchitis (treatments)
Probiotics VSL#3 and Vivomixx (with the revelation that one attendee still gets VSL#3 on prescription!)
Haemorroids (occurrence, causes and treatments in pouchees),
Use of the Aquaflush system and comparison with a catheter alone
Use of Fibogel and Metamucil thickeners,
Gastrograpin
Bimuno prebiotic
Anusol, Germolene and Ostique stoma bags…..

In addition we talked about availability of pouch nurse specialist expertise and resourcing updates from St Marks hospital. There is no pre-set agenda, and topics to be discussed are agreed on the night.
It sounds pretty dry stuff, but humour is an important component, whether it is personal recollections of pouch disasters, confusion about best how to use a catheter on a moving train, offering used medina catheters to other pouchees (well washed apparently), how to hide a catheter on your person when attending a wedding or how to describe your operation to a blind date. This is a terrific group for some pouch-related humour!

Such is the vibrancy of the discussion – these meetings usually overrun. So it was that the meeting ended a few minutes past 9pm, but with almost everyone able to stay to the end.

This series has been running for over 4 years now; in fact the 5^th anniversary will be July 2025. It is a friendly and welcoming forum for pouchees and potential pouchees to enjoy a supportive and informal chat about pouch stuff. Thank you to everyone who dialled in and joined in with the discussions on 7^th January.

The next RLG zoom forum will take place on Wednesday 5 February starting at 7.30pm. Registration is necessary before the event to receive the dial in details, but registration does not commit you to attending – we know things crop up!

Registration is via the events page on the RLG website pouchsupport.org/events/

Looking forward to seeing familiar friends and new faces at the February session!

Best wishes
David Davies
RLG Chairman

Regular attendees will recall that we usually schedule our forums on the first Monday of the month. Please note a change to this policy. As we have been made aware, there are people that would love to attend our forums but have a clash with other regular commitments they have on Mondays. So going forward, we are going to vary the day and hope this will allow more people to attend. Hence, the next forum on Wednesday 5th February. 7:30 pm as usual!

Blockages & High Output Webinar

Join the TWINS Christmas & New Year Party!

Whether you have a stoma or an internal (J) pouch, join “the twins” for an evening packed with essential tips and tricks to ensure you enjoy the holidays worry-free!

Learn how to prevent stoma and ipouch blockages and manage high output effectively.

This event takes place on Monday 16th December at 7:30 pm. (GMT) on Microsoft® Teams.

Prior registration is required. For further infomation and to register, click on the button below.

Our next webcast – Dietary and medication Q&A for…

Our next webcast – “Dietary and medication Q&A for J pouch patients“” – featuring Uchu Meade and Gabriela Poufou

Updated 2nd December 2024

The promised follow-up session to this Q&A will now be taking place in 2025. We will let you know as soon as we have a confirmed date or keep an eye on our events calendar at pouchsupport.org/events/

Updated 29th July 2024

This webcast took place as advertised on 24th July and was greatly enjoyed by the attendees. The recording of this session is now available. Many subjects of great interest to pouchees were discussed in detail as shown below.

TIME	SUBJECT
0.00:00	Introduction
0.03:23	Vitamin B12 Deficiency
0.33:24	Passing undigested food
0.36:33	Psyllium Husk
0.42:52	Gas/bloating
0.56:46	Hydration/St. Mark’s eMix
1.13:34	Monitoring Sodium levels
1.15:10	Taking vitamin Supplements
1.22:49	Strictures/ Blockages (to be continued…)

Video timings

In fact, we ran out of time to cover all the questions that had been submitted, and we are delighted to announce that Uchu and Gabriela have volunteered to participate in another session to cover the remaining questions (and any new ones that might be added!)

We will let you know the date as soon as possible. In the meantime, enjoy the recording of Part 1, which you can find on our Youtube channel here.

After watching this recording, it would be much appreciated if you could submit your feedback at https://forms.office.com/e/a4A1nVT44V. Survey results will support Uchu and Gabriela’s personal professional development and interaction with patient groups such as pouchees is a very important part of their professional evaluation.

Our next webcast will be taking place on Wednesday 24th July at 7:30 pm (BST) and will feature Uchu Meade, Consultant Pharmacist, and Gabriela Poufou, Advanced Specialist Inflammatory Bowel Disease Dietitian – both at St. Mark’s Hospital.

Both have previously presented at Red Lion Group Information days and zoom webcasts and you can find recordings on our YouTube channel (see below). For the first time, we will be featuring the two of them together and the format of the whole session will be in the form of an interactive Question & Answer, on two of the most interesting subjects for people with an internal pouch (J Pouch or similar) and that is on the topics of DIETARY and MEDICATION advice for J pouch patients.

