Kangaroo Club Information Day 2026

The Kangaroo Club held their annual Information Day in Oxford on Saturday 10 October, with the theme of “The Big Picture”. Chair Laura Dunn and her team had once again put together an interesting and varied day for some 40 or so pouchees, potential pouchees and their partners. There were also representatives from RLG and from the IA pouch sub group; one of the very few occasions when all three UK charities get together.

Pouch nurses Simon Turley, Angie Perrin (Salts Healthcare), Fran Woodhouse and Jodie Paynton with RLG Chair David Davies

This was a particularly pertinent event for Laura, who was stepping down as Chair after 40 years at the helm along with Secretary Emma Harris. Laura set the charity up some 40 years ago when her surgeon, Professor Sir Neil Mortensen, suggested it would be a good use of her time! Since then, the KC charity has provided much needed support to pouchees and potential pouchees and Laura has been right at the heart of this.

KC President is Kat Baker, an eminent and experienced pouch surgeon at the John Radcliffe Hospital. Kat and colleague Mr Ed Dickson spoke about recent advances of interest and relevance to pouchees:

Improvements in medical imaging to produce sophisticated 3-dimensional computer models of “problem” pouches to enable accurate surgical correction

Greater precision and better outcomes with robotic surgery and the use of a single “port” instead of a 4-port tool, which means even less scarring and reduced risk of adhesions and stenoses. Amazing that the pouch surgery can now be carried out with the aid of robots and through a single keyhole in the patient’s abdomen!

Early data to show that young people with severe inflammatory bowel disease have high levels of a particular antibody (Anti-IL-10). This deepens our understanding of the mechanism of inflammation in the body and could lead to cures for IBD and also possibly for pouchitis.

The increasing use of social media by young people to find information, treatments, specialist doctors etc. Ed quoted amazing statistics that 97% of IBD patients go online every day and 22% of youngsters with IBD are members of an Instagram support group. Ed made the point that there was an increasing need for clinician-derived, informed, trustworthy and ethical content to be generated and posted online to inform and advise patients. There was also a message for RLG and others to think about an Instagram page as part of their online platforms to attract and appeal to younger pouchees. In general young people were reported to be “desperate” to have a pouch and to avoid a stoma. They tend to do well through the surgical part of the journey and then disappear from follow up to get on with their lives.

Consultant Gastroenterologist Lulia Al-Hillawi spoke about the pouch microbiome – the community of bacteria that live and thrive in the pouch. The small intestine has very low bacterial colonisation in people with an intact bowel, but over time the pouch develops a complex bacterial community (the microbiome), mimicking to a degree the microbiome of the large intestine in healthy people. There are 3,000 different species of bacteria in the pouch, including some that are implicated in causing pouchitis. Dr Al-Hillawi talked about manipulation of the pouch microbiota through diet and probiotics; a wholefood diet is the best diet for a pouch and processed food is to be avoided. The Fodmap diet was considered good for pouchees to improve function and Luila felt there were benefits in taking probiotics for conditions such as pouchitis. There are no proven benefits for taking pre-biotics to avoid or treat pouchitis.

Kat Baker and Lulia Al-Hillawi have agreed to produce webinars for RLG in 2027, so keep a look out on facebook and on the website and in Roar for announcements of the 2027 webinar program.

There were also presentations by Sarah Cripps, Consultant Pharmacist in Gastroenterology at Oxford and Dr Alexa Duff, Clinical Psychologist on the Gut : Brain connection. Some of you might remember Dr Duff, who produced a webinar for us during 2026 which is available to download on the website and on our YouTube channel. Committee member Ruth Cox gave an entertaining and very personal account of her own pouch journey with 5 steps to pouch and whole body well-being. Finally, the pouch nurses at Oxford, plus Angie Perrin of Salts Healthcare hosted an open Q&A session, with delegates asking detailed questions and benefitting from the wise words of these experts with some 60 years of pouch nursing experience between them.

The icing on the cake was the emergence of five new volunteers expressing an interest in becoming Committee members and expressions of interest for the Chair role.

David Davies
RLG Chairman

Inspirational stories of living with a J Pouch

Living with a J Pouch proves no barrier to living a full and active life. In this post we share some inspirational stories from Red Lion Group members.

J pouch no barrier for this marathon man

Crossing the line in his 11th Frankfurt Marathon, David Skinner is smiling, not just because he is about to cross the finish line, which is reason enough, but because his old friend Jo Schindler, the race director, is standing there with open arms, ready to embrace him. “Mein Gott, I love the Frankfurt Marathon“, said David Skinner.

