Stories Archives - J Pouch support charity

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

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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!2027 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/

From the archives -How pregnancy and childbirth affected my…

From the archives – How pregnancy and childbirth affected my j pouch

In this our 30th anniversary year of the Red Lion Group, we continue to our journey back in time to early versions of our ROAR! magazine. In this article, we go back to issue #3 published Summer 1996 which contained this article on the subject of Pregnancy and childbirth with a J pouch.

Here is an excerpt from the article that featured in that issue.

From Rome to Raphael – How pregnancy and childbirth affected Rachel Abedi’s pouch

Knowing that many pouch owners have trouble conceiving, I feel almost guilty that my baby began more by chance than design, his existence more the result of a romantic weekend in Rome than of concerted effort.

However, once I discovered that I was pregnant, all sorts of questions began to worry me: would my pouch, created three years ago, be squashed by the growing baby? Would my absence of colon limit the baby’s nourishment? Might the pouch be damaged during childbirth? If I opted for a caesarean section, would the incision hit adhesions, and the wound heal properly given my already extensive scarring?

These worries might sound silly now, but they were pretty real to me at the time, so I decided to see a private specialist obstetrician for ante-natal care. My anxiety about being treated as a ‘normal’ mother-to-be on the NHS was heightened when I attended an ante-natal clinic at my local hospital. At each visit, I was seen by a different junior doctor, none of whom seemed to know about pouches, let alone any pouch problems associated with pregnancy.

In the end, the cost of private care was too high, and actually proved unnecessary. I asked to be put on the books of a consultant obstetrician at the local hospital, who reassured me with his knowledge of my situation, helped by an informative letter from my pouch surgeon.

The hospital consultant explained that one risk of having a caesarean was that an adhesion might accidentally be cut (the pouch itself is too far behind to be in the way), perhaps making swift additional surgery necessary to fix my digestive plumbing. However, an advantage of being at a large NHS hospital was that surgeons would be on standby in case that happened. I still preferred this option to the risk of rupturing an adhesion during labour.

Pregnancy had no effect whatsoever on my pouch, certainly in the early months. The baby settled to the left of my central scar, perhaps because adhesions to the right (where the stoma had once been) left him too little space to manoeuvre. This meant that my belly looked a little odd, and the scars didn’t stretch as much as the skin, but it felt fine.

I had to go to the loo (pouch) a little more frequently during the last month or so of pregnancy, but the consolation was that I did not suffer from constipation, which is otherwise common during pregnancy. My diet remained the same, with the addition of multi-vitamins and more fluid, and I put on weight as normal.

I must admit to feeling great relief when my pouch surgeon recommended an elective caesarean, although I could have opted for natural childbirth had I really wanted to. Somehow I felt unperturbed by the prospect of an operation – I was after all an old hand at abdominal surgery. But the rumoured agonies of natural childbirth were utterly horrifying to the uninitiated. Stitches in my tummy I can cope with, but there – no thank you! Better the devil you know…

I was fully conscious during the birth, although numbed from the diaphragm downwards by an epidural. Giddy with hope and anticipation, I giggled all the way through the operation, and was able to welcome Raphael as soon as he made his grand, if undignified, exit (or should I say entrance?). The epidural also meant that I did not have to recover from a general anaesthetic, which was a blessing.

I then spent five days in hospital, standard for post-caesarean recovery, during which I learned the basics of baby care under the much appreciated supervision of the nursing staff.

A close eye was kept on the wound, and the transition from drip to fluids to solid food was made slowly, because this had been problematic after pouch surgery.

The point where the caesarean scar crossed the long central scar took a little longer to heal than elsewhere, but six months on is almost invisible. Because of the scar tissue, I may only be able to have one, or at most two more caesareans, but a hat-trick will be quite sufficient

My life now is unrecognisable from my ‘pre-Raphaelite’ period, but the pouch has remained efficient and trouble-free. Obviously, women must make their own decisions about pregnancy and childbirth, guided by medical expertise, but I hope that my experience will help to reassure and encourage. My journey from Rome to Raphael was not a difficult one, and now I am thoroughly enjoying the fruit of my (lack of) labour.

To read the original article and the rest of issue #3 of ROAR! you can download the entire issue below.

