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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.

Register


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:

DescriptionMean failure rate (%)* Range (%)
Pouches less than 5 years old53-10
Pouches between 5 and 10 years old54-7
Pouches greater than 10 years old97-16
Overall average pouch failure rate65-8

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

Related Posts

  • Professor John Nicholls guest speaker on Red Lion Group webcast
    Date
    May 14, 2021
  • Ulcerative Colitis with pouch surgery
    Date
    September 4, 2021
  • Ileoanal Pouch Report 2017
    Date
    September 6, 2018

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 1,500th 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.


Amanda Nash – 1,500th member!

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. 

Register for next forum

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
ROAR – Issue 1: Summer 1994
Download Now!744 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 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/

Related Posts

They came they saw, and heard all about living with a j-Pouch

14 May 2019

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


Events

Prof. John Nicholls to kick-off RLG 2024 webcast season

Prof. John Nicholls to kick-off RLG 2024 webcast season

We are delighted to announce that we will be kicking off our webcast season for 2024 with a talk from Professor John Nicholls, considered to be the the father of the ileo anal pouch (J Pouch).

The Red Lion Group will be repeating its popular webcast series in 2024, providing an opportunity for J Pouch patients to see and hear from the foremost experts in the field of J-pouch surgery and the challenges of living with a J-pouch. As in previous years, each talk will be followed by an interactive Q&A so a chance to put your questions to the experts.

The first event this year will be on Tuesday 16th April at 7:30 pm (BST) and will feature the eminent colorectal surgeon Professor John Nicholls, who will need no introduction to many of you. Not only was he the co-inventor, with SIr Alan Parks, of the procedure for ileal-pouch anal anastomosis (IPAA), but he has been responsible for the creation of more pouches than anyone on the planet earning him the sobriquet “the pouch king“.

Professor John Nicholls is a retired British colorectal surgeon, Emeritus Consultant Surgeon at St Mark’s Hospital London and Professor of Colorectal Surgery at Imperial College London. He is also a Patron of the Red Lion Group.

The Red Lion Group webcasts are FREE and open to all, but pre-registration is required to receive the meeting link. You can register using the “Register now” button below.

View Recording


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

Stop Press! Updated at 13:20 on 16 April. The last time I checked, we had 98 people registered and our meeting capacity is 100 For those unable to join the Zoom meeting, the webcast will also be Streamed Live on the J Pouch Support (UK Specific) Facebook group. If you are not currently a member, you can join here. A recording of the webcast will also be available on our Youtube channel youtube.com/@PouchSupport


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 Red Lion Group (RLG) J pouch forum took place on Monday 5th February and was chaired as usual by RLG Chairman David Davies, ably assisted by Gary Bronziet, RLG Membership Secretary.  There were 20 attendees, a mixture of familiar regulars and a smattering of new pouchees and potential pouchees who were joining for the first time.  The sessions take place via the online meetings platform Zoom, which means people attend from the comfort of their own home and from anywhere in the world.  Indeed, on this occasion, we had two attendees dialling in all the way from the USA.

The sessions are informal and are not recorded or minuted – anything said in the zoom stays in the zoom.  This helps to put people at their ease to share personal details of their pouch experiences and issues.  It is a friendly and very supportive group and many of the attendees gain valuable insights and support as well as comfort to know that they are not alone. 

The topics are suggested on the night and there is usually a smattering of common pouch themes.  On this occasion it was a packed agenda with topics discussed including

  • Managing blockages
  • Tactics to prevent night-time toilet trips
  • Osteoporosis and pouches
  • Vitamin D deficiency in pouchees
  • Post-op recovery time before driving and lifting weights (presumably not at the same time!) 
  • Tactics to thicken up pooh
  • Tactics to avoid leakage especially at night
  • All things wind
  • And finally, we had a potential pouchee on the call who asked the question – whether or not pouch surgery had been a good decision?