**David Skinner completing his 11th Frankfurt marathon**

David Skinner, pouchee and Red Lion Group commitee member, has had his J pouch since 2009. He is a keen runner and at the age of 70 this, his 11th Frankfurt marathon, is actually his 27th marathon overall. If you need further inspiration, David commented that the man who came in behind him in this event was aged 86!

You can read a further story about David’s running exploits in ROAR! Issue 68: Spring 2025 below.

ROAR – Issue 68: Spring 2025

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Life time achievement award for Prof John Nicholls

A proud moment for Professor John Nicholls who was honoured with a Life Time Achievement award in recognition of his outstanding contribution to the field at the recent #escp26 (European Society of Coloproctology) conference in Prague.

Many of you will have personal experience of the great man and we are proud to have him as a patron of the Red Lion Group.

Professor John Nicholls receiving his Life Time achievement award at #ESCP26

To appreciate John’s outstanding professional career, you can do no better than to look at his Wikipedia entry at https://en.wikipedia.org/wiki/John_Nicholls_(surgeon).

For a better insight into the man, I have found in our Roar! archives an interview with him which featured in Roar! Issue #6 in 1997, on the occasion of John Nicholls appointment as Professor at St. Mark’s Hospital. As Christopher Browne noted at the time, “honour after honour is being heaped on the distinguished head of Red Lion Group President Mr John Nicholls. Not only was he appointed St Mark’s hospitals clinical director in June earlier this year, he has now been made Professor of Coloproctology. The honour marks the successful merger between St Mark’s Academic Institute and London University’s Imperial College School of Medicine“.

You can read the full aricle below.

A Man of the People

When CHRISTOPHER BROWNE interviewed Mr John Nicholls, president of the Red Lion Group, he found that there’s more to the great man than simply building pouches.

Surgeons are men of power. Their role is to save lives and livelihoods. Such eminence can make them detached and aloof from their patients. John Nicholls is not like that. After my colectomy, he left an exciting Saturday afternoon’s rugby match to see how I was. On another occasion, he gave me advice only minutes after carrying out important surgery.

His patients are of one voice. John Nicholls is a People Surgeon, a rare and protected species, a man who listens to his patients before and after operations. When I saw him recently, it was a balmy spring morning. I felt relaxed and light-headed. Illness could not be further from my mind.

Waiting in his St Mark’s office is like poring over the science section of a library, its walls alive with scholarly and eclectic works. It is a calm and tranquil setting, soothing enough to settle the nerves of the most anxious patient.

When John arrives, he is immaculately dressed in pinstripe suit and elegant tie. He gives me one of his twinkling smiles and makes amusing comments about the day’s news headlines.

I forget about operating theatres, intestinal tracts and NHS problems as he spirits me away into realms of medical mystery and suspense.

John is one of the pioneers of the ileo-anal pouch. He was St Marks’ resident surgical officer when Sir Alan Parkes created this modem, medical miracle. Sir Alan, with John’s assistance, took it through its embryo stages, carrying on the work of Professor Bryan Brooke who developed the spout-ileostomy in Birmingham in the 1950s.

Says John: “Sir Alan was a remarkable man with a wide-ranging mind who could have been a pioneer in many fields. I was aware that I was with a master pushing back the boundaries of surgery.“

The work was both challenging and dangerous. “When you are carrying out pioneering surgery, you know there is a chance someone may die and that you, the surgeon, will be held responsible,” says John.
The pouch was developed without serious mishap however, and by 1978, had become a revolutionary option for colon surgery patients. When Sir Alan died in 1982, John continued the mould-breaking work.

John Nicholls is disarmingly modest for a medical pioneer. he rarely talks about himself and speaking to him is like interrupting an episode of Radio Four’s “Any Questions”. He has a questing mind, interested in everything around him from classic cars to macroeconomics.

He has fitted over 1,300 [See footnote below] internal pouches – more than any other surgeon – and he is almost certainly the only top British surgeon to go to work on a 1000cc BMW motorcycle. When St Mark’s was based in London’s City Road, John could often be seen threading his way through the city traffic on his green BMW. Little did the hospital’s daily throng of visitors realise that the man in golfers’ waterproofs striding down the corridor was about to perform delicate deeds on their relatives’ anatomies!

John’s latest hobby is less hazardous. He likes going for long walks with his wife Stella in the attractive wood around their Regent’s Park home.