ROAR – Issue 3: Summer 1996

Download Now!770 Downloads

This year we will be celebrating the 30th anniversary of the founding of the Red Lion Group and we would like to express our gratitude to the founders of the group which continues to flourish. Tim Rogers only recently stood down from the committee and I am delighted to say that Prof. John Nicholls is still a patron.

ROAR! is the magazine of the Red Lion Group that is published twice s a year. 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/

HLA-B27 – The genetic link connecting UC and other autoimmune conditions?

25 September 2020

The Internal Pouch – it started with this historic paper in 1978

8 April 2019

Prevalence of ‘pouch failure’ of the ileoanal pouch in…

Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis

The International Journal of Colorectal disease recently published a paper “Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis” by Zaid Alsafi, Alice Snell and Jonathan P. Segal which is an important study into the subject. Below, RLG chairman, David Davies reviews the paper. You can download the full paper at the end of this article.

How long do pouches last?

One of the important questions for pouchees is how long is their pouch likely to last? It is a regular question during webinars, during the zoom pouch forums and on the J-pouch support Facebook group at RLG and reflects a general concern that pouches will deteriorate over time. There are lots of references to pouch failure rates in medical publications – the generally accepted wisdom is 10-11% and publications from all over the world quote 2-15%, depending on many variables. No one knows for sure how many pouch surgeries have been carried out, which makes it difficult to estimate the failure rate.

Another way to estimate pouch failure rate is to look at the published medico-scientific literature from clinical trials, where extensive data is meticulously collected. But most single clinical trials are not very big, tend to involve a small, localised population and are not necessarily representative of the wider situation.

Medical researchers from Imperial College, London, have recently gathered together the data on pouch failure from a number of similar studies. In a paper published in the prestigious International Journal of Colorectal Disease the researchers’ collected data from many clinical trials and analysed it through a “meta-analysis”. Care has to be taken with meta-analyses to ensure that the data from many different sources can be summed up and analysed together but, if so, then the conclusions are likely to be more robust than from individual studies because the numbers involved are much larger. The investigators specifically focussed on adults (aged at least 18 years) and who had their surgeries due to ulcerative colitis. Pouchees will be reassured to hear the estimates of pouch failure rate from this meta-analysis were surprisingly low.

The researchers included data from 26 clinical trials conducted between 1978 to 2021, presumably including countries outside the UK. These studies involved 23,389 people and therefore present a huge amount of data for definitive calculation of pouch longevity.

The results of the meta-analysis are dramatic, as follows:

Description	Mean failure rate (%)	* Range (%)
Pouches less than 5 years old	5	3-10
Pouches between 5 and 10 years old	5	4-7
Pouches greater than 10 years old	9	7-16
Overall average pouch failure rate	6	5-8

*95% confidence limits (i.e. 95% of the data points occurred within this range)

In other words, for pouches less than 5 years old the mean failure rate was only 5% (with the range 3-10%). For pouches aged between 5 and 10 year the mean failure rate was also 5% but with a narrower range (4-7%). For pouches greater than 10 years old the mean failure rate was 9% (range 7-16%). And the overall prevalence of pouch failure was 6% (and within the range 5-8% for 95% of the patients followed).

The results suggest that previous estimates were on the high side and that pouch failures occur at approximately 6% in adults who had their surgery for ulcerative colitis. The researchers conclude “The overall prevalence of pouch failure in patients over the age of 18 who have undergone restorative proctocolectomy in UC is 6%. These data are important for counselling patients considering this operation”. Indeed it is an important consideration for people contemplating the pouch operation.

Hopefully this sort of analysis will provide definitive and reliable data to inform people who are trying to decide between a pouch and a permanent ileostomy.

David Davies
Chair – Red Lion Group

You can download the full paper below.

Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis

Download Now!

From the archives -the launch of the Red Lion…

From the archives – the launch of the Red Lion Group

We have decided to delve back into our ROAR! archives and share some of the articles with you – and in the year in which we celebrate the 30th anniversary of the Red Lion Group, what better place to start than ROAR! Issue #1 announcing the launch of the Red Lion Group on Sunday 10th April 1994.

Here is an excerpt from the article that featured in that issue.

