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

Pouch irrigation and catheterisation demystified

By David Davies – RLG Chairman

This article aims to demystify the techniques of pelvic pouch irrigation and catheterisation, which are used by some pouchees to achieve full pouch emptying. RLG member Claire has kindly produced a series of short, educational videos which provide a very practical guide on to how to use, clean and store the system – in this case the Qufora Irriseto flow enema – for the benefit of pouchees who might be contemplating irrigation and catheterisation as part of their pouch management. Other systems are available, for example the Aquaflush system by Clinisupplies in the UK. These more sophisticated systems have flow valves instead of bulbs, which are more user friendly and help to eliminate air from the system. But you could also use a simple enema bulb, available from Amazon and other outlets. By way of a contrast, RLG Membership Secretary Gary has produced a short video to demonstrate the use of one of the simplest systems on the market – the Medena catheter.

Perspective

It is difficult to find information on how many pouchees practice irrigation and catheterisation; on a straw poll of the monthly zoom pouch forums only 2 of 15 attendees practiced it routinely. In general, it is used to help emptying in situations where spontaneous emptying is challenging (for example with a stricture) or indeed where pouchees want to fully empty. Some pouchees might have an innate aversion to such practices, but it is useful to be informed from an experienced users and we hope these videos will therefore be of interest to all pouchees.

Claire’s Story

Claire had her pouch surgery in 1997 due to UC and reports that it was pretty much “plain sailing” (barring surgery for adhesions) until around 2016. Then she started getting issues with frequency, cramping and very disturbed nights due to incomplete emptying as a result of strictures (one below the pouch and two above). She searched the internet for “J pouch not emptying” and up popped the Red Lion Group. Claire reports that the articles and the posts gave her hope that she could avoid a permanent stoma and she also received some coaching via text from RLG member Ben Barbanel on the irrigation process, something she had no idea about before discovering RLG.

Claire reports “it is an absolute game changer, I can go out all day and not worry about pouch logistics. I also discovered that many of the foods I thought I could not eat just needed to be chewed properly, so they are back on the menu. I was intimidated by irrigation to start with, but it now takes just 15 minutes at either end of the day.” Perhaps most striking are Claire’s subsequent comment that she is still confused as to why she had to find this out herself and why she wasn’t directed by medical professionals. And she is happy to share the details of irrigation and catheterisation in case it helps other pouchees. A nice comment on the value of RLG and in particular to Ben Barbanel, a genial and eloquent advocate for a healthy pouch.

Incomplete emptying of a pouch can lead to increased frequency, increased urgency, discomfort, a bloated feeling and can lead to pouchitis. Incomplete emptying before bed also increases the likelihood of having to get up in the night; so the ability to completely empty the pouch is a priority for pretty much every pouchee.

Some pouchees are less able to spontaneously evacuate their pouch, for example if they have a stricture (narrowing) above and/or below the pouch. Claire comments that she has three strictures; one below her pouch and two above the pouch. In such cases, the use of a catheter with or without pouch irrigation might be a good, non-surgical option which enables full emptying.

The Medena catheter will be familiar to many pouchees who use it to fully evacuate the pouch in cases where spontaneous evacuation is not occurring. Sometimes, however, the stool can be too solid to easily pass, even when a catheter is inserted. This can happen if you are eating high insoluble fibre diets for example, and/or dehydration to name but two reasons. In such cases the pouch might benefit from a “flush” to liquidise the contents of the pouch using an irrigation device, which involves squirting some liquid (typically warm water) in to the pouch using an irrigation device. Gary explains how to use the Medena catheter with flushing in his video below –

Pouch irrigation and catheterisation are discussed extensively by Ellie Bradshaw in three webinars she recorded for Red Lion Group in recent years and which are available to download from the RLG website and also from our YouTube channel. Ellie was the Head of Biofeedback at St Mark’s Hospital and is an expert at assessment of pouch function and resolution of performance issues. She comments that complete emptying can be a game changer for many pouchees who suffer with frequency and/or urgency.

