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!210 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.

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

If you suffer with Crohns disease or Ulcerative Colitis you may be eligible to take part in this survey being conducted by a St. Mark’s Hospital Research Fellow. See below for further details and follow the link or scan the QR code if you feel you are eligible and would like to complete the questionnaire.

Support St. Mark’s this festive Season

St Mark’s Hospital Foundation is dedicated to funding groundbreaking research at St Mark’s Hospital and supporting the training and education of its medical professionals. By donating today, you’ll help St Mark’s continue its vital work; caring with guts for the thousands of individuals affected by complex bowel diseases.
And there’s more—thanks to the generosity of our matched funders, your donation could be doubled, making an even greater impact!

To read more about the work of the St Mark’s Foundation and to donate, click on the button below.

Donate here to support St. Mark’s, who have been Caring with Guts since 1835

From the archives – The ROAR! guide to the top ten…

From the archives – The ROAR! guide to the top ten barrier creams for J pouch

In this our 30th anniversary year of the Red Lion Group, we continue our journey back in time to early versions of our ROAR! magazine. In this article, we go back to issue #53 published Summer 2017 which contained this article on the subject of Recommended barrier creams for people with a J Pouch.

Names have been anonymised for publication on our website.

The Roar! Guide to the top 10 Barrier creams for J Pouch – by Roar! editor, Christopher Browne.

Anal soreness and irritation are two of the most unpleasant after-effects of a J pouch op. So here is our user-friendly guide to the top 10 products to help you banish those bedtime blues!

How many of you have suffered from soreness, irritation and rashes? Quite a few I should think from the number of times these daily discomforts are mentioned at the Information Day workshops. They can affect both men and women. But what products can we use to help clear them up and where can we buy them?

Here is our top ten guide to the most highly rated creams and lotions based on your own experiences and some authentic medical evidence.

We’ll start with Calmoseptine ointment which Red Lion member Tracey S says she depends on and refers to as “a bit like a very thick calamine lotion and a product that I have found both very gentle and effective”.

Visit the US-based website https://calmoseptineointment.com for more information.

{Note from GB – this product is not officially distributed in the UK but can be found online, on eBay or Amazon, for example}

Adds Tracey: “The other cream I use when my skin is at its most sore is Ilex Skin Protectant. It really does the job in terms of protection…It’s very gluey and can stick your bottom together a bit but the instructions suggest you use a top layer of Vaseline to avoid this, and it really does the trick!”

For more information see https://www.ilexhealthproducts.com

One of the most highly recommended creams at the female workshop at this year’s Information Day was Sudocrem, a nappy rash treatment which you can buy over the counter at most supermarkets and chemists. For further information see https://www.sudocrem.co.uk

Equally effective, Red Lion members agree, is the award-winning Cavilon barrier cream. You can buy this product on prescription as a pump spray or cream – though the latter is easier to apply apparently.

To find out more, see https://www.3m.co.uk/3M/en_GB/Cavilon-Durable-Barrier-Cream/

The brand name Clinell covers a group of hand and skin care products which their manufacturer Gama Healthcare describes as “antimicrobial disinfectants”.

The Clinell spray or wipes are used for anal soreness and rashes and can be ordered from https://gamahealthcare.com/range/universal-range/ .

While Vaseline, which many of us use as back-up to other products or as a regular ointment can be bought over the counter at all main UK chemists.

Hydromol is another ointment that is recommended by several of you. It helps treat dry skin and eczma-related conditions and can be bought on prescription or ordered from https://hydromol.co.uk/products/hydromol-ointment/

St Mark’s Hospital recommends sufferers try small doses of Metanium. This ointment is usually used to treat nappy rash but can be used by adults as well. It is sold by all the main UK chemists.

An oft-mentioned lubricating gel for catheter users – both male and female – which eases catheter insertion and helps guard against infection is Instillagel or lidocaine.

{Note from GB – Instillagel and Lidocaine have anaesthetic properties and are available on prescription. An alternative over the counter product recommended for catheter users is KY Jelly}

Our former Red Lion membership secretary, Susan Burrows, {who sadly, has since passed away}, said “At the Information Day workshops most people agree that certain drinks and food can increase anal irritation and there is some consensus that the condition does improve as the skin in that area adapts. Everyone – both male and female – finds using creams and lotions an excellent way to relieve irritation – and if you are lucky enough to have a bidet that can really help application too.”

A leaflet on skincare from St Mark’s Hospital advises: “If you are leaking pouch contents onto your skin, there is a possibility that you will become sore. This is more so than with ordinary stool as pouch contents contains digestive enzymes and can be quite corrosive. The best way to prevent soreness is by cleaning as soon as you can, and meticulous attention to removing all trace of stool. There are also many different creams that can help with sore skin or used as a barrier. The success of different creams seems to be very individual – it is worth experimenting to find the best one for your skin. It may be worth contacting your GP or stoma nurse for advice on available products.”

So, dear readers, if you know of any other creams, ointments, lotions or sprays that are recommended by healthcare professionals and have worked for you, please contact Gary Bronziet at membership@pouchsupport.org

Christopher Browne
ROAR! Editor

Member Feedback

Stephen Woods commented “I find Bepanthen is very good. Not the cheapest, but readily available and tube lasts ages as you really only need a thin smear. Quickly soothes even very irritated skin“

To read the original article and the rest of issue #53 of ROAR! you can download the entire issue below.

ROAR – Issue 53: Summer 2017

Download Now!2182 Downloads

ROAR! is the magazine of the Red Lion Group that is published twice yearly. If you are a member of the Red Lion Group, you will have online access to ALL issues of ROAR! going back to issue #1 which was published in 1994. If you would like to find out about membership of the Red Lion Group please go to pouchsupport.org/join/

J Pouch Support Facebook Group hits 2000 member milestone

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…

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

Jenny’s journey

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

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

Back to peak fitness after J Pouch surgery

Back to peak fitness after J Pouch Surgery

J-Pouch anal and vaginal fistula study update

J-Pouch anal and vaginal fistula study update

Who are we looking for?

Introductory discussion meeting on Teams

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

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

J Pouch Support facebook group hits 1700 members

J Pouch Support facebook group hits 1700 members

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

Support St. Mark’s this festive Season

Support St. Mark’s this festive Season

From the archives – The ROAR! guide to the top ten…

From the archives – The ROAR! guide to the top ten barrier creams for J pouch

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