The Launch of the Red Lion Group

This is the first newsletter of the Red Lion Group which is a support group for people who have a pouch or are considering having a pouch operation. The group was started by people who had their pouch operation at St. Mark’s Hospital, London but anyone is welcome to get involved. In this first article Tim Rogers recounts the launch of the group on Sunday 10 April 1994.

I went up to Aintree this year to see the Grand National. I lost about £20, but I didn’t mind because the following day Rachel Nicholson Abedi and I chaired the first ever meeting of the Red Lion Group. The group is largely made up of past patients of St. Mark’s Hospital in London who have made the transition from ileostomy to pouch.

A pouch is constructed by stitching the end of the small intestine in such a way as to give holding capacity, and plumbing it through to the anus. The operation is suitable for people who have suffered from ulcerative colitis and is a direct replacement for an ileostomy. While having an ileostomy takes some getting used to, it does allow people to be free from the chains of inflammatory bowel disease. Gone forever are the days of ill-health, urgency and planning your life around lavatories.

Patients undergoing a pouch operation lose the bag, but all the old fears about incontinence return. It was partly for this reason that we formed the Red Lion Group: to help people to decide whether a pouch is for them, and to give support to people who already have a pouch. A small band of us had been meeting once a month or so on a Thursday afternoon to plan the launch of the Red Lion Group.

When the big day arrived we did not know quite what to expect. Dansac kindly sponsored the event by laying on the venue in the beautiful grounds of Syon Park in southwest London and Mr. John Nicholls, one of the surgeons who pioneered the procedure, agreed to give a talk about the history of the pouch operation.

As Rachel and I sat nervously at the front of the conference room we counted that almost 100 people had turned up. Rachel stood up and spoke about the origins of the group which was the brainchild of her and the stoma-care nurse at St. Mark’s Hospital Celia Myers. Then I spoke briefly about the events that had led to this first full meeting before introducing Mr. Nicholls.

Mr. Nicholls’ talk was entertaining and informative. We were told that ulcerative colitis drives people to surgery in many ways. Some need it because the urgency ruins their lives. Others find that their health gets eaten away and they lack the energy and vitality to do things that everyone else takes for granted. By having an ileostomy people’s health is restored and they can go out and about safe in the knowledge that they are not suddenly going to have to go any moment.

People have a pouch operation for purely cosmetic reasons and so it is crucially important that people only undergo the procedure if they really want it. The operation is not suitable for sufferers of Crohn’s Disease. The operation has evolved over the years thanks to the genius of some gifted surgeons to arrive at today’s state-of-the-art ‘W’ pouch.

There was an animated question and answer session after Mr. Nicholls’ talk. The question of cancer-risk in pouch patients was raised. Mr. Nicholls said that although there had only ever been one case of instability of the pouch lining which could possibly lead to cancer he insists that each of his patients undergo a biopsy every year. Not all surgeons follow this example and this was perhaps the biggest talking point of the day.

The question of conception, pregnancy and birth came up. Mr. Nicholls recommended that women with pouches give birth by Caesarean section to minimise any damage to the bowel, but there is absolutely no reason why people with pouches should not have children. Indeed it turned out that there were three or four mothers with pouches at the meeting.

The problems of uveitis (an eye disorder) and arthritis linked to ulcerative colitis were also discussed. Some patients had been led to believe that a pouch would cure them of these disorders. Mr. Nicholls said that the link between ulcerative colitis and uveitis and arthritis were still obscure but progress was being made, as it was in the search for the origins of ulcerative colitis itself. He told one questioner that there was every chance that by the time her son grew up ulcerative colitis may possibly have been eradicated through genetic engineering.
……
To continue reading this opening article and the rest of issue #1 of ROAR! you can download the entire issue below.

ROAR – Issue 1: Summer 1994

Download Now!713 Downloads

ROAR! is the magazine of the Red Lion Group that is published two or three times a year. 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/

HLA-B27 – The genetic link connecting UC and other autoimmune conditions?

25 September 2020

The Internal Pouch – it started with this historic paper in 1978

8 April 2019

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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From the archives -How pregnancy and childbirth affected my…

From the archives – How pregnancy and childbirth affected my j pouch

Prevalence of ‘pouch failure’ of the ileoanal pouch in…

Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis

How long do pouches last?

From the archives -the launch of the Red Lion…

From the archives – the launch of the Red Lion Group

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The Red Lion Group is a UK registered charity number 1068124