When they go abroad, the Nicholls’ often explore the mountains and valleys near their Alpine apartment on the French/Swiss border. They can afford to be adventurous for should they lose their way, John can ask directions in four languages – German, Italian, French and English.

It is often said that mathematics and music go together. Music and medicine is a rarer blend however. Enter John Nicholls. Twenty years ago he played the viola in London’s Salamon Orchestra under Andrew Davis, who later became the famous Last Night of the Proms conductor.

Not surprisingly, perhaps, John dismisses his musical talent as “no better than a jobbing member of a string quartet“.

John Nicholls is an optimist. Not only is he convinced the main cause of ulcerative colitis will be found in the next 25 years, he is also excited about recent small intestine research carried out in the USA.
While he was Dean of St Mark’s, he helped oversee the recent merger between the hospital’s Academic Faculty and the research department at Imperial College, London.

Now, apart from his role as St Mark’s clinical director, John Nicholls continues to live life in the fast lane, performing operations, seeing and advising patients, lecturing, writing, serving on advisory committees, and sparing enough time to preside over a certain pride of Red Lions.

This article appeared in Roar! Issue Number 6, published in Autumn 1997. If you are a Red Lion Group member, you can read ALL of the back issues of Roar! on the Red Lion Group website HERE

Footnote: By the time Prof Nicholls retired he is said to have created over 3,000 pouches, probably more than anyone in the world. I had mine by him in 1987 and I can testify to him zooming between his patients (some at St. Mark’s and The London Clinic) on his BMW motorbike! I also recall him visiting me late one night in full evening attire being on his way back from a black-tie event in London, though not sure that he was on his BMW on that occasion! GB

Do the new GLP-1 “slimming” drugs deliver better pouch…

Do the new GLP-1 “slimming” drugs deliver better pouch performance?

By Red Lion Group Chair – David Davies

There have been some expansive statements about GLP-1 drugs on the J-pouch support (UK specific) Facebook forum; These sentiments and outcomes are echoed in the monthly pouch zoom forums where we occasionally hear personal testimonies from contented (and thinner) pouchees. But what are the facts behind GLP-1 use in pouchees and can the above statements be supported by real world evidence?

QUOTES FROM FACEBOOK GROUP MEMBERS
“Best 5 weeks of my life…”
“Frequency reduced from 20 times per day to 2 and from 4-6 times a night to once”
“Lost 32lbs, definitely slows the pouch output down”
“It’s slowed my pouch right down, I’d even go so far as to say I feel normal again for the first time in 25 years”

What are GLP-1 drugs and how do they work?

Glucagon-like peptide-1 (GLP-1) is a naturally occurring hormone that helps regulate blood sugar and appetite. It works by stimulating insulin secretion, inhibiting glucagon secretion, and promoting a feeling of fullness, which can help with weight management. Synthetic versions of GLP-1, full name GLP-1 receptor agonists, are prescribed in the UK for patients with type 2 diabetes and obesity, but the qualifying criteria are strict.

The most well-known brands are Mounjaro, Wegovy and Ozempic, but there are potentially many more molecules on the way – 124 in development according to one industry online platform (Fierce Biotech). Every drug company, it seems, wants a GLP-1 product in their portfolio.

Are they safe?

These class of drugs are generally considered safe. Common side effects include nausea, vomiting, diarrhoea and constipation. There is also a concern about long term effects, so people with a history of pancreatitis, for example, would be unlikely to be prescribed a GLP-1. And there are concerns that patients regain weight quickly if and when they stop taking the drug. In the UK the drugs are only available with permission from a medical doctor, who will issue a prescription only if the patient satisfies the rigorous eligibility criteria.

What are the benefits of GLP-1 drugs for pouchees?

GLP-1 drugs show promise in reducing the number of toilet visits for pouchees as well as encouraging weight loss and helping to prevent diabetes. There is also a suggestion of an anti-inflammatory effect, reducing the risk of pouchitis potentially and contributing to good pouch health. Hence the interest of pouchees in trying GLP-1s to improve their health and quality of life. The detail is contained within two recent publications in prestigious, peer-reviewed medical journals:

Doctors at the University of North Carolina in America conducted a small clinical trial of GLP-1 in pouchees who had a high frequency of bowel movements but with a normal pouch (i.e., no inflammation). The outcomes were published in the American Journal of Gastroenterology in 2024. They treated 8 pouchees with the GLP-1 drug Liraglutide (trade name Saxenda) in a well-designed, placebo-controlled, double-blind, cross-over clinical trial and showed a 35% reduction in toilet frequency on treatment compared to placebo, a reduction in urgency and better stool consistency and the drug was safe and well tolerated. The average frequency prior to treatment was 12 per day, which reduced to less than 8 per day after 1-2 weeks treatment. Treatment took place for only 2 weeks, however; it would be interesting to see if these effects became more pronounced with a longer course of treatment in pouchees.