If you look back in the Roar archives on the RLG website you will find that Roar! Issue 39: Christmas 2008, included the results of a survey on Medena catheters, which showed that 17 of 23 pouchees with some degree of functional outflow obstruction reported an improvement of quality of life when using the catheter. Furthermore, our own Christopher Browne wrote of his joy and relief at his own “catheter conversion”. See https://pouchsupport.org/my-catheter-conversion/

For those pouchees who might benefit from using a catheter, there are lots of practicalities to consider up front – what equipment do you need to irrigate and catheterise? How do you carrying this equipment around in a discrete way? How do you clean the equipment after use?

Claire has produced an excellent series of six short videos that will answer all of these questions and help you to visualise exactly how to use, wash and store the paraphernalia safely and discreetly. The clips are as follows:

Medena catheter – description and use (1min 19sec) The volume of water in your enema will be personal to you and what feels comfortable / effective for you. Claire suggests starting with a small of water in your enema and build up.
https://youtu.be/aQDlV43ypyg
Qufora Irrisedo flow enema kit – description, use and storage (2min, 3sec). The catheters do not need to be sterile; Claire uses a bleach solution to store the catheters as this eliminates odours and cleans better than water alone.
https://youtube.com/shorts/XtFEQ5LoJTM
Example set up for catheterisation (i.e after irrigation) (1min 43sec)
https://youtu.be/5yt_xByFaQ8
Next steps after irrigation (53sec)
https://youtu.be/jDVQd_U3GfM
Clearing up and sterilising (2min 7sec)
https://youtu.be/SxsRx3mwLxc
Kit storage for storage when not in use and for travel, for taking to work, just in case. Claire also suggests the Qufora Irrisedo MiniGo (see below) in case of unexpected irrigation whilst travelling. And you can get two cut down catheters in a toothbrush travel container! (1min 25sec)
https://youtu.be/ntQsf3fP5K4

I hope these videos will help members to better visualise what the irrigation and catheterisation kit can look like and how it is used, cleaned and prepared; how it can be packed for travel and how it can be carried. A huge thanks to Claire and Gary for producing the videos and in the process helping to de-mystify the process of irrigation and catheterisation.

As always, we advise that you check with your medical team to make sure that irrigation and catheterisation are appropriate and correct for you and your condition(s).

David Davies
RLG Chairman

See Link for further information about the Qufora IrriSedo MiniGo & MiniGo Flex. Please note that the Red Lion Group does not endorse or recommend any particular product. In all cases, consult a medical expert or your colorectal consultant about your condition as we are all unique!

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

Land’s end to John O’Groats with a J Pouch

Having a J Pouch proved no obstacle for RLG member and runner Bruce Willoughby’s ambition to complete this historic “Run Brittania” ultra marathon

When I told a friend I had a foolhardy dream to run an ultra-marathon he said: “What’s stopping you?” So, I made a list of all the obvious no-nos and improbables including sharing rooms and toilets with fellow competitors, lack of loos on the route, poor nutrition knowledge and hydration problems.

However, my fantasy of achieving the seemingly impossible was re-kindled when a running friend completed the 1,000 miles from Land’s End to John O’Groats and returned triumphant.

Then suddenly my earlier misgivings started to nag me again. I am a GP and had a pouch op in my 20s and for a long time the thought of running was too much due to the jigging about that can make you want to go to the loo. This sometimes made it easier to not do the things I wanted to do.

Despite that I had started to go for a few short runs gradually increasing the distances until in 2023 I ran the London Marathon. I then started to train more seriously and ran a 30-mile and then a 35-mile ultra-marathon which began to give me hope.

Then, as luck would have it, I had a problem with my knee and needed surgery. This reduced my preparation time from 18 to six months and forced me to cycle to help build up my fitness.

The big day arrived on 31 May this year and the 22 runners taking part in the event catchily-titled “Run Britannia” met up at the start at Land’s End.

**Starter’s orders: the 22 ultras line up at Land’s End**

The event itself turned out to be as much a physical challenge as a scenic adventure. During the first few days we were buoyed with excitement as we negotiated the stunning 630-mile South West Coast Path, followed by Somerset’s spectacular Cheddar Gorge and finally ending that first week crossing Bristol’s Clifton Suspension Bridge.

**Scenic route: Bruce Willoughby flanked by Clifton Suspension Bridge**

I was managing by eating low residue carbohydrate foods during the day and keeping myself hydrated, and then moving on to high protein and high carbohydrate drinks and meals in the evening.

