Stories - Page 3 of 16 - J Pouch support charity

St. Mark’s Hospital relocation to Central Middlesex is complete

St Mark’s completes a ‘remarkable journey’ marked by unveiling of plaque by Sir Tom Troubridge

By Christopher Browne – Roar! Editor

It’s official! St Mark’s at London’s Central Middlesex Hospital is finally open for business.

Actually, it’s been open for business and operating as the new St Mark’s (sharing duties and departments with the ‘old’ St Mark’s at Northwick Park, Harrow) for almost three years.

However, last week all the key figures behind the move held a buoyant, good-humoured opening ceremony at this clean, clinical ultra-modern hospital site in central London’s Park Royal.

The new St Mark’s consultants, surgeons, research specialists, doctors, nurses, support staff, former patients and support groups mingled with distinguished St Mark’s consultants from the past and several guests headed by the local MP Dawn Butler, Labour MP for Brent East, and the Labour peer Baroness Pilkeithley.

In her introduction, Pippa Nightingale, CEO of the London North West University Healthcare Trust, praised the activities of the Red Lion Group, comments that were greeted with a flurry of applause from the audience. Then several speakers reviewed the hospital’s achievements of the past three years, which Sir Tom Troubridge, Chairman of the St Mark’s Hospital Foundation, referred to as a “remarkable journey”.
(See below for full details of Speakers)

Suddenly the mood changed when we were invited to lunch. Most of us have our own take on hospital food, but this time it was different – a lavish spread that would do credit to anything from M&S (perhaps some of it came from there!).

The good humour was spreading and the by-now cheerful throng was divided into groups for a series of guided tours of the hospital’s new departments, some of its streamlined, recently-installed equipment – and many admiring glances at the building’s radical design features.

Finally, we all assembled in the main atrium where a commemorative plaque was unveiled by Sir Tom Troubridge.

See Pictures from event below.

Plaque Group
Plaque Group
John Nichols & James Thomson
Plaque Group
Jason Bacon & Sir Tom Troubridge
Pippa Nightingale & Dawn Butler
James Thomson & John Nicholls
Simon Gabe, Dawn Butler – intestinal rehabilitation
Siwan Thomas Gibson
John Nicholls & Robin Kennedy
Sir Tom Troubridge
Gary Bronziet, Chris Browne & David Davies (Red Lion Group)
The St. Mark’s Plaque

Speakers in details :-

How and why St Mark’s Hospital Moved
Professor Omar Faiz – Medical Co-Director St Mark’s Hospital
What has been Achieved in the last three years?
Miss Carolynne Vaizey – Medical Co-Director St Mark’s Hospital
What does the future hold?
Professor Siwan Thomas Gibson – Incoming Medical Director, St Mark’s Hospital & Mr Ian Jenkins – Incoming Deputy Medical Director, St Mark’s Hospital
A Remarkable journey
Sir Tom Troubridge, Chairman of the St Mark’s Hospital Foundation.

News

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!955 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

News

AGM 2024 Report

The Annual General Meeting of the Red Lion Group took place on 25 June 2024. The minutes of the meeting and the Chairmans report can be downloaded below, as well as a copy of the proposed CIO constitution which was ratified at the meeting.

AGM 2024 minutes

Download Now!344 Downloads

AGM Report 2024

Chairmans AGM Report 2024

Download Now!505 Downloads

Proposed CIO Constitution 2024

Download Now!483 Downloads

Any questions on the contents should be submitted to the Chairman at info@pouchsupport.org

David Davies
RLG Chair

Events

Our next webcast – featuring Janindra Warusavitarne and Ben…

Our next webcast – “Surgeon / Patient a special relationship” – featuring Janindra Warusavitarne and Ben Barbanel

Our next webcast will be taking place on Wednesday 10th July 2024 at 7:30 pm (BST) and will feature Janindra Warusavitarne, the renowned St. Mark’s colorectal surgeon. Janindra is one of our most popular speakers and many of you will know him personally, or may have seen him on a previous webcast – speaking about advances in pouch surgery. On this occasion, the focus will be on the importance of the surgeon/patient relationship.

Also taking part will be Ben Barbanel, a Red Lion Group member, who was fortunate to have had his pouch constructed by Janindra about 5 years ago. Ben was honoured to have been invited to speak at the annual conference of the European Society of Coloproctology (ESC) in September 2023 on the subject “What do the public expect from surgeons”?