These topics generated lots and lots of comment and discussion as you can imagine – so much so that we ran out of time to discuss wind.  So that topic will be number one on the list for next month’s meeting, along with other pressing pouch-related topics, I’m sure. 

The next zoom pouch forum will take place on Monday 4th  March, starting at 7:30 pm.  Attendance is open to all, but please register beforehand to receive the meeting link.    You can find the registration link and details of other upcoming events at pouchsupport.org/events/ or tap on button below.

Events

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

David Davies
RLG Chairman


News

Covid-19 related GI symptoms in ileoanal pouch & stoma…

Covid-19 related GI symptoms in ileoanal pouch & stoma patients

The St Mark’s Hospital Stoma and Internal Pouch care team is in the process of conducting a study on gastrointestinal effects of Covid in stoma and pouch patients and they have asked us to share the link to their online survey.

See the link below for further information and to take part if you choose to do so.

Survey

Stories

The remarkable story of the world’s first pouch patient

The remarkable story of the world’s first pouch patient

Roar! editor Christopher Browne speaks to Haresh Ruparelia, son of the original ileo-anal pouchee

Remember the turbulent 1970s? Some of us do and RLG’s new treasurer Haresh Ruparelia certainly does even though he was a mere toddler at the time. He also recalls the events of that decade for a completely different reason. In 1972, Haresh, his parents and his two young siblings were forced to leave their home, jobs and schools in the African republic of Uganda during the dictatorship of Idi Amin. “After considering Fiji at one point, my father Pravinchandra (known as Pravin) moved the family to the UK. He managed to find work quite quickly and chose to settle in Ilford, East London,” said Haresh.


“a desperately difficult
period for my parents”

Haresh Ruparelia


Admitted to hospital

Then fate struck the family a second time when in 1974 Haresh’s 35-year-old father was diagnosed with ulcerative colitis (UC). “His symptoms soon became chronic and physically he had gone from being a fit, strong and healthy young man to someone who was frail, very underweight, unable to work and seemingly staring death in the face,” he said.

“As a child I was protected from the seriousness of it all, but knowing what I have since found out, it must have been a desperately difficult period for my parents,” Haresh explained. Pravin was first admitted to St Mark’s Hospital, then based in London’s City Road in 1974. However, as his symptoms worsened, he was re-admitted two years later in 1976. In July of the same year, he had the first part of a radical new operation. It was of course the first stage of an ileo-anal pouch – shaped out of the small intestine to replace the need for the large one – which had been created by the hospital’s consultant surgeon Alan (later Sir Alan) Parks. The operation, which was also performed by Mr Parks, replaced the more conventional option of an ileostomy. Pravin was the first of a group of five patients at St Mark’s and the London (later Royal London) hospitals to have the revolutionary surgery. Just over a year later, Pravin had his final closure and became the proud owner of a pouch.

“This pioneering surgery gave my father and the family a new lease of life. Following surgery my father’s physical condition recovered significantly and as a result he was able to start living a normal life again. “He was able to return to working full time, earn a decent living for the family and fully enjoy social activities too. This in turn allowed the entire family to live normal lives for the many years that followed,” said Haresh.

“My father’s experience of the pouch was generally good. He had to use a catheter to empty the pouch and therefore needed to keep equipment with him wherever he went. He preferred to use disabled facilities wherever they were available and took care regarding the size and timings of meals when out and about,” added Haresh. “I suppose that to him these were trivial inconveniences in light of the condition he had suffered prior to surgery – and preferable to having an ileostomy.”


“Pouch surgery was extremely successful for my father and for that the family will forever
be indebted to the late Sir Alan Parks and his team”

Sir Alan Parks


First pouch patient

After those first five pouch operations, Mr Parks and his senior registrar, John Nicholls (later Professor Nicholls and a patron of RLG), wrote an article titled ‘Proctocolectomy without ileostomy for ulcerative colitis’ 1 for the British Medical Journal. In the report, Pravin is referred to as the first case to have a pouch fitted. Commented Haresh: “A point made in the BMJ article about the importance of temperament was perhaps applicable in my father’s case. He was a very philosophical person and not shy. This perhaps allowed him to put himself forward as one of the early candidates for surgery and subsequently helped him to cope with having to use a catheter. “The other significant factor that helped my father cope with his illness and the surgery was the presence and support of my mother. She coped with so much whilst Dad was ill and always remained by his side, providing practical and moral support through the darkest hours before the surgery in 1976 and thereafter when living with the pouch, the ileostomy and the related issues that arose from time to time.”