Perhaps even more persuasive (for the regulators) is the impact of GLP-1 drug on pouchitis (inflammation of the pouch). An important publication by Aakash Desai and colleagues from various US centres appeared in the Inflammatory Bowel Diseases journal in December 2025. This was a retrospective study evaluating the outcomes of GLP-1 treatment in obese pouchees, created due to ulcerative colitis, and who had a history of recurrent pouchitis. Forty three pouchees were followed and it was found that GLP-1 treatment resulted in a decrease in the risk of recurrent pouchitis from 53% to 26%, a decreased risk of 50%. Furthermore, pouchees taking GLP-1 drugs took less antibiotics and less anti-diarrhoeal medication. This study was small and retrospective, but the outcomes suggest that GLP-1 drugs could potentially have significant health benefits for patients with recurrent pouchitis in reducing inflammation and with consequential cost savings for the health authorities.

Such studies are small and insufficient, as yet, to convince the regulators to broaden the acceptable indications to include people with a pouch. Further clinical trials are required to define the benefits and risks of taking a GLP-1 drug in the pouch population. But these early reports are promising and might pave the way for more research on GLP-1’s in pouchees, which might ultimately lead to pouchees having access to GLP-1 drugs to help with routine pouch management.

Can pouchees get GLP-1 prescribed on the NHS?

There are no regulatory approvals as yet to support the prescribing of GLP-1s to pouchees per se – only to people with diabetes and/or obesity (whether or not they have a pouch).

If you are eligible for a GLP-1 because you have one or more of the conditions for which the drug is licensed then your GP/doctor might write a prescription. Having a pouch and wanting to reduce the frequency of bowel movements per day (for example) would not qualify a patient for a prescription according to the licensed indications.

Finally, to repeat our earlier disclaimer, the Red Lion Group supports the use of GLP-1 drugs only under appropriate medical supervision.

David Davies
RLG Chairman

J Pouch related live webcasts scheduled for 2026

The Red Lion Group schedules another series of live webcasts for 2026 featuring world renowned speakers on subjects of great interest to patients considering or having undergone J Pouch Surgery.

We are delighted to report we have another new speaker (for us!) this year – namely Dr Alexa Duff lead clinical psychologist specialising in IBD at St Mark’s Hospital and founder of the Gut Brain Connection (gutbrainconnection.co.uk).

As you may be aware, Red Lion Group began broadcasting live webcasts on Zoom during the COVID epidemic, when we were unable to host our regular in-person Information Day previously held at St. Mark’s Hospital. These have proved so popular that we have continued with this practice every year since, and this year is no exception with an exciting line-up of speakers as detailed below.

Samantha Evans and Lisa Allison

Wednesday 18th February 19:30 (BST)- Preparing for Pouch Surgery
Wednesday 29th April 19:30 pm (BST) – Managing Pouch Complications

A dynamic duo: Samantha Evans, nurse consultant for stoma- and pouchcare at St Mark’s Hospital, and Lisa Allison, clinical nurse specialist for pouchcare, who oversee the before and after activities of St Mark’s Hospital’s pouchcare and pouch operations. They will be presenting two joint Zoom webcasts on Wednesday, 18th February and Wednesday, 29th April respectively.

The two events are deliberately linked as the first will show the structure of the St Mark’s pouchcare nursing team and how they prepare patients for pouch surgery; while the second will highlight the hospital’s enhanced recovery post-operative process and how they manage pouch complications in the hospital’s Nurse-led clinics.

PS: Lisa Allison is a former chair of the Red Lion Group!

Dr Alexa Duff – Psychology and IBD

Wednesday 15th April 2026 at 19:30 pm (BST)

Dr Alexa Duff – Founder of the Gut Brain Connection

We are delighted to report that we have lined up an original and fascinating webcast by Dr Alexa Duff – lead clinical psychologist specialising in IBD at St Mark’s Hospital and founder of the Gut Brain Connection (gutbrainconnection.co.uk). Dr Duff will cover a rarely-discussed aspect of our lives as pouchees, that is whether mental problems are a possible cause of UC or Crohn’s disease and whether stress or anxiety are contributory factors in the day-to-day behaviour of pouches. She will also review ways pouch patients can cope with the stigma of problems with the bowel – at work, in social situations and in close relationships.

