IBD Patient Day (Celebrating World IBD Day) at St.…

IBD Patient Day (Celebrating World IBD Day) at St. Mark’s

This year St. Mark’s Hospital Foundation is delighted to be hosting an IBD Patient day on Saturday 13th May celebrating World IBD day!

This event is in partnership with our amazing clinical colleagues, and we would absolutely love to see you there. This jam-packed day features talks from members of the St Mark’s specialist IBD team, St Mark’s Surgeons and Consultants.

This is an opportunity for patients to come together at Central Middlesex Hospital as the new home of St Marks.

The World IBD day theme is going to be “ageing well with IBD“, where we will connect people of all ages and offer support as they live with IBD.

Admission is FREE but registration is required. You can register here.

World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn’s disease and ulcerative colitis, known as inflammatory bowel diseases. You can find out more about World IDB day at https://worldibdday.org

New season of J-Pouch webcasts announced for 2023

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New season of J-Pouch webcasts announced for 2023

Following on from our highly popular J-Pouch webcasts on zoom in 2021/22, we are excited to announce that we will be repeating this in 2023 and we already have some top speakers lined up. 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. Each talk will be followed by an interactive Q&A so a chance to put your questions to the experts. We will have some familiar and popular speakers from previous years, and also some new faces.

NEW THIS YEAR – we will also be LIVE STREAMING the webcasts on our Facebook Group!

We are delighted to announce that Valerio Celentano – head of the J-pouch one-stop clinic at Chelsea & Westminster Hospital – will be opening this years series on Thursday, 9th March on the subject of “Ileoanal pouch formation and revisional surgery for pouch problems“.

On Tuesday 16th May, you have the opportunity to see Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital, who will be speaking on Advances in laparoscopic approach to pouch surgery, and we also have lined up Professor Omar Faiz, Clinical Director and Consultant Colorectal Surgeon at St Mark’s Hospital, who will be talking about his pioneering research programme into robot technology (date to be confirmed).

Other speakers include Ellie Bradshaw – Using Biofeedback to help with Pouch emptying problems, Uchu Meade –Medication associated with j pouch and when to use them“ and there will also be a chance to meet the St. Mark’s Hospital Pouch Nurse team for an interactive Q&A.

Registration is required to attend the zoom sessions. To register and to see the details of other upcoming sessions, go to pouchsupport.org/events or click on button below.

Ileoanal pouch formation and revisional surgery for pouch problems

Valerio Celentano – Head of J-Pouch One stop Clinic at Chelsea and Westminster

Mr Valerio Celentano – Consultant Colorectal Surgeon, Chelsea & Westminster Hospital NHS Foundation Trust

Date/Time: Thursday, 9 March 2023 at 7:30 pm (London time)

Ileal pouch-anal anastomosis (IPAA) after total proctocolectomy (removal of entire large bowel and rectum) is a surgical procedure for ulcerative colitis refractory to medical treatment and majority of patients with familial adenomatous polyposis (FAP), as an alternative to permanent end ileostomy. Although many patients undergoing pouch surgery have satisfactory functional and long-term outcomes results, the procedure is complex and associated with problems and complications in the short- and long-term. Several complications following pouch surgery can lead to the pouch requiring removal (pouch excision) or permanent diversion (need for ileostomy) and reported rates can be up to 20%. This spectrum of conditions carries the very unfortunate and likely inappropriate name of “pouch failure”.

Gaining experience in pouch surgery is hard as the procedure is performed infrequently across many hospitals, as reported by the UK Pouch registry, outlining that the average number of pouches performed in English institutions was low and one quarter of the surgeons undertaking this operation had performed only one case over the last five years. The interactive talk will discuss the challenges of ileoanal pouch surgery and some of the surgical complications that can benefit from revisional (redo) pouch surgery.

An institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery will also be presented.

For a detailed description please refer to :-

https://www.bsg.org.uk/service-success-stories/the-one-stop-ileoanal-pouch-surgery-clinic-a-multidisciplinary-patient-centred-approach/

Recorded 9 March 2023

Biofeedback and other techniques to help you empty your pouch

Recorded 26 April 2023

Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace

Date/Time: Wednesday, 26 April 2023 at 7:30 pm (London time)

Lively and exuberant speaker Ellie Bradshaw will let us into the secrets of biofeedback – a unique method of pouch-emptying. Ellie, who is based 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!