However, by the end of the second week as we crossed into Wales and the Offa’s Dyke Path national trail, I faced a new challenge – aching shins and swollen ankles, popularly known as shin splints, which the event’s physio taped up to enable me to continue.

In the third week our doughty crew reached the North West of England via the Runcorn Bridge, through St Helens and Preston, along Morecambe Bay to the Lake District. My shins were still suffering but, pain or no pain, it didn’t dull the excitement of crossing into Scotland at Gretna Green.

It was an emotional moment, celebrated with bagpipes and a hearty Scottish breakfast. I couldn’t believe we’d come so far, but we were still only halfway to John O’Groats.

Then reaching Glasgow, following the meandering River Clyde, in week four saw us push further north, skirting around Loch Lomond and crossing Glen Coe to Fort William on the West Highland Way in the shadow of Ben Nevis.

My shins started to subside and allowed descents without major issues. Reaching Fort Augustus, along the Caledonian Canal, the final week, with over 200 miles still to go, was filled with breathtaking vistas, especially the infinity views above Loch Ness and the magnificently remote Scottish glens.

The final day – 4 July – though wet and cold, couldn’t diminish our immense feelings of accomplishment as we rounded Duncansby Head and arrived at John O’Groats with a potent mix of pride, exhaustion, disbelief and relief.

It took us a total of 35 days (we actually ran for 31 days with a day off each week) and I’m proud and relieved to have completed something that two years ago I thought was impossible.

I hope that by completing and sharing my dream, others will be inspired to try and achieve theirs – whatever it is.

**Finishing touch: 874 miles later – Bruce wears his ultra-marathon medal**

A version of this article first appeared in ROAR! issue #69 – Autumn 2025. 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.

Back to peak fitness after J Pouch surgery

Back to peak fitness after J Pouch Surgery

The incorrigible Ben Barbanel has done it again! Regular readers of Roar! will have read about the five-year plan he created to help his recovery from surgery after pre-cancerous cells were found in the lining of his rectum (Roar!’s Summer 2023 issue). For by following a set of cleverly devised rules and changes of medication, the Red Lion Group member and pouchee successfully improved his lifestyle, family life and work as a City banker. Now he has moved several steps further ahead with another, even more rigorous regime which we will call Plan A!
Ben’s aim? To reach peak fitness in all his activities at the grand ‘young’ age of 45. And the father-of-three’s efforts didn’t go unrecognised. He joined a high-performance gym in London’s Mayfair and now features in their eye-catching, high-viz App – aptly (sorry!) named UP (which stands for Ultimate Performance). So how did our intrepid colleague hear about UP? He read about it in a fitness magazine called Men’s Health.

As Ben says: “I often sat in boardroom meetings, glancing around, thinking ‘I’m the only fat one here’. As a senior London banker and a father of three, I felt the weight of my success – literally!

“Something just finally hit me one day when I was reflecting on the trauma of what I had been through – and I thought to myself that being in peak condition can only give me the best chance (but clearly no guarantee) of everything working well going forward, and hopefully living a long and healthy life! “I found that years of living with ulcerative colitis and long stressful workdays had taken a toll on my body, energy and mood,” he says.

However Ben’s efforts on the course meant he not only lost all his excess pounds but also felt happier and fitter. As he told Roar!: “Losing 20kg(!) and regaining my health with UP has completely changed my life. I’m now strong, disciplined and thriving in every area of my life.”

Ben’s personal trainer at UP, adds: “It’s no secret that Ben had complex health issues, but we managed to work through them together. He had a real eagerness to learn and was completely bought into the process at UP. That’s just one of the reasons he achieved such great results.”

If you would like some advice and/or health tips from him, you can contact Ben at bb@barbanel.co.uk

Christopher Browne
RLG Committee member and ROAR! editor

Next week, we will be featuring Ben in a Red Lion Group Zoom webcast where he will be sharing more details about his Pouch journey and Ultimate Performance (UP) fitness routine. This will take place on zoom on Wednesday 30th April at 7:30 pm (BST) and we welcome anyone with an interest in achieving their fitness goals after pouch surgery to share their experiences. For further information and to register, go to pouchsupport.org/events/

A version of this article first appeared in ROAR! issue #68 – Spring 2025. 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.

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!247 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.