“This pioneering
surgery gave my
father and the family
a new lease of life”

Pravin Ruparelia


Mainly incident-free

And Pravin’s life with a pouch was mainly incident-free for almost 40 years until 2014 when he developed pouchitis and due to complication with the pouch needed an ileostomy until he died in January 2022 aged 82.

“Overall, pouch surgery was extremely successful for my father and for that the family are grateful and will forever be indebted to the late Sir Alan Parks and his team, Professor John Nicholls and everyone involved for all the hard work in pioneering the surgery, providing treatment and support to patients pre- and post-surgery and for sharing the knowledge with the wider medical profession and patients. “Dad could have gone to beautiful, sunny Fiji when he left Uganda… but he came to England, had the fortune of being referred to St Mark’s Hospital and the rest is history,” added Haresh.

  1. You can download a copy of this historic paper below. While researching his fathers pouch history, Haresh came across correspondence which confirmed that his father was indeed the patient referred to in that paper as Case number 1.
    ↩︎
Parks Nicholls Paper 1978
Parks Nicholls Paper 1978
Download Now!1799 Downloads

AND A VERY HAPPY FOOTNOTE: RLG is delighted to welcome Haresh Ruparelia as our new treasurer!

A version of this article first appeared in ROAR! issue #66 – Winter 2023. 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.

Related Posts

  • What’s the lifespan of a J pouch?
    Date
    August 8, 2023
  • Gold and silver for St Mark’s pioneering pouch care team
    Date
    April 20, 2023
  • Ileo-anal Surgery – A Guide for Patients
    Date
    April 11, 2022

Stories

One member’s pouch journey

One member’s pouch journey

Red Lion Group member, John Weight, describes his journey from UC sufferer to pouch recipient (hospital waiting lists were not the only problem!) – and recounts some of his pouch adventures.

As John Weight points out: ‘Surgical procedures and patient outcomes have undoubtedly improved since I had my pouch operation. And new pouchees are now far less likely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions that I did. In short, the patient journey today tends to be much smoother than before.’

John outside his and Debbie’s over-water bungalow in the Maldives
John and Debbie Weight enjoy a Maldivian excursion
Maldives moment: John Weight relaxes on the beach

It all started in 1979 when I was diagnosed with UC, or was it Crohn’s? It took doctors 10 years to decide before they erred on the side of ulcerative colitis in all probability. My bowel healthcare problem had been getting progressively worse. I was down to 9st. 4lbs and a daily dose of steroids was not having any apparently beneficial effect. Surgery was suggested several times but a colostomy bag or ileostomy for an active young man was not an acceptable option for me.

In 1988, I was referred by my local consultant to Central Middlesex Hospital for an in-depth internal examination. At the end of my stay the specialist consultant came to my bedside and told me that my large bowel lining was showing signs of dysplasia (a pre-cancerous stage) and that surgery was now very strongly recommended. I was stunned but I still expressed my reluctance to go down this path. However, he went on to tell me of a relatively new surgical procedure involving the formation of an internal ‘pouch’ instead of an ileostomy.

This seemed too good to be true. He asked me if I would agree to a referral to the consultant surgeon John Nicholls at St Mark’s Hospital, then based in London’s City Road. As the senior registrar to Sir Alan Parks, he was one of the pioneers of this technique, later becoming a professor and, of course, a patron of the Red Lion Group.

Several months passed before I travelled to City Road to meet Mr Nicholls. He was very direct in his approach and very thorough in detailing the surgical procedure involved supported by some freehand sketches – a wondrous piece of re-plumbing and not without risks that he was also careful to explain.

