News Archives

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 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 Red Lion Group (RLG) J pouch forum took place on Monday 5^th February and was chaired as usual by RLG Chairman David Davies, ably assisted by Gary Bronziet, RLG Membership Secretary. There were 20 attendees, a mixture of familiar regulars and a smattering of new pouchees and potential pouchees who were joining for the first time. The sessions take place via the online meetings platform Zoom, which means people attend from the comfort of their own home and from anywhere in the world. Indeed, on this occasion, we had two attendees dialling in all the way from the USA.

The sessions are informal and are not recorded or minuted – anything said in the zoom stays in the zoom. This helps to put people at their ease to share personal details of their pouch experiences and issues. It is a friendly and very supportive group and many of the attendees gain valuable insights and support as well as comfort to know that they are not alone.

The topics are suggested on the night and there is usually a smattering of common pouch themes. On this occasion it was a packed agenda with topics discussed including

Managing blockages
Tactics to prevent night-time toilet trips
Osteoporosis and pouches
Vitamin D deficiency in pouchees
Post-op recovery time before driving and lifting weights (presumably not at the same time!)
Tactics to thicken up pooh
Tactics to avoid leakage especially at night
All things wind
And finally, we had a potential pouchee on the call who asked the question – whether or not pouch surgery had been a good decision?

These topics generated lots and lots of comment and discussion as you can imagine – so much so that we ran out of time to discuss wind. So that topic will be number one on the list for next month’s meeting, along with other pressing pouch-related topics, I’m sure.

The next zoom pouch forum will take place on Monday 4^thMarch, starting at 7:30 pm. Attendance is open to all, but please register beforehand to receive the meeting link. You can find the registration link and details of other upcoming events at pouchsupport.org/events/ or tap on button below.

Events

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

David Davies
RLG Chairman

Covid-19 related GI symptoms in ileoanal pouch & stoma…

Covid-19 related GI symptoms in ileoanal pouch & stoma patients

The St Mark’s Hospital Stoma and Internal Pouch care team is in the process of conducting a study on gastrointestinal effects of Covid in stoma and pouch patients and they have asked us to share the link to their online survey.

See the link below for further information and to take part if you choose to do so.

Survey

St. Mark’s hospital foundation seasonal appeal

“The Red Lion Group is delighted to share the virtuous circles seasonal appeal on behalf of Jason Bacon, CEO St. Mark’s Hospital Foundation”

In this seasonal appeal, we have sought to demonstrate the cumulative effect of one thing inspiring another and the impact of things coming full circle, ultimately for the benefit of patients living with complex bowel diseases.

We hope you will feel inspired to renew your support or donate for the first time. Acts of giving will help us continue our virtuous circles, enabling us to support today’s patients whilst maintaining a focus on activities that will bring forward our vision of a future free from the fear of bowel disease.

Thank you sincerely.

Wishing you and yours a healthy and happy festive season and New Year.

Kind Regards

Jason Bacon
CEO, St. Mark’s Hospital Foundation

You can download the Virtuous Circles seasonal appeal leaflet below and read about how the “virtuous circles” concept enables St. Mark’s to keep at the forefront of innovation and care for patients with all forms of bowel disease.

St. Mark’s Hospital Foundation – Virtuous circles

Download Now!552 Downloads

You can donate on the St. Mark’s Hospital Foundation JustGiving page by clicking on image below…

Another award for the St. Mark’s Hospital Pouch nurse…

Another award for the St. Mark’s Hospital Pouch nurse team!

We are delighted to announce that Petya Marinova – Lead Nurse Pouch and Stoma Care, was presented with the Healthcare Honours, New Talent Award, 2023. The awards ceremony was held at the Houses of Parliament on Thursday evening, 23^rd November, showcasing NHS leadership and management roles.

The New Talent award shortlisted individuals with up to 5 years of experience in a leadership or managerial position who had shown remarkable potential as a leader and made outstanding contributions to their organisation, either on their own projects or in support of colleagues and/or more senior leaders. The nominee could be in a clinical or non-clinical leadership role, which provided some stiff competition but Petya claimed the prize for us all. We are so proud of her.

The Stoma/Pouch Management Team – Zarah Perry-Woodford and Petya Marinova were also shortlisted and Highly Commended for the Improving Outcomes: Management Team Award which highlighted an NHS management team, from any specialism or area, that made active improvements with a demonstrable impact on outcomes within (or even beyond) their area of responsibility.

They were also shortlisted for the Nursing Times Workforce Summit 2023, Best Use of Workplace Technology but sadly we didn’t get gold this time!