Join St. Mark’s Study: Help Shape a Sexual Function…

Join St. Mark’s Study: Help Shape a Sexual Function Questionnaire

A research team at the St. Mark’s Hospital Academic institute is looking for volunteers to help refine a sexual function questionnaire which will be used to support patients undergoing non-cancer colorectal surgery.

Fellow pouchees and past pouchees,

Those clever people at the St Marks Academic Institute have asked for our help in seeking 20 – 25 volunteers who can help them with some crucial research. Please consider taking part in this study and email Shivani at LNWH-tr.sexprom@nhs.net if you would like to take part.

The sex-PROM study will develop a sexual function questionnaire which will be used to support patients undergoing non-cancer colorectal surgery. This includes people like us who have undergone or are undergoing ileo-anal pouch formation.

The team has now developed the initial questionnaire. The next phase is to test the questionnaire to ensure it is relevant to patients, easy to understand and effectively supports patients after surgery. Participation in this phase will involve a short, 30 minute interview via Microsoft Teams/Zoom at a convenient time for you. During the interview, you will be asked to fill out the draft questionnaire and provide your feedback on the layout, wording and response options to ensure they are relevant and easy to understand. That’s it! – a 30-minute zoom call at a convenient time during which you will be asked to review a form and give your feedback!

The study is open to men and women and you do not need to have a sexual dysfunction to take part. All responses will be anonymised and treated in strictest confidence

Thank you for your consideration, on behalf of Shivani and the team at the St Marks Academic Institute.

David Davies
RLG Chairman

J Pouch Support facebook group hits 1700 members

The J-pouch support (UK specific) facebook group is a super platform for the sharing of questions, comments, information, tips and advice on pouches. It has been in existence for 10 years or so and has never been so popular. We posted a story of the 1,500^th member, Amanda Nash, not so long ago. Well, the membership has just recently passed 1,700, reflecting the value of this j pouch support facebook group to pouchees and their loved ones.

The 1,700^th member is James Miller and here is his story:

James Miller – J Pouch Support Facebook group 1,700th member

I’m a specialist in data and analytics and currently leading a fast-growing management consultancy. It is a busy and full-on job, growing and running the business.
I stress this, as I was so sick before I had my ileo-anal pouch, I wasn’t sure I’d ever work again. Thankfully, my pouch has enabled me to live as normal a life as possible, and I’ve been determined to live it on my own terms.
I live in Buckinghamshire with a very understanding wife, two teenagers (less understanding) and a dog (who keeps me fit). Hobbies wise, I love exercise, a bit of cycling, gym stuff, and time in the garden.
I was originally diagnosed with Ulcerative Colitis in 2010, and none of the standard medications worked, apart from steroids. After 4 years on and off steroids, and essentially in a constant state of flaring, I was very ill, tired, and at my wits end.
In 2014 I elected to have pouch surgery after deciding against biologic medication. I was taken through the various risks and considerations by Janindra Warusavitarne at St. Marks Hospital and saw that I was in expert hands. St. Mark’s has been a feature of my life for 15 years, and the team there continues to provide amazing support. I’m happy to travel the 40 odd miles to my appointments, despite the London traffic!
I chose a pouch over a stoma as I have always been sporty and felt that with my hands full with two small children (at the time), I didn’t fancy having an external bag.
My surgery was completed over the course of three ‘sessions’ and full pouch connection was made in December 2014.
I’ve lived with the pouch for 10 years now, and for most of that time things have been great. They are certainly better than before the surgery and I’m much fitter overall now than I was in my mid-thirties.
I have had a couple of cases of pouchitis, which were well managed by antibiotics. My pouch function has changed, and it is slightly less effective, but still very manageable. I’ve also discovered that psyllium husk works wonders for my pouch function.
When I had my pouch I was told that like a baby it can be irritable and prefers routine, which was excellent advice.
Over the years I’ve helped a few people considering surgery answer their questions about the j pouch and tried to show them that it can actually be a very liberating surgery.
I’ve joined the group as I thought it was a good idea to finally join the wider pouch community after a decade of living with one.

Thank you so much for taking the time to pen your story James and very best wishes for continuing good pouch health.

David Davies
RLG Chairman and Facebook group administrator

The J Pouch Support (UK specific) facebook group is a private group that welcomes members from all over the world. If you are not already a member you can submit a join request by clicking here.

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J Pouch Support facebook group hits 1700 members

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