See this publication by Ellie Bradshaw and Brigitte Collins – “Bowel dysfunction: “The comprehensive guide for healthcare professionals.”

Advances in laparoscopic approach to pouch surgery

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

Janindra Warusavitarne, a consultant colorectal surgeon at St Mark’s Hospital, is a pioneer in laparoscopic surgery (sometimes known as keyhole surgery). Janindra, who is a patron of Red Lion Group, will compare the laparoscopic approach with the more traditional open surgery techniques.

About Mr Janindra Warusavitarne

Mr Janindra Warusavitarne, is a Consultant Colorectal Surgeon, specialising in intestinal failure, inflammatory bowel disease, Anal fistula, haemorrhoids and colorectal cancer.

He is the lead surgeon for inflammatory bowel diseases at St Mark’s Hospital, London, an honorary senior lecturer at Imperial College and conjoint senior lecturer at the University of New South Wales. He is part of the executive team conducting the European Board qualification for colorectal surgery and a visiting scientist to the Garvan Institute of Medical Research. In addition he sits on the education committee of the European Society of Coloproctology.

Janindra is considered a key opinion leader and innovator and has been involved in many new procedures such as video assisted fistula treatment and laser treatment for haemorrhoids and anal fistula.

Mr Warusavitarne relocated from Australia in 2010, when he was offered an appointment at St Mark’s Hospital in Harrow, a national and international referral centre of excellence for intestinal and colorectal disorders.

After completing his surgical training, Janindra undertook full-time research (focusing on the genetics of colorectal cancer) and was awarded a PhD from the University of Sydney, Australia. He has extensive experience in minimally invasive surgery and has been innovative in developing minimally invasive surgical techniques.

Date/Time: Tuesday 16 May 2023 at 7:30 pm (London Time)

St. Mark’s Hospital, Pouch nurses

Date/Time: Wednesday, 24 May 2023 at 7:30 pm (London time).

Presentation and Q&A with St. Mark’s Hospital award winning pouch nurse team. As you may have seen in a recent post, St Mark’s Consultant nurse Zarah Perry-Woodford was named Nurse of the Year in the BJN awards, and the members of Zarah’s team, lead nurse Petya Marinova and pouch/stoma nurse, Rali Marinova won silver in the BJN awards Stoma Nurse of the Year category.

Their talk will cover

Pouch Nursing Service – new trends
Innovation in Pouch Care and
Ongoing support

This will be followed by a Q&A session. You will be invited to ask any questions in the meeting, but if you prefer, or wish to remain anonymous, you can submit questions by email to info@pouchsupport.org

Kapil Sahnan – Consultant Surgeon, at St. Mark’s Academic Institute.

Kapil Sahnan – Consultant Surgeon, at St. Mark’s Academic Institute.

Date/Time: Thursday 22 June 2023 at 7:30 pm (London Time)

Jason Bacon, latest research into robotic surgery

Jason Bacon is the CEO of St. Mark’s Hospital Foundation

Date/Time: Wednesday, 5 July 2023 at 7:30 pm (London time)

A team led by Professor Omar Faiz, St Mark’s Hospital’s clinical director, has been pioneering a research programme into robot technology, financially backed by a St Mark’s Hospital Foundation fundraising campaign. In this talk, Jason Bacon (CEO of St. Mark’s Hospital Foundation) will give an update on this fascinating project.

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

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

Date/Time: Thursday, 10 August 2023 at 7:30 pm (London time)

In her August webinar, Uchu Meade will be discussing the best recommended medications for pouch patients and the latest pouch related developments in pharmacy.

Details of further Red Lion Group webcasts for 2023 will be added in due course.

Attend our regular monthly J-pouch forum on zoom

See report on most recent meeting below from RLG Chairman David Davies (Updated 7 December 2022)

Our regular monthly pouch forums take place on the first Monday of every month at 7:30 pm (London time) on Zoom. Meet online with other pouchees for friendly pouch related chat!

If you have a pouch or are considering pouch surgery, and have not attended one of our regular pouch forums, then you are missing a fantastic opportunity to “meet” with other like minded individuals, to discuss and compare pouch related experiences and challenges.

We welcome regular and new attendees, ranging from people with “new” pouches, “old” pouches and “yet-to-be” pouches. (Two of our regular attendees have pouches over 40 years old, and were number 9 and 10 of the first pouches ever created!). We have attendees from all over the UK and some from further afield, including Europe and North America.