Janindra commented “The concept of shared decision making is vital to ensure that in these challenging times we as clinicians hear what patients have to say and how the services we provide can ensure that their quality of life is also improved, particularly in the context of chronic diseases“

We expect this to be a very popular and fascinating webcast with plenty of time for the attendees to put their own questions to both Janindra and Ben.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Events

Dr Sonya Frearson talks “Psychological impact of bowel surgery”…

Dr Sonya Frearson talks “Psychological impact of bowel surgery” in our next webcast

Following on from our highly successful webcast featuring Ellie Bradshaw, next in our series of live webcasts will take place on Friday 21st June at 5:00pm and will feature Dr. Sonya Frearson, consultant clinical psychologist and head of the St. Mark’s Hospital Psychological Medicine Unit (PMU). Within the Psychological Medicine Unit (PMU) she is developing psychological support for St Mark’s gastroenterology patients by gradually embedding specialist practitioner psychologists into St Mark’s multi-disciplinary care teams. You can expect the Q&A to be very interesting providing an opportunity to discuss the psychological impact of undergoing and living with major bowel surgery.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Events

Updated – Ellie Bradshaw talks “Biofeedback” in our next…

Ellie Bradshaw talks “Biofeedback” in our next webcast

Updated 30 May 2024

The latest webinar in the RLG 2024 series took place on 29 May with Ellie Bradshaw talking about Biofeedback, a unique method of pouch emptying. Over 50 pouchees attended the event from the comfort of their own homes via zoom. Ellie is a highly experienced nursing specialist who used to be in charge of the Biofeedback unit at St Mark’s Hospital. She took a sabbatical to work at the Princess Grace Hospital in London and has now returned to St Mark’s to join the highly experienced and award winning pouch nurse specialist team. Her presence will add considerable capabilities and expertise to a team which is already world class.

Ellie’s passion for helping pouchees was evident as she carefully walked us through the various ways in which pouchees can act and exercises they can do to improve and preserve their pouch function through control and strengthening of their pelvic floor. As well, she provided information on creams and medical devices which are available to pouchees and which can help to alleviate some of the common pouch issues, from which many of us suffer to a greater or lesser extent.

In a lively and extended Q&A session Ellie was able to answer both broad and very personal pouch-related topics as diverse as sex for pouchees, night time incontinence, butt creams, stool thickeners, anus and lower back pain, how to achieve full emptying, probiotics, pelvic floor exercises and investigations when the pouch is not functioning well. The recording of the event is available on our YouTube channel here.

This was a compassionate and comprehensive talk packed full of practical tips and suggestions and some humour along the way to emphasise the messages. Another brilliant event from Ellie, who is a long-term supporter of the RLG charity, having been delivering talks for us since 2006. We are indeed grateful for all her support and delighted to have her back at St Mark’s.

Thank you to all the attendees for such a great series of questions.

The next webinar in the 2024 series will take place on Friday 21 June at 5pm (BST) when Dr Sonya Frearson, Consultant Clinical Psychologist and Head of the St Mark’s Psychological Medicine Unit will talk about psychological issues associated with surgery and recovery. Please register beforehand at pouchsupport.org/events/ to receive the dial in link.

David Davies
RLG Chairman

You can view the recording of the webcast by Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Following on from our highly successful webcast featuring Prof John Nicholls, our next zoom webcast will take place on Wednesday 29th May at 7:30pm and will feature Ellie Bradshaw. A lively and exuberant speaker Ellie will let us into the secrets of biofeedback – a unique method of pouch-emptying. Ellie, who recently returned to St. Mark’s Hospital following a spell at the renowned Princess Grace Hospital in London, says she thrives on helping people manage their bowel and pelvic floor symptoms. Those traditional pelvic floor exercises will never be the same again! Ellie has spoken at previous Red Lion Group events and is one of our most popular speakers.

Attendance is FREE and open to all, but prior registration is required. You can register using button below.

and don’t forget to checkout pouchsupport.org/events for details of other upcoming Red Lion Group online events.

You can view the recording of the webcast by Prof John Nicholls on the subject “40 years of colorectal surgery” on our Youtube channel here

News

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!

News

Celebrating membership milestone for J Pouch support facebook group

Celebrating membership milestone for J Pouch support Facebook group

Amanda Nash does not give much away on her Facebook profile. She is a Senior Project Manager for a global software development company and lives in South Lincolnshire. But she has something very special which marks her out as “rare” and which identifies her as one of us. Amanda has an ileo-anal pouch which she has had for 29 years and for most of that time she has cracked on with life without any non-medical support. She is a member of the Red Lion Group and it was there she noticed references to the J Pouch Support (UK Specific) facebook group and decided to join up. As chance would have it, Amanda is the 1,500^th member of this small but perfectly formed group and offers us the chance to celebrate this membership milestone for this super-supportive group of pouchees.

Amanda writes that she has indeed been on a journey but considers herself very lucky and that she and her pouch have had many happy years together and continue to do so. She comments that blips are to be expected of course and when they do happen it is great to be a part of a supportive community of fellow pouchees who can help out with support and advice. Amanda is full of praise for the facebook group – “the support from the group is already wonderful and matches my current thoughts – I try to self-care when I can and only seek help when absolutely needed from the NHS – who have been amazing. I am a very grateful patient for them giving me my life back”. She adds that the group helps to keep her positive and strong, a fitting and lovely tribute to this special community. Amanda lives in South Lincolnshire, an area of the country where pouch surgery is no longer undertaken, with presumably a lack of surgical hands-on knowledge about long term, post operative pouch care. This makes the facebook group all the more valuable in providing hints and tips and providing reassurance that Amanda and pouchees everywhere that they are not alone.