Left to right – Zarah Perry-Woodford, Rali Marinova, Petya Marinova and Athira Kunnumpurathu

For further information about British Journal of healthcare Honours see https://www.healthcarehonours.com/

Diagnosis and treatment of pouchitis

Overview

This article describes the process for the diagnosis and treatment of pouchitis as recommended by St. Mark’s hospital, London – the UK National bowel hospital.

Symptoms

A small percentage of people with a j pouch will at some stage experience pouchitis. [The incidence of pouchitis is 20% at one year and up to 40% at 5 years. 10 to 15% of patients with pouchitis experience chronic pouchitis, which is classified as either ’treatment responsive’ or ’treatment refractory’. ¹]

Symptoms of pouchitis are not dissimilar to those experienced by patients whose original diagnosis was ulcerative colitis (UC). For example, abdominal pain, cramping, increased frequency, urgency and bleeding.

Diagnosis

Initial diagnosis is based on advanced history taking and assessment of symptoms. This is why it is important that patients speak to someone experienced in pouches, as otherwise they risk being misdiagnosed. Blood tests and pouchoscopy may be considered subject to the history taking and assessment findings.

Treatment

In most cases pouchitis responds well to antibiotics. [two weeks Ciprofloxacin and metronidazole are the most commonly used, often generating a rapid dramatic response. ¹] This may be followed up with further four weeks of antibiotics if not resolved or rapid relapse.

In the event that symptoms are not responsive to the antibiotics, investigations into alternative possible diagnosis would be carried out.

For the complete treatment algorithm, including the treatment of chronic pouchitis, refer to the St. Mark’s hospital Suggested Treatment Algorithm below.

*With acknowledgement to Jonathan P Segal, Nik S Ding, Guy Worley, Omar D Faiz, Susan K Clark, Ailsa L Hart*

You can download a copy of the treatment algorithm below :-

Protocol for the treatment of pouchitis

Tap to Download1603 Downloads

References:

¹ From the paper “Systematic review: management of chronic refractory pouchitis with evidenced based treatment algorithm” published on Research gate.

You can read the actual paper on Research gate by clicking here or the image below.

Attend our regular monthly J-pouch forum 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!“.

Updated 16 November 2023

The latest of the RLG zoom pouch forums took place on Monday 6th November. These popular and informal get togethers have been taking place since July 2020 and attract a regular crowd plus some returnees and a few new people. There is no agenda or script; the topics are decided on the night depending on whatever people want to discuss. The ambience is welcoming, relaxed and supportive and acknowledges the fact that pouchees are rare, we have been through a lot, and we share a common bond.

The November forum considered pouch-related issues as diverse as :-

frequency of pouchoscopy
treatments for pouchitis
what to say to medical professionals who are not familiar with the pouch
the benefits of the newer “biologics” medicines
natural cures for pouchitis.

There was an amusing explanation of “pebble dashing” for our American friends who are regular attendees (they understood immediately) and a regular slot from a gentleman who had his final take down operation some three months ago and is keeping us updated on his challenges as his body adapts to its new plumbing.

Finally, and perhaps most gratifying, there were two people considering pouches and who asked whether we would choose a pouch if we had our time again – which led to some excellent reflections on quality of life with a pouch.

These meetings are friendly and supportive and make for a relaxed hour or so with other pouchees to discuss serious and not so serious pouch-related topics – all from the comfort of your own home.

The next meeting is on Monday 4 December at 7:30 pm and pre-registration is essential (see link below) to receive the dial in detail. Hope to see you then!

“This being the last RLG zoom of the year, and being the festive season too, the attendees are encouraged to wear their xmas hats and jumpers etc. and have a suitable beverage on hand for a festive toast!”

See pouchsupport.org/events/ for details of all events or click image below to register.

David Davies
RLG Chairman

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

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 to register for the next scheduled pouch forum.

Meet St. Mark’s award winning pouch nurse twins

Meet the St Mark’s twins who have identical careers – and awards

Next time you visit St Mark’s Hospital pouch nurse department you may think you are seeing double! Read a profile of the famous St. Mark’s Hospital pouch nurse twins.

Christoper Browne, Roar! editor writes…..

Petya and Rali Maranova. Their names may be different but that’s probably the only feature the two St Mark’s Hospital stoma and pouchcare nurses don’t have in common. Almost everything else about them is identical.

The twins were both born and brought up in Bulgaria and while they were at school their parents moved to Italy, the intrepid duo later joining them and then jointly deciding to train as nurses.

“We always liked the idea of nursing and our parents kept encouraging us to consider it as well as they thought it would be a great fit for us,” says Petya.