Other issues that she will cover include :-

whether patients are given enough support for the psychological effects of pouch operations refering to some of the issues she has experienced in her work at St Mark’s Hospital.
what changes she would like to see introduced before, during and after operations to help pouch patients deal with a very difficult period in their lives.

This promises to be a fascinating session so make sure of your place by registering below.

Kapil Sahnan & Orestis Argyrou – Improving counselling for patients considering surgery for ulcerative colitis

Wednesday 6th May 2026 at 19:30 (BST)

A joint presentation by Orestis Argyrou, Research Fellow in IBD & Colorectal Surgery at St Mark’s Hospital & Academic Institute and Kapil Sahnan, distinguished colorectal surgeon at St. Mark’s Hospital.

When patients with ulcerative colitis (UC) need surgery, this is in most cases a colectomy, removing the affected colon and resulting in an end stoma. This surgery effectively removes the disease, as UC is confined to the colon. After this, some patients choose to live with a stoma, while others consider further restorative surgery, most commonly in the form of an ileal pouch-anal anastomosis (IPAA), or an ileorectal anastomosis (IRA). At that stage, the decision is no longer about treating active disease, but about choosing which option may best fit a person’s future quality of life (QoL), preferences and priorities.

Others Speakers and Events to be added. You can find further information about our webcast schedule for 2026 with links to register and view recordings of previous webcasts at pouchsupport.org/events/

J Pouch Support Facebook Group hits 2000 member milestone

J Pouch Support Facebook Group hits 2000 member milestone!

Jenny Hogan recently became the 2000th member of the J-pouch support (UK specific) facebook group, an online community which continues to grow and which provides an outstanding platform for pouchees to share pouch-related issues and comments and to receive tips, advice and support from fellow pouchees.

About the J Pouch Support (UK Specific) Facebook Group

The J-pouch support (UK specific) group was founded some 12 years ago by two pouchees – Sam Wainwright and Sahara Fleetwood-Beresford. The group moderators for the last 8 years have been Gary Bronziet and David Davies, who are respectively the Membership Secretary and Chairman of The Red Lion Group. RLG is a pouch support charity which is very closely affiliated to St Mark’s Hospital in London, where the operation was first conceived by Sir Alan Parks and Professor John Nicholls. With over 2,000 members, the facebook group continues to grow at a pace and is now the largest pouch support Facebook group outside of the United States.

The name of the group “J Pouch Support (UK Specific)” may be a little misleading, as we have members with all pouch configurations (e.g., W-, S- and J-) and although the name might imply membership is limited to UK-based pouchees, in practice the group has a truly global membership – as can be see in the demographics below.

Demographics and activity

There are twice as many women than men in the membership and the demographics show that two thirds of members are aged between 35 and 54 The group has a phenomenal activity level of over 70%, reflecting the very high engagement amongst this close-knit group. The most popular days for posts are Tuesdays and Thursdays and the most popular times are 8am on Monday, Tuesday, Friday and Sunday and 7.30pm on Wednesday, Thursday and Saturday.

As would be expected, the most heavily repesented country is the UK, but you can get an idea of the world wide reach of the group (which is also reflected in the Red Lion Group membership)

The female members outnumber the men by about 2:1 which is an interesting statistic. Does that represent the number of pouches out there, or maybe an indication that women are more inclined to use social media, or join support groups?

The J Pouch

Pouch surgery involves the surgical re-plumbing of our bowels following life-saving surgery and which avoids the need for a permanent stoma and allows us to pooh via the bottom in the normal way. The outcomes of surgery are variable and hence the appeal of advice, guidance and support for pouchees and potential pouchees, particularly for members who live in the more remote areas where they might never have met another pouchee and where the medical professionals might not know much about pouches, let alone have the detailed experience and knowledge required to resolve common pouch issues.
The group is hugely supportive and kind and very well informed from their own personal experiences. Every new member receives a personal welcome message which is tailored to their personal pouch circumstance.

Joining the Facebook Group

Because of the personal nature of the discussion, the group is a private facebook group, which means that to view the content and to post or comment it is necessary to submit a join request to the groups administrators. If you are not already a member, you can submit a join request by clicking the button below and then submitting a join request. Your request will normally be accepted within 24 hours.