In April 2023, Uchu Meade achieved a significant milestone in her career by becoming the first consultant level pharmacist at St Mark’s Hospital. She has presented for RLG previously on the subject “Pharmacy advice for Pouch Patients“. You can find view the recording here.

Also taking part will be Gabriela Poufou. Gabriela is an Advanced Specialist Inflammatory Bowel Disease Dietitian at St. Mark’s. Her webcast “Healthy eating for Patients with a J Pouch” is one of the most viewed recordings on our YouTube channel. You can see it here.

You will be able to put your questions during the session but we would like to encourage you to submit questions in advance. Please submit questions to info@pouchsupport.org so that we can make sure the most popular questions/challenges are addressed.

(The session will be recorded and published on our YouTube channel – but privacy of participants will be maintained).

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the recent webcast featuring Uchu Meade and Gabriela Poufou on the subject “Pharmacy and Dietary advice – Q&A” on our YouTube channel here

You can view the recording of the recent webcast featuring Janindra Warusavitarne and Ben Barbanel on the subject “Surgeon/Patient – a special relationship” on our YouTube channel here

St. Mark’s Hospital relocation to Central Middlesex is complete

St Mark’s completes a ‘remarkable journey’ marked by unveiling of plaque by Sir Tom Troubridge

By Christopher Browne – Roar! Editor

It’s official! St Mark’s at London’s Central Middlesex Hospital is finally open for business.

Actually, it’s been open for business and operating as the new St Mark’s (sharing duties and departments with the ‘old’ St Mark’s at Northwick Park, Harrow) for almost three years.

However, last week all the key figures behind the move held a buoyant, good-humoured opening ceremony at this clean, clinical ultra-modern hospital site in central London’s Park Royal.

The new St Mark’s consultants, surgeons, research specialists, doctors, nurses, support staff, former patients and support groups mingled with distinguished St Mark’s consultants from the past and several guests headed by the local MP Dawn Butler, Labour MP for Brent East, and the Labour peer Baroness Pilkeithley.

In her introduction, Pippa Nightingale, CEO of the London North West University Healthcare Trust, praised the activities of the Red Lion Group, comments that were greeted with a flurry of applause from the audience. Then several speakers reviewed the hospital’s achievements of the past three years, which Sir Tom Troubridge, Chairman of the St Mark’s Hospital Foundation, referred to as a “remarkable journey”.
(See below for full details of Speakers)

Suddenly the mood changed when we were invited to lunch. Most of us have our own take on hospital food, but this time it was different – a lavish spread that would do credit to anything from M&S (perhaps some of it came from there!).

The good humour was spreading and the by-now cheerful throng was divided into groups for a series of guided tours of the hospital’s new departments, some of its streamlined, recently-installed equipment – and many admiring glances at the building’s radical design features.

Finally, we all assembled in the main atrium where a commemorative plaque was unveiled by Sir Tom Troubridge.

See Pictures from event below.

Plaque Group
Plaque Group
John Nichols & James Thomson
Plaque Group
Jason Bacon & Sir Tom Troubridge
Pippa Nightingale & Dawn Butler
James Thomson & John Nicholls
Simon Gabe, Dawn Butler – intestinal rehabilitation
Siwan Thomas Gibson
John Nicholls & Robin Kennedy
Sir Tom Troubridge
Gary Bronziet, Chris Browne & David Davies (Red Lion Group)
The St. Mark’s Plaque

Speakers in details :-

How and why St Mark’s Hospital Moved
Professor Omar Faiz – Medical Co-Director St Mark’s Hospital
What has been Achieved in the last three years?
Miss Carolynne Vaizey – Medical Co-Director St Mark’s Hospital
What does the future hold?
Professor Siwan Thomas Gibson – Incoming Medical Director, St Mark’s Hospital & Mr Ian Jenkins – Incoming Deputy Medical Director, St Mark’s Hospital
A Remarkable journey
Sir Tom Troubridge, Chairman of the St Mark’s Hospital Foundation.

Our next webcast – featuring Janindra Warusavitarne and Ben…

Our next webcast – “Surgeon / Patient a special relationship” – featuring Janindra Warusavitarne and Ben Barbanel

Our next webcast will be taking place on Wednesday 10th July 2024 at 7:30 pm (BST) and will feature Janindra Warusavitarne, the renowned St. Mark’s colorectal surgeon. Janindra is one of our most popular speakers and many of you will know him personally, or may have seen him on a previous webcast – speaking about advances in pouch surgery. On this occasion, the focus will be on the importance of the surgeon/patient relationship.