Statistics at the time recorded a 1-in-10 chance of failure – an acceptable risk I thought, not that I had much choice now, so an in-patient stay was booked for the stage one operation – a colostomy and the construction of a J-pouch. The stage two closure would follow two months later. I could just about cope with that! My employer agreed to give me four months’ paid leave so all I had to do now was wait.

My first in-patient booking was postponed so all plans and arrangements had to be stood down – which meant another long wait.

Bitten by a parasite

In the meantime, I thought I would spend a weekend in Oxford visiting friends and taking my mind off the impending ordeal and perhaps enjoying a curry and a few beers. Unfortunately, it was not the curry that put me back in hospital again but the cryptosporidium parasite that had been piped in that weekend from Farmoor Reservoir which supplies Oxford’s water.

The news bulletin at the time advised children and the elderly to take extra care as the “parasite can cause gastrointestinal illness with diarrhoea in humans”. So, for someone like me with UC it was a disaster!

I spent two weeks in High Wycombe General Hospital on 40mg of intravenous prednisolone before my condition was brought under control. Once back on my feet and feeling better I returned to Oxford – this time to include a light game of tennis. But it wasn’t long before the ambulance was on court – I had ruptured my left Achilles tendon! I put this rather unfortunate accident down to the fact that my muscles and tendons must have been weakened by the earlier high doses of corticosteroids.

So, off to Oxford’s John Radcliffe Hospital for a knee-high plaster cast with an embedded high heel to reduce the strain on the tendon. It would be some months before this would be removed and my rescheduled bowel operation was only a few weeks away!

The taxi arrived alongside the entrance steps to St Mark’s Hospital. The driver jumped out and opened the rear door for me as if this was a celebrity arrival – get me out of here! I struggled to extract myself from the rear of the taxi holding a pair of aluminium crutches loaned by John Radcliffe Hospital.

Once afoot there was no stopping me as I hopped up the entrance steps. There was no going back! The pre-admission nurse looked a little perplexed. I tried to pretend this was just another routine hospital visit – I’m a regular now, well into double figures since the start of my UC. She filled in the requisite pre-admission forms and checks and then disappeared.

Half an hour later she returned – “I’ve spoken to the surgical team, and they can rig up a hoist for your [plastered] leg”. It seemed like a marathon getting this far but I was ‘in’, and Mr Nicholls would very soon be scrubbing up.

A colon-free future

And so it came to pass that I slowly emerged into a new world without a colon, a tummy with a railway track of staples down the middle and tubes coming out of every orifice! “Are you awake Mr Weight – would you like a sip of water”? Within hours I was being escorted around the ward with one crutch and a saline drip instead of the other to avoid any risk of deep vein thrombosis.

My progress was good, and I was discharged after two weeks with ample supplies of colostomy bags and stoma templates. I bought a pair of high-waisted trousers to make life a little more comfortable. The promised two-month wait for the return leg became three before I was finally booked in for the closure. At last, I would be ‘normal’ again, all joined up and no plastered leg encumbrance this time.

The next 10 days in St Mark’s passed fairly quickly – getting used to my new bowel configuration and getting fit again by walking up and down the stairs to the courtyard garden as often as I could with the occasional loo stop. The nursing staff omitted to tell me about the pouch stool acidity caused by the residual gastric acid, so I was a little sore initially. The acidity would have been neutralised by my large bowel had it been present. So, this was the time that meticulous cleanliness and barrier creams entered my life.

Two months after being discharged and I was back for a post-op review. I had been getting leakages, typically when out shopping. My pouch output seemed quite fluid. The consultant thought I might have pouchitis and prescribed 500mg Metronidazole suppositories. I have been on them ever since – over 33 years. Without them I simply could not survive. For years now I have been using two to three suppositories a week on average – they seem to keep the inflammation in check even though repeated use of antibiotics is generally not recommended.