Join Group

It is not necessary to be a member of the Red Lion Group to join the Facebook Group (and vice versa!)

We look forward to many more years of growth and to many more years of pouchee support and advice via this very special group.

Welcome to Jenny and here’s to the next 2,000 members!

You can read Jenny’s inspirational story here.

Our 2000th Facebook Group member shares her inspirational pouch…

Our 2000th Facebook Group member shares her inspirational pouch journey – which started at the age of just six!

Jenny Hogan lives in the suburbs of Sydney, Australia, in the shadows of the Harbor Bridge. She is a qualified nurse specialist and works part time in intensive care, whilst also raising two young children. In her younger years she travelled widely and during a stay in Edinburgh she had a clock stolen by a Scottish International scrum half – not so unusual for anyone who knows any Scottish scrum halves. But Jenny has one feature that is common to us all in this group, she has a pelvic pouch! Furthermore, Jenny recently became the 2000th member of the J-pouch support (UK specific) Facebook group, an online community which continues to grow and which provides an outstanding platform for pouchees to share pouch-related issues and comments and to receive tips, advice and support from fellow pouchees. To celebrate this significant milestone, we thought it would be nice to share Jenny’s remarkable pouch story, which will resonate with many of you and might inspire in equal measure.

Jenny’s journey

I first noticed signs of ulcerative colitis at the very young age of just six years old. Steroids didn’t resolve the disease and were beginning to stunt my growth by the time I was eight years old. That was when my parents were faced with the stark reality that I needed a total colectomy to save my life.

Pouch surgery was in the very early stages in Australia at the time and only carried out in a couple of centres, but my parents and I were lucky. One of my surgeons, Professor Graham Newstead, had received training at St Mark’s Hospital and, along with his colleague Eddie Shi, had already performed pouch surgeries on two other children. So I became the third child at the centre to receive a pelvic pouch when I was just ten years old – one of the youngest people ever to have pouch surgery apparently.

My pouch surgery was done in a two-stage procedure: total colectomy and J-pouch creation in the first operation, and closure of the temporary ileostomy in the second. I was very unwell after the first operation due to extremely high output and related complications such as dehydration. I had to spend most of the time between the two surgeries in hospital on a drip just to stay hydrated. As a result, the second surgery was carried out only three months later, in October 1988.

I have unpleasant memories of that short period when I had a temporary stoma, and I’m extremely grateful that the pouch surgery has allowed me to live bag-free for 38 years and counting since those early days. I remember my mother being calm and pragmatic throughout; she had full trust in the surgeons and was prepared to consent to the pouch surgery on my behalf. I also had the chance to speak with another young pouchee, Rachel, who was 14 at the time and very supportive of the surgery. Even so, it must have been an extremely worrying time for my parents. Nevertheless, I recovered well from the second surgery and was back at school within two weeks. In general, I remember a pretty much carefree time, with my only concerns being the noise I made in the toilets and the discomfort of natural toilets—basically holes in the ground—on school camps. I’m sure many fellow pouchees can relate.

My initial recovery hit a glitch about six months after my take-down when I became breathless and tired, and it turned out I was severely anaemic with very low iron levels. I was transfused with three units of blood and recovered quickly, but I’ve continued to need iron supplements right up to the present day. Other issues have included occasional pouchitis (which responds well to a few doses of ciprofloxacin) and butt burn (which I manage with a dab of low-dose steroid cream). Aside from these, I got on with my life—travelling the world whenever I could while studying nursing, with only the occasional small-bowel obstruction to worry about if I ate too many trigger foods such as leafy greens, raw mushrooms or apple without chewing them to mush. In 1996, I was hospitalised with a more troublesome blockage that resolved on its own but served as a key reminder for me to chew properly.

These issues aside, I feel fortunate to have had good outcomes and continue to be well to this day, some 38 years on from my take-down surgery. I remain cautious about eating a balanced diet, chewing thoroughly, avoiding trigger foods and not gulping down a pint of water immediately after meals. Perhaps the biggest impact my pouch has had on my life is that I’ve avoided travelling to parts of the world where food-poisoning risks are higher. I hope one day I’ll overcome these concerns to visit Asia and South America and enjoys the many and varied foods.

I experienced no negative sentiments from others while growing up—I just got on with things. I married my husband, Anthony, at 30, and we have two lovely children: Eleanor (12) and Fletcher (9). Both were delivered by C-section to prevent any issues for the pouch during childbirth.

