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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.

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!1902 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
  • Ileo-anal Surgery – A Guide for Patients
    Date
    April 11, 2022
  • Gold and silver for St Mark’s pioneering pouch care team
    Date
    April 20, 2023
News

How one pouchee maintains good pouch function

The banker with the magic touch – how one pouchee maintains good pouch function

It was some upsetting news from his consultant that prompted Ben Barbanel, a City banker and Red Lion Group member, to launch his own unique pouch treatment plan to maintain good pouch function. Did it work? Read on and you’ll find out….

Have you heard the one about the five-year pouchcare plan? You haven’t – well have a word with Red Lion Group member and pouchee Ben Barbanel and he will tell you all about it.

As Ben says: “I am delighted and proud to tell my friends, colleagues and fellow pouchees about the self-discovered regime I have put together over the past five years by taking little snippets of advice and help from a wide and varied array of different sources.”

Ben Barbanel

So what exactly are Ben’s sources? They are two Facebook sites: the J-pouch support group (UK specific) which is hosted by the Red Lion Group (RLG), and the US-based Facebook pouch support group; RLG’s monthly Zoom-led personal advice forums; and the “wonderful pouch nurses” and medical staff at St Mark’s Hospital, says the City banker.

In fact Ben’s story begins in 2002, when after a spell of ulcerative colitis (UC), he had a full colectomy followed by an ileorectal anastomosis1 in 2003 done by the legend John Nicholls.

He had “no issues at all until 2018” when pre-cancerous cells were discovered in the lining of his rectum. Those tests also marked the birth of Ben’s five-year plan.

Following medical advice, Ben’s rectum was accordingly removed. “I was so lucky to then have a one-step pouch made and connected by the talented lead consultant surgeon at St Mark’s, Janindra Warusavitarne.” [Janindra is an RLG patron].

Janindra Warusavitarne

Post-op Ben heard the first two pointers of his pouchcare plan. “St Mark’s consultant nurse, Zarah Perry-Woodford, told me that, as a pouchee, if I ate the same cheese sandwich every day for breakfast, lunch and dinner, my output would be different each time I went to the loo”. The second was when Ben’s pouchcare team said that – realistically – it would take him up to five years to see the “full working effects and stabilisation” of his pouch. Prophetic words indeed!

Here then are the highlights of Ben’s successful formula:

  • Six days a week he takes two sachets of Vivomixx probiotic – “I understand this is effectively the original De Simone formula that was most extensively trialled and tested for its efficacy in the treatment of IBD, IBS etc. (source : https://en.m.wikipedia.org/wiki/De_Simone_Formulation)” he says.
  • Ben takes one 400mg capsule of potent green tea extract daily – “I see this is routinely recommended in the US by a leading pouch gastroenterologist,” he says. 2 (see footnote)
  • He uses a warm water enema most times he visits the toilet – if convenient – to “completely empty my pouch. I always do this last thing at night before I go to bed and it enables me to sleep uninterrupted for probably five out of seven nights a week.”
  • Finally, Ben uses a Medena catheter after the enema to make sure the pouch is completely empty.

Says Ben: “I’m certain that this regime has given me a healthy pouch, with not one bout of pouchitis since the pouch’s formation. It also enables me to control my bowel motions very easily. My consultant is always very happy with how the pouch looks when I have an endoscopy, and is also very happy with my regime.”

As Ben somewhat sagely points out: “This is just one patient’s testimony and clearly doesn’t constitute medical advice and, while I am not a doctor or nurse or in any way medically qualified, this regime seems to work very well for me. And I would always recommend discussing any changes to your own regimes or plans with your medical team. Good luck fellow pouchees!”

And how will Ben celebrate his five-year pouchee-versary? Uniquely, of course. In September this year he and Janindra Warusavitarne will deliver a lecture titled“What do the public expect from surgeons” at the European Society of Coloproctology’s annual conference in the Lithuanian capital of Vilnius. 

(You can read their report in the Winter 2023 issue of Roar!) 