About the J Pouch Support (UK Specific) Facebook Group

The J-pouch support (UK specific) group was founded some 10 years ago by two pouchees – Sam Wainwright and Sahara Fleetwood-Beresford. Sam is still a moderator and was joined some 7 years ago by Gary Bronziet and David Davies, who are respectively the Membership Secretary and Chairman of The Red Lion Group, a pouch support charity which is very closely affiliated to St Marks Hospital in London, where the operation was first conceived by Sir Alan Parks and Professor John Nicholls. With over 1,500 members, the group continues to grow at a pace and is now the largest pouch support Facebook group outside of the United States.

The name J Pouch Support (UK Specific) is just a little misleading as we have members with all pouch configurations (W-, S- and J-) and although the name implies membership is limited to UK-based pouchees, in practise the group has a truly global membership, not unlike the Red Lion Group. Not surprisingly, the most common location for members is the United Kingdom but we have members from all over the world including USA(54), Ireland (26), Italy (9), Australia (6), Canada (6), India (6), South Africa (5), Gibraltar (4) and Switzerland (4)

J Pouch Support (UK Specific) facebook group membership hits 1,500 in April 2024

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. In the last 60 days, at time of writing, there had been more than 2 posts per day with 1,565 posts from 1,171 active members. This gives 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. Any correlation to the Coronation Street schedules is (probably) mere chance, but you never know!

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.

In recent years Gary Bronziet has added an option to view the Facebook Group activity directly from the Red Lion Group website. See pouchsupport.org/forum. However, to post to the group, or respond to posts, it is necessary to submit a join request to the 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 Amanda and here’s to the next 1,500 members!

Best wishes

David Davies
Gary Bronziet
Sam Wainwright

Facebook

Click on button to go to Facebook group and submit a join request.

Events

J pouch forum update and register for next event

J Pouch forum update and register for next event

Red Lion Group chairman, David Davies, reports on our most recent online J-pouch forum

The latest RLG pouch forum took place on Monday 1 April at 7.30pm via the magic of zoom and with IT guru and RLG Membership Secretary Gary Bronziet pressing all the right buttons. RLG Chairman David Davies was in the Chair and welcomed 20 or so pouchees and potential pouchees who were joining from locations as far afield as Texas and New York to the West, Moldova to the East and Bolton from oop north. The great advantage of online meetings is that people can join from the comfort of their own homes without having to travel.

David emphasised that the meetings were completely confidential with no recordings and no minutes and are a “safe space” to discuss pouch-related matters in confidence. There is no prior agenda – the topics are proposed on the night.

A lively meeting ensued with people contributing to vibrant discussions on a wide variety of pouch-related topics.

Treatments for butt burn, how to reduce night-time frequency of bowel movements, what to do if your surgeon (who is not a pouch expert) recommends that your 30-year old pouch be disconnected.

The virtues of having the second and third operations conducted in one go (proposed by one attendee who was concerned about recovery times alongside work commitments).

We discussed potential correlations between having a pouch and getting pancreatitis (inflammation of the pancreas) [for information, there are no known correlations for the pouch per se, but if you have had UC then you are more likely to get pancreatitis apparently].

We also touched on the benefits of the FODMAB diet for encouraging good pouch function and the different types of pouch irrigation methods that are available to enable pouchees to fully empty.

One attendee is contemplating a pouch after having their large intestine removed and was greatly impressed by the support and the friendliness of the meeting and the amount of relevant and real-life information shared by the participants, which will help them with their decision. All in all, a very busy and informative evening!

The next RLG pouch forum will take place on Monday 6 May (also a bank holiday) starting at 7.30pm. Please save the date in your diaries and register beforehand below to receive the dial in details.

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

David Davies
RLG Chairman

PS. See pouchsupport.org/events for details of other upcoming events, including the webcast featuring Professor John Nicholls on Tuesday 16th April.

News

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!878 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

St. Mark’s Hospital relocation to Central Middlesex is complete

St Mark’s completes a ‘remarkable journey’ marked by unveiling of plaque by Sir Tom Troubridge

From the archives -How pregnancy and childbirth affected my…

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

AGM 2024 Report

AGM 2024 Report

Our next webcast – featuring Janindra Warusavitarne and Ben…

Our next webcast – “Surgeon / Patient a special relationship” – featuring Janindra Warusavitarne and Ben Barbanel

Dr Sonya Frearson talks “Psychological impact of bowel surgery”…

Dr Sonya Frearson talks “Psychological impact of bowel surgery” in our next webcast

Updated – Ellie Bradshaw talks “Biofeedback” in our next…

Ellie Bradshaw talks “Biofeedback” in our next webcast

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?

Celebrating membership milestone for J Pouch support facebook group

Celebrating membership milestone for J Pouch support Facebook group

About the J Pouch Support (UK Specific) Facebook Group

Demographics and activity

The J Pouch

J pouch forum update and register for next event

J Pouch forum update and register for next event

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