Jenny with her husband Anthony and Children Eleanor and Fletcher

My job as an intensive care senior nurse is very demanding, involving 12-hour shifts spent mostly standing and walking around the ward. However, I’ve never had pouch-related restrictions and haven’t felt the need to share my pouch status with colleagues.

In terms of function, I feel my pouch works pretty well: 6–8 bowel motions per day depending on food and drink, and only very occasionally needing to get up once in the night. I don’t experience urgency. I have a pouchoscopy every couple of years and am currently under the care of Dr Catherine Ellard. As far as I know, there are limited pouch-support networks in Australia, and I really value the online resources on pouchsupport.org and the J-pouch Support (UK specific) facebook group. I’ve already benefitted from discussions about hydration and even followed the recipe to prepare the St Mark’s rehydration drink—for the first time in 38 years of pouch life!

Welcome to this super supportive group Jenny and thank you for letting us tell your remarkable story.

David Davies
RLG Chairman

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!“.

Updated 10 July 2025

The latest monthly pouch forum took place on 7 July 2025 via the magic of zoom with 16 participants dialling in from the luxury of their own homes for an evening of relaxed and supportive pouch-related banter. Once again, we had an international attendance with at least three people calling in from the USA, a couple from Europe and even one from Wales!

These meetings are informal with no set agenda, no minutes and no recordings. Participants speak freely about their pouch issues and pouch experiences, which often includes “lavatorial comment” (as my Dad used to call it), but all “in the best possible taste” (to quote the 80s UK comedian Kenny Everett!).

There were new people for whom this was their first meeting, all the way up to regulars who attend most – if not all – of these monthly zooms. In terms of pouch experience – we had the full range, from recent pouches and those who were thinking about getting a pouch all the way up to 40-year pouches. So plenty of opportunity for sharing experiences, mentoring the newbies and providing lots of support from this fantastic group.

Topics discussed included but were not limited to:

Likelihood of adhesions and/or strictures causing blockages
Horse riding with a pouch
Long distance cycling with a pouch
The St Mark’s pouch/fistula annual update
J-pouches for FAP and differences from pouches formed because of UC
Diet and pouches
How to avoid leakages
Difference between leakage and seepage
Any complications of long term living with the rectal stump (prior to pouch formation)
Air travel with a pouch
Air travel with pouch and stoma paraphernalia
What is a fistula?
Safety of living with an inflamed rectal cuff

As usual the conversations went on beyond the 90 minutes, but almost all the attendees stayed on the call to the end, reflecting the relevance for them of the topics being discussed.

This was another belter of a meeting with lots of good humour and highly supportive chat, with a range of pouch experience and with a wide range of pouch-related topics. Thank you to all who took the time to dial in and to Gary as always for setting the call up and managing the registrations. This is such a good forum for people to learn what pouch life is really like.

The next pouch forum takes place on Monday 4 August starting at 7.30pm. Hope to see you there.

Best wishes

David Davies
Red Lion Group Chairman

Check out the events page on our website using the button below for details of upcoming events and to register.

EVENTS

Published 13 January 2025
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!

J Pouch related live webcasts scheduled for 2025

The Red Lion Group schedules another series of live webcasts for 2025 featuring world renowned speakers on subjects of great interest to patients considering or having undergone J Pouch Surgery.

We are delighted to announce that this year we have a new speaker (for us!) – Clemmie Oliver – a specialist IBD Nutritionist who has a pouch herself!

Janindra Warusavitarne – Consultant Colorectal Surgeon

Wednesday 13th August at 19:30 (BST)
We are delighted that our next live webcast will feature Janindra Warusavitarne, the highly renowned Consultant Colorectal surgeon at St. Mark’s Hospital. I am sure that he is well known to many of you either from previous webcasts or indeed as one of his patients. This webcast “J Pouch or Stoma? A life changing decison” will take place on Wednesday 13th August at 7:30 pm. (BST) and as usual prior registration is required.

You can view a recording of this event on the Red Lion Group YouTube channel below.

Guy Worley – Consultant Colorectal Surgeon

Monday 28th July 2025 at 19:30 pm (BST)
Former St Mark’s research fellow Guy Worley looks at the pros and cons of opting to have pouch surgery. Is it the answer for UC sufferers and what are the alternatives? He also reviews the latest technical changes in pouch surgery. Finally, he asks if patients are properly primed to give their consent to operations? Guy is now a consultant IBD surgeon at The Royal London Hospital.