Subjects discussed are varied, including diet, medication, leakage, butt-burn, frequency, travel, catheters, recommended blood tests, dehydration…the list is endless. All those delicate subjects that you may not wish to discuss elsewhere,

The reality is that we are still a rare breed, and a common reaction from first time attendees is that they have never previously met or had the opportunity to talk to someone else with a pouch. A quote from one attendee “Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“.

So don’t be shy! Go to pouchsupport.org/events or click below to register for the next scheduled pouch forum.

Updated 7 December 2022

The last RLG pouch forum of 2022 took place on Monday 5 December with approximately 20 pouchees dialling in for an enthralling zoom session. These informal chat events have become a regular in people’s diaries and it was good to see so many familiar faces and a few new faces too. The discussions were wide-ranging and focussed on real pouch problems and their resolution. The topics included:

Vitamin B12 deficiency and a GP letter to get testing and treatment for pouchees
Access to the St Marks pouch nurse specialists for pouch-related advice
Symptoms and treatment for blockage
When you should go to hospital with a blockage
Prevention / reduction of gas
Food supplements and whether they work or not?
Probiotics for treatment of pouchitis?
Use of catheters and/ or warm water flushing for complete pouch emptying
How to reduce or stop having to get up in the night for a pooh
Foods to avoid for Christmas dinner!

There were lots of solutions, including one pouchee who had turned around a problematic pouch with a strict regime of pouch care, including a warm water enema to (further) liquidise the pouch contents in the morning and at night, using a medina catheter to fully empty, 2 sachets of Vivomixx per day (other probiotics are available) and green tea supplements (for their apparent anti-inflammatory properties). Not only is his pouch now healthy, but his doctor complimented him on having the healthiest looking pouch he had ever seen!!

Time ran out for the last topic of the day, which was how to avoid night time leakage and seepage, so we will discuss this at the next RLG zoom forum, which will take place on Monday 9 January 2023. Attendance is free, but please remember to register beforehand at pouchsupport.org/events to receive the link to join.

Wishing you all a Happy Christmas and a healthy and prosperous New Year, looking forward to meeting again on the 9th January.

David Davies
RLG Chairman

Attend IA Pouch Information Day featuring Richard Lovegrove

Attend IA Pouch Information Day on 21st January featuring Richard Lovegrove

The J Pouch subgroup of the UK Ileostomy Association (ia) is hosting an information Day on Saturday 21st January 2023 at Jury’s Inn, Birmingham

FREE for anyone living with, or considering, an internal pouch, this event has guest speaker, colorectal surgeon, Richard Lovegrove, along with other esteemed speakers.

Topics will include:

J Pouch surgery and who is suitable Pre and post op care
Diet and nutrition for J Pouch patients
J Pouch complications
J Pouch follow up
and much more…

Book your FREE place now!

Simply email: internal.pouch@iasupport.org

Includes interactive Q&A sessions and social chats with fellow ‘pouchies’.

You can download the official poster below:

IA Information day 2023 Poster

Download Now!

Kangaroo Club Information Day 2022

Our sister Pouch Support group, The Kangaroo Club based in Oxford, has announced that it will be holding an in-person Information Day. Please see copy of their official announcement below.

I am delighted to let you know that the Kangaroo Club Information Day 2022 will be taking place on Saturday 8th October at Jury’s Inn, Oxford.

Following questions about it at last year’s Information Day, the theme of the day will be pouch longevity and given the very positive feedback about last year’s venue, we are again holding the Info Day at Jury’s Inn.

All are welcome – those with pouches (well behaved or not), those considering pouch surgery, all supporters… – and the event is free (although if you can afford it a donation of £10 per person in your party would be gratefully received).

Please put the date in your diary and let us know if you (and whoever else you would like to bring) are planning to come, by e-mailing info@kangarooclub.org.uk.

For more information and updates about the programme being planned for the day please click HERE

Ileo-anal Surgery – A Guide for Patients

Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

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 participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

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

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

Now the sun is shining, clocks going forward this weekend and just a little over 3 months until the walk, it’s time to dust off your walking shows, start your training and register your intention to take part in this fun event.