Also taking part will be Ben Barbanel, a Red Lion Group member, who was fortunate to have had his pouch constructed by Janindra about 5 years ago. Ben was honoured to have been invited to speak at the annual conference of the European Society of Coloproctology (ESC) in September 2023 on the subject “What do the public expect from surgeons”?

Janindra commented “The concept of shared decision making is vital to ensure that in these challenging times we as clinicians hear what patients have to say and how the services we provide can ensure that their quality of life is also improved, particularly in the context of chronic diseases“

We expect this to be a very popular and fascinating webcast with plenty of time for the attendees to put their own questions to both Janindra and Ben.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Dr Sonya Frearson talks “Psychological impact of bowel surgery”…

Dr Sonya Frearson talks “Psychological impact of bowel surgery” in our next webcast

Following on from our highly successful webcast featuring Ellie Bradshaw, next in our series of live webcasts will take place on Friday 21st June at 5:00pm and will feature Dr. Sonya Frearson, consultant clinical psychologist and head of the St. Mark’s Hospital Psychological Medicine Unit (PMU). Within the Psychological Medicine Unit (PMU) she is developing psychological support for St Mark’s gastroenterology patients by gradually embedding specialist practitioner psychologists into St Mark’s multi-disciplinary care teams. You can expect the Q&A to be very interesting providing an opportunity to discuss the psychological impact of undergoing and living with major bowel surgery.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Updated – Ellie Bradshaw talks “Biofeedback” in our next…

Ellie Bradshaw talks “Biofeedback” in our next webcast

Updated 30 May 2024

The latest webinar in the RLG 2024 series took place on 29 May with Ellie Bradshaw talking about Biofeedback, a unique method of pouch emptying. Over 50 pouchees attended the event from the comfort of their own homes via zoom. Ellie is a highly experienced nursing specialist who used to be in charge of the Biofeedback unit at St Mark’s Hospital. She took a sabbatical to work at the Princess Grace Hospital in London and has now returned to St Mark’s to join the highly experienced and award winning pouch nurse specialist team. Her presence will add considerable capabilities and expertise to a team which is already world class.

Ellie’s passion for helping pouchees was evident as she carefully walked us through the various ways in which pouchees can act and exercises they can do to improve and preserve their pouch function through control and strengthening of their pelvic floor. As well, she provided information on creams and medical devices which are available to pouchees and which can help to alleviate some of the common pouch issues, from which many of us suffer to a greater or lesser extent.

In a lively and extended Q&A session Ellie was able to answer both broad and very personal pouch-related topics as diverse as sex for pouchees, night time incontinence, butt creams, stool thickeners, anus and lower back pain, how to achieve full emptying, probiotics, pelvic floor exercises and investigations when the pouch is not functioning well. The recording of the event is available on our YouTube channel here.

This was a compassionate and comprehensive talk packed full of practical tips and suggestions and some humour along the way to emphasise the messages. Another brilliant event from Ellie, who is a long-term supporter of the RLG charity, having been delivering talks for us since 2006. We are indeed grateful for all her support and delighted to have her back at St Mark’s.

Thank you to all the attendees for such a great series of questions.

The next webinar in the 2024 series will take place on Friday 21 June at 5pm (BST) when Dr Sonya Frearson, Consultant Clinical Psychologist and Head of the St Mark’s Psychological Medicine Unit will talk about psychological issues associated with surgery and recovery. Please register beforehand at pouchsupport.org/events/ to receive the dial in link.

David Davies
RLG Chairman

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Following on from our highly successful webcast featuring Prof John Nicholls, our next zoom webcast will take place on Wednesday 29th May at 7:30pm and will feature Ellie Bradshaw. A lively and exuberant speaker Ellie will let us into the secrets of biofeedback – a unique method of pouch-emptying. Ellie, who recently returned to St. Mark’s Hospital following a spell at the renowned Princess Grace Hospital in London, says she thrives on helping people manage their bowel and pelvic floor symptoms. Those traditional pelvic floor exercises will never be the same again! Ellie has spoken at previous Red Lion Group events and is one of our most popular speakers.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Prof John Nicholls on the subject “40 years of colorectal surgery” on our Youtube channel here

J pouch forum update and register for next event

J Pouch forum update and register for next event

Red Lion Group chairman, David Davies, reports on our most recent online J-pouch forum

The latest RLG pouch forum took place on Monday 1 April at 7.30pm via the magic of zoom and with IT guru and RLG Membership Secretary Gary Bronziet pressing all the right buttons. RLG Chairman David Davies was in the Chair and welcomed 20 or so pouchees and potential pouchees who were joining from locations as far afield as Texas and New York to the West, Moldova to the East and Bolton from oop north. The great advantage of online meetings is that people can join from the comfort of their own homes without having to travel.