You can view a recording of this event on the Red Lion Group YouTube channel below.

Clemmie Oliver – Nutritional Advice for J Pouch patients

Wednesday 23 July 2025 at 7:30 pm (BST)
Recipes for success! Specialist IBD Nutritionist Clemmie Oliver looks at how diet and lifestyle can support recovery from pouch surgery and how it is pivotal to our ongoing health with a pouch. Clemmie who had UC aged 9 and has an ileo-pouch herself founded and runs The Nutrition and Lifestyle Medical Clinic (NALM). She is a passionate advocate of helping pouchees cope with food issues and nutrition needs.

This is a fantastic opportunity to hear from a specialist IBD nutritionist with personal experience of living with a J pouch. Early registration is recommended to ensure your place.
You can view a recording of this event on the Red Lion Group YouTube channel below.

Ben Barbanel – Back to peak fitness after J Pouch surgery

This webcast took place on 30 April 2025. Featuring Ben Barbanel who is a member of the Red Lion Group and owner of a J Pouch. Ben recently embarked on a fitness program and speaks about his journey to return to peak fitness at the “grand old age of 45” !

Ben is a regular contributor to Red Lion Social channels and last year was invited by Janindra Warusavitarne to speak at a European Colorectal Surgery Conference in Prague. He also Co-presented with Janindra on a Red Lion Group webcast on the “Patient / Surgeon Relationship“. Apart from the fitness content, the conversation and follow up Q&A covered in this session covers many topics relevant to Pouch Patients. You can view a recording of this event on the Red Lion Group YouTube channel below.

Others Speakers and Events to be added. You can find further information about our webcast schedule for 2025 with links to register and view recordings of previous webcasts at pouchsupport.org/events/

Has ulcerative colitis or related surgery impacted your ability…

Has Ulcerative Colitis or related surgery impacted your ability to work?

We have been asked to advertise a research project to be conducted by Mr Orestis Argyriou, a research fellow at St. Mark’s Hospital Academic Institute. His research is focusing on improving patient counselling around surgery for Ulcerative Colitis (UC), and more specifically into improving the delivery of information in relation to work-related experiences and Quality of Life (QoL), which he feels seems to be quite neglected.

The first step is to conduct qualitative interviews, to hear from patients about their lived experiences and the research team is interested to hear from people that have had different types of surgery (e.g. ileostomy only, J pouch or ileorectal anastomosis), as well as from people coming from different professions in terms of the physical requirements and components of their jobs.

Further information below. If you are interested in taking part please register your interest by contacting the research team by email at lnwh-tr.workuc@nhs.net

Mr Orestis Argyriou, MSc, MRCS is a Research Fellow in IBD & Colorectal Surgery,
St Mark’s National Bowel Hospital & Academic Institute

If you are interested in taking part please register your interest by contacting the research team by email at lnwh-tr.workuc@nhs.net

Kangaroo Club Information Day 2026

Inspirational stories of living with a J Pouch

J pouch no barrier for this marathon man

More inspirational stories

Life time achievement award for Prof John Nicholls

A Man of the People

Do the new GLP-1 “slimming” drugs deliver better pouch performance?

What are GLP-1 drugs and how do they work?

Are they safe?

What are the benefits of GLP-1 drugs for pouchees?

Can pouchees get GLP-1 prescribed on the NHS?

J Pouch related live webcasts scheduled for 2026

Samantha Evans and Lisa Allison

Dr Alexa Duff – Psychology and IBD

Kapil Sahnan & Orestis Argyrou – Improving counselling for patients considering surgery for ulcerative colitis

J Pouch Support Facebook Group hits 2000 member milestone!

About the J Pouch Support (UK Specific) Facebook Group

Demographics and activity

The J Pouch

Joining the Facebook Group

Welcome to Jenny and here’s to the next 2,000 members!

Our 2000th Facebook Group member shares her inspirational pouch journey – which started at the age of just six!

Jenny’s journey

RLG monthly J Pouch forums on zoom

J Pouch related live webcasts scheduled for 2025

Janindra Warusavitarne – Consultant Colorectal Surgeon

Guy Worley – Consultant Colorectal Surgeon

Clemmie Oliver – Nutritional Advice for J Pouch patients

Ben Barbanel – Back to peak fitness after J Pouch surgery

Has Ulcerative Colitis or related surgery impacted your ability to work?