Stop Press! Griffin Institute will be offering a prize of a £75.00 Waitrose/ John Lewis gift voucher to a lucky winner who signs up before the end of the Easter holidays – Tuesday 19 April. (Winner to be drawn from a hat, to include people that have already registered).

Red Lion Group is joining one of the fundraising events of the year – the London Bridges Walk!

The event – on Sunday, 26 June 2022 – is over 13 miles – or if you prefer 6.5 miles – and covers 10 of London’s iconic Thames bridges from Putney Bridge to Tower Bridge.

Everyone is welcome to take part – families, children and pets – and if London is too far out of your way we are also running a virtual event which you can complete wherever you are based.

The walk is being organised by the Griffin Institute – a charity linked to St Mark’s Hospital – and the money raised will help fund Red Lion Groups services and St. Mark’s Hospital research projects.

You can REGISTER at the London Bridges walk homepage HERE and download the event e-flyer below.

Look forward to seeing you there!

London Bridges Walk 2022

Download Now!

J Pouch Forum update

J Pouch Forum Update

The first RLG pouch forum of the year took place on Monday 7^th February and what a welcome return!

Some 30 or so pouchees dialled in from the comfort of their own homes to chat informally about pouch-related stuff, to share experiences and suggest solutions and to realise that we are all part of a special community. Brilliantly chaired by softly spoken Chris Browne, who gently lights the blue touch paper and then sits back and lets us chatter away, whilst ensuring that everyone gets the chance to speak and be heard. The audience was mixed, with new and old pouchees, regular attendees and newcomers. But, as always, the warmth and sense of community was as strong as ever.

Topics covered in a thoroughly riveting 98 minutes included nutrition, overnight frequency and seepage, use and availability of catheters, vitamin B12 and D deficiency, the challenge of educating GPs about pouches, pelvic floor exercises, peristalsis, full emptying, absorbent pads, loperamide, local pouchee meetings and many other topics. Gary Bronziet was pressing all the right buttons once again, despite being in hospital recovering from pouch-related surgery (adhesiolysis). And RLG Trustee Theresa Parr was on hand to add reassuring and learned comments, as ever.

The time flew; Chris drew the evening to a close at 9.08pm but one felt it could have gone on for an hour longer. A terrific evening for anyone with pouch-related questions or concerns, or those just wanting to be reminded they are part of this special pouch community. As one newcomer commented “we all look pretty normal!”

The next RLG forum will take place on Monday 7^th March and thereafter typically on the first Monday of every month. Please register in advance at https://pouchsupport.org/events/ to get your log in details and to keep track of other upcoming events.

David Davies

RLG Chairman

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 was held on ZOOM and featured a number of guest speakers on a variety of Pouch and Stoma related subjects and provided the opportunity to put questions directly to the nursing team.

Recordings of the Sessions are now available. See Below.

RECORDING DETAILS

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

To view recordings of the sessions click HERE

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!

The London Bridges Walk 2022

We are delighted to have been invited by the Griffin Instiutute to participate in their annual London Bridges Walk fund-raising event. Save the Date – 26th June 2022. For further information and how to register, see below.

To pre-register and guarantee your place, please send a brief email to the Griffin Institute Fundraising Events Manager, Ian Tate – i.tate@griffininstitute.org.uk.

IBD Patient Day (Celebrating World IBD Day) at St.…

IBD Patient Day (Celebrating World IBD Day) at St. Mark’s

New season of J-Pouch webcasts announced for 2023

New season of J-Pouch webcasts announced for 2023

Ileoanal pouch formation and revisional surgery for pouch problems

Biofeedback and other techniques to help you empty your pouch

Advances in laparoscopic approach to pouch surgery

St. Mark’s Hospital, Pouch nurses

Kapil Sahnan – Consultant Surgeon, at St. Mark’s Academic Institute.

Jason Bacon, latest research into robotic surgery

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

Attend our regular monthly J-pouch forum on zoom

Attend our regular monthly J-pouch forum on zoom

Attend IA Pouch Information Day featuring Richard Lovegrove

Attend IA Pouch Information Day on 21st January featuring Richard Lovegrove

Kangaroo Club Information Day 2022

Kangaroo Club Information Day 2022

Ileo-anal Surgery – A Guide for Patients

Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

J Pouch Forum update

J Pouch Forum Update

Stoma and Pouch Care – Virtual information day

The London Bridges Walk 2022

The London Bridges Walk 2022

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