Some years later another consultant suggested a two-week blitz of Ciprofloxacin and Metronidazole tablets to completely remove the inflammation rather than maintain it at a low level. However, within five days of completing this regimen the pouchitis had returned.

For the first 10 years of living with my pouch I was not troubled with it at all. I put weight back on, I travelled all around the world, played football, windsurfed, skied, and swam – life was back on the fast track save for a few unpleasant derailments – the dreaded adhesions and attendant agonising bowel blockages. Most times these would sort themselves out within a few hours or overnight. However, on four occasions a hospital in-patient stay was necessary – twice in Luton, once in Walsall and once in Male in the Maldives.

The Walsall stay was the scariest – no bowel movement for seven days. The surgeon was seriously considering operating when suddenly there was some movement. I think it must have been the onset of panic. I can’t say how happy I was to get out of there unscathed! The Maldives experience does merit some mention as the costs were covered by a Red Lion Group recommended insurer at the time.

The episode occurred the day before we were due to leave Komandoo Island to return to the UK. After a night of severe colicky tummy pain my wife Debbie called the island resort reception for a doctor. The nearest was stationed on a larger island nearby, a 30-minute high-speed motorboat away. On arrival the doctor administered some painkillers and muscle-relaxing medication and arranged for a transfer to a hospital in Male, the capital of the Maldives.

I had to go back on the motorboat with the doctor to the neighbouring island where I would catch the scheduled seaplane flight to Male. Debbie frantically packed our suitcases while I looked on helplessly. Four of the resort staff turned up with a wooden door that had just been removed from its hinges – this was the best they could do for a stretcher! – I was loaded on board and lugged along the sandy track through the palm trees to the jetty, stopping along the way for each of the bearers to change corners and swap load-bearing arms.

Overhead, the sun burned down both blinding and cooking me on this makeshift hotplate. By the time we reached the jetty the colicky pains had returned. I was carefully laid down to rest while my wife settled the hotel bill, and the boat was prepared for departure. I don’t remember much about the sea or air journey to Male, just the acute pain and the concerned faces of helpers and onlookers. At the airport, a water taxi and then an ambulance ride got me to the allotted hospital.

I was put on a drip and given some more medication and allocated a room with two single examination beds but no bedding. My wife checked in at a nearby four-star hotel – the one the BA pilots used as it turned out. By 5pm that day my bowels started moving again and I began to feel a lot better – even so I had to spend the night at the hospital for observation. The other spare bed in my room was in continual use with the comings and goings of local patients and their families – I think it must have been an A&E side ward.

At one time a pregnant woman was there with an extended family of about eight people. It wasn’t possible to get any sleep until about 1am when everyone had eventually filtered away into the night. The next morning, I needed to get discharged quickly – as there was every possibility I could still catch my 10:00am BA flight home and return to the original holiday schedule. A young man from a local travel service company that our tour operator used to facilitate the transfer of its clients to and from the outlying islands turned up early to help me with my discharge. He had visited me in hospital the night before and was thus au fait with my predicament. He was an absolute star – helping with the discharge process, arranging the preparation of my hospital bill, and getting the medical report written up for my insurer – and all before 9:00am!

A truly amazing achievement! I grabbed all the paperwork and ran with my supporter to a waiting cab. Debbie was there with our luggage in the boot. We rushed to the airport and ran to the BA check-in desk. They were waiting to rush me through as my wife had chatted up the BA pilots the night before and explained my predicament.

I got to my seat and looked around at all the people meticulously stowing away their hand luggage as if nothing had happened. I had just travelled through some seemingly highly eventful time-warped journey and been deposited in seat 36B.

“Did you enjoy your holiday,” asked the lady seated on the aisle side of my seat. “Beautiful place, lovely people,” I recounted – “still, it will be good to get home”.

Footnote: It’s worth highlighting the much improved surgical procedures and patient outcomes since 1989. And that new Pouchees are unlikely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions as John did.

A version of this article first appeared in the Summer 2016 issue of ROAR! 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.

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