So the twins studied for their nursing degrees while they worked on the wards of local Italian hospitals. “Almost as soon as we started our clinical placements we knew that we wanted to look after stoma and pouch patients,” adds Petya.

Their next move was to Ireland where they worked on several general surgery and colorectal wards, commuting to Italy’s world-famous Padua University to study for their masters’ degrees in stomacare and incontinence rehabilitation. Both were awarded honours degrees.

Two years ago [in 2019], after spending a year in the urology ward of a London hospital, the twins joined St Mark’s Hospital – Rali as a specialist stoma nurse and Petya as a specialist pouch nurse [She is now the hospital’s lead nurse for pouch- and stomacare].

“Joining St Mark’s has been an incredible opportunity and a dream of ours, and we couldn’t be happier to be part of this amazing place and especially our team – with everyone always being very welcoming, supportive and caring,” the twins said.

“We have gained great experience in looking after stoma, enterocutaneous fistulae and pouch patients on both acute wards and in nurse-led clinics as well as participating in research, department audits, protocols development and in-house staff education,” they said.

The twins recently gained national recognition when they won the silver medal in the 2023 BJN (British Journal of Nursing) awards in the Stoma Nurse of the Year category and gained four nominations and a “highly commended” in the 2022 Nursing Times and Association of Stoma Care Nurses awards.

Petya commented: “This is a joint team silver – or runners-up medal – for the St Mark’s stoma- and pouchcare team. We are very proud of this achievement and hope to continue doing amazing nursing work for all our patients.”

But how do this incorrigible pair cope when hospital staff, patients and families can’t tell one from the other and mix up their names and identities? “I think it was confusing for our colleagues at first, but now they can tell us apart – most of the time,” quips Petya.

The Bulgarian-born sisters have identical interests too. At their home near the hospital, they have a small menagerie of pets, enjoy a mutual love of baking and are fanatical Liverpool FC supporters.

Petya & Rali with the St. Mark’s Pouch Nurse team at BJN awards ceremony.

A version of this article first appeared in the Summer 2021 issue of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.

Do I need to take the NHS bowel screening…

Do I need to take the NHS bowel screening (FIT) test if I have a J pouch?

The NHS in England invites people over 60 to take part in a bowel screening programme and you may have received an invitation to participate. The test requires you to send a poo sample and the test is called a faecal immunochemical test, or ‘FIT kit’ for short. The test detects blood in your poo (blood you would not notice by eye).

However, people with an internal ileoanal pouch (j pouch, w pouch etc) do not have a colon. So, is bowel screening necessary or relevant?

I have raised this question and been advised by respected colorectal consultants and the St. Mark’s pouch nurse team that the test is NOT relevant for anyone with a pouch and, if you have a pouch, you may safely decline. Of course, taking the test itself will do you no harm, but the results will be meaningless and misleading.

If you are in doubt, discuss with your own colorectal team.

See https://www.gov.uk/government/publications/bowel-cancer-screening-benefits-and-risks/nhs-bowel-cancer-screening-helping-you-decide for details of the test, but this article makes no reference to the significance of having a j pouch.

New FAQs page on website and more speed!

Visit our new FAQs page for answers to some of the most commonly asked questions from people with, or considering J Pouch surgery.

You can find the link to it on the menu bar at the top of the screen on a PC, or in the drop down menu on a phone. See image below.

On a smart phone, click on the horizonal lines at the top right corner to see the menu bar.

You can also find it at this URL: pouchsupport.org/faqs/

In other website news, we have upgraded the service with our internet service provider, and hopefully you should be experiencing this in much improved response time.

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

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

J pouch forum update and register for next event

J Pouch forum update and register for next event

Covid-19 related GI symptoms in ileoanal pouch & stoma…

Covid-19 related GI symptoms in ileoanal pouch & stoma patients

St. Mark’s hospital foundation seasonal appeal

St. Mark’s hospital foundation seasonal appeal

Another award for the St. Mark’s Hospital Pouch nurse…

Another award for the St. Mark’s Hospital Pouch nurse team!

Diagnosis and treatment of pouchitis

Diagnosis and treatment of pouchitis

Overview

Symptoms

Diagnosis

Treatment

References:

Attend our regular monthly J-pouch forum on zoom

Attend our regular monthly J-pouch forum on zoom

Updated 16 November 2023

Updated 7 December 2022

Meet St. Mark’s award winning pouch nurse twins

Meet the St Mark’s twins who have identical careers – and awards

Do I need to take the NHS bowel screening…

Do I need to take the NHS bowel screening (FIT) test if I have a J pouch?

New FAQs page on website and more speed!

New FAQs page on website and more speed!

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