David emphasised that the meetings were completely confidential with no recordings and no minutes and are a “safe space” to discuss pouch-related matters in confidence. There is no prior agenda – the topics are proposed on the night.

A lively meeting ensued with people contributing to vibrant discussions on a wide variety of pouch-related topics.

Treatments for butt burn, how to reduce night-time frequency of bowel movements, what to do if your surgeon (who is not a pouch expert) recommends that your 30-year old pouch be disconnected.

The virtues of having the second and third operations conducted in one go (proposed by one attendee who was concerned about recovery times alongside work commitments).

We discussed potential correlations between having a pouch and getting pancreatitis (inflammation of the pancreas) [for information, there are no known correlations for the pouch per se, but if you have had UC then you are more likely to get pancreatitis apparently].

We also touched on the benefits of the FODMAB diet for encouraging good pouch function and the different types of pouch irrigation methods that are available to enable pouchees to fully empty.

One attendee is contemplating a pouch after having their large intestine removed and was greatly impressed by the support and the friendliness of the meeting and the amount of relevant and real-life information shared by the participants, which will help them with their decision. All in all, a very busy and informative evening!

The next RLG pouch forum will take place on Monday 6 May (also a bank holiday) starting at 7.30pm. Please save the date in your diaries and register beforehand below to receive the dial in details.

With thanks to all the attendees for your many and varied contributions.

David Davies
RLG Chairman

PS. See pouchsupport.org/events for details of other upcoming events, including the webcast featuring Professor John Nicholls on Tuesday 16th April.

Prof. John Nicholls to kick-off RLG 2024 webcast season

We are delighted to announce that we will be kicking off our webcast season for 2024 with a talk from Professor John Nicholls, considered to be the the father of the ileo anal pouch (J Pouch).

The Red Lion Group will be repeating its popular webcast series in 2024, providing an opportunity for J Pouch patients to see and hear from the foremost experts in the field of J-pouch surgery and the challenges of living with a J-pouch. As in previous years, each talk will be followed by an interactive Q&A so a chance to put your questions to the experts.

The first event this year will be on Tuesday 16th April at 7:30 pm (BST) and will feature the eminent colorectal surgeon Professor John Nicholls, who will need no introduction to many of you. Not only was he the co-inventor, with SIr Alan Parks, of the procedure for ileal-pouch anal anastomosis (IPAA), but he has been responsible for the creation of more pouches than anyone on the planet earning him the sobriquet “the pouch king“.

Professor John Nicholls is a retired British colorectal surgeon, Emeritus Consultant Surgeon at St Mark’s Hospital London and Professor of Colorectal Surgery at Imperial College London. He is also a Patron of the Red Lion Group.

The Red Lion Group webcasts are FREE and open to all, but pre-registration is required to receive the meeting link. You can register using the “Register now” button below.

View Recording

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

Stop Press! Updated at 13:20 on 16 April. The last time I checked, we had 98 people registered and our meeting capacity is 100 For those unable to join the Zoom meeting, the webcast will also be Streamed Live on the J Pouch Support (UK Specific) Facebook group. If you are not currently a member, you can join here. A recording of the webcast will also be available on our Youtube channel youtube.com/@PouchSupport

J-Pouch anal and vaginal fistula study update

J-Pouch anal and vaginal fistula study update

Who are we looking for?

Introductory discussion meeting on Teams

RLG monthly J Pouch forums on zoom

RLG monthly J Pouch forums on zoom

Blockages & High Output Webinar

Blockages & High Output Webinar

Join the TWINS Christmas & New Year Party!

Our next webcast – Dietary and medication Q&A for…

Our next webcast – “Dietary and medication Q&A for J pouch patients“” – featuring Uchu Meade and Gabriela Poufou

St. Mark’s Hospital relocation to Central Middlesex is complete

St Mark’s completes a ‘remarkable journey’ marked by unveiling of plaque by Sir Tom Troubridge

Our next webcast – featuring Janindra Warusavitarne and Ben…

Our next webcast – “Surgeon / Patient a special relationship” – featuring Janindra Warusavitarne and Ben Barbanel

Dr Sonya Frearson talks “Psychological impact of bowel surgery”…

Dr Sonya Frearson talks “Psychological impact of bowel surgery” in our next webcast

Updated – Ellie Bradshaw talks “Biofeedback” in our next…

Ellie Bradshaw talks “Biofeedback” in our next webcast

J pouch forum update and register for next event

J Pouch forum update and register for next event

Prof. John Nicholls to kick-off RLG 2024 webcast season

Prof. John Nicholls to kick-off RLG 2024 webcast season

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The Red Lion Group is a UK registered charity number 1068124