FOOTNOTES

1 ileorectal anastomosis (IRA) is a surgical procedure which involve removing part or all of the colon (the large intestine) and joining the ileum (the last part of the small intestine) to the rectum.  Refer https://www.sciencedirect.com/topics/medicine-and-dentistry/ileorectal-anastomosis

2 RLG member Stefan Presland commented, “I assume the article is referring to EGCG green tea extract. I’ve been taking this on and off for a number of years and discovered this BBC report in my early days of taking it that I’ve always kept in mind: https://www.bbc.co.uk/news/stories-45971416 . I’m possibly being too cautious as a result, but in case any people read the article and decided to to go out and buy some themselves, it’s probably worth noting to only take one 400mg tablet a day and always with food.

A version of this article first appeared in 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.

Stories

What’s the lifespan of a J pouch?

What’s the lifespan of a J pouch?

Have you ever compared your pouch to the famous Joey pouch of a kangaroo? I suspect not and nor have I, writes Roar! editor Christopher Browne.  However it’s an interesting – if slightly far-fetched – comparison and, so far, no one has had one for more than 45 years so we don’t yet know an ileopouch’s precise lifespan. What we do know is that several Red Lion Group members have had their man-made miracles for up to 45 years, as a recent RLG poll shows, so it is interesting to hear their views of long-term pouch behaviour.

Let’s start with RLG member Pam Everitt who has had her pouch for 42 years. She had a Parks pouch fitted in 1981 – five years after that historic moment in 1976 when the first one was created by Sir Alan Parks and Professor John Nicholls at the Royal London Hospital (then known as the London Hospital).

Pam Everitt

Pam noticed the first symptoms of UC (ulcerative colitis) soon after the birth of her first son in 1978. She was treated with enemas and several types of medication including prednisolone and a few years later, to her and her husband Jim’s delight, she gave birth again, this time to a daughter. 

However to Pam’s chagrin the UC flared up again and she was admitted to Cambridge’s famous Addenbrookes hospital near her home in St Ives, Cambs. This time her consultant advised her to have pouch surgery – “it was then a fairly new op” she says.

Pam had a two-stage op which “took a lot of getting used to”. Then the following year – 1982 – Pam and her family moved to Cornwall and her health slowly improved. She used a Medena catheter for two years “and can honestly say I haven’t had any problems since 1982 – 42 years ago”, she says.

“I eat and drink anything I want to and even went on to have a third child, a son, by normal delivery. He weighed a healthy 8lb 3oz!,” she says proudly.

“I lead a normal life, holiday abroad and now enjoy being a granny. I go to the toilet on average four times a day and feel very fortunate that I was lucky enough to be ill at the right place and at the right time and that my surgeon did a good job.” 

Pam recently joined the Red Lion Group. “I felt it would be good to be in touch with like-minded people and it is a great reassurance to know I am not alone,” she says.

Pam’s story is an encouraging one and we at RLG wish her all the very best for the future. Which brings me to a piece of pouch history. RLG member Sylvia Panford is also one of the world’s first pouchees, in fact No 9 in the pecking order.

She was admitted to the London Hospital in 1977 with a serious bout of UC. She was offered a permanent ileostomy but refused. Then her registrar told her about a revolutionary new operation created by a surgeon called Alan (later Sir Alan) Parks. “The first operation went well and I was the proud owner of a stoma,” she says. Parks then carried out a second op to create a pouch. Sylvia had a few complications but the third op was successful and in 1978 – 45 years ago – she was the proud owner of a pouch.

Sylvia Panford

Since then, apart from a few glitches, Sylvia’s pouch has been problem-free. She joined a yoga club and a swimming group and in 1988 (10 years after her final pouch op) she completed a marathon and has done several more. She also joined a walking club and says: “It’s actually a drinking club with a running problem and is known as Hash House Harriers!”

Sylvia moved to Portugal five years ago. “I have had a few small problems but I show the doctors my RLG Medic Alert card and they are able to order me prescriptions which is such a relief,” she says.

As she says now: “A very special thank-you to Sir Alan Parks for creating the pouch.”

One of Sylvia’s fellow patients in the London Hospital was Jean Reed. Like Sylvia, Jean had been suffering from UC and her doctor decided the new ileoanal pouch would be the ideal solution for her as there was also a possible threat of cancer. 

Jean Reed with grand-daughter

And that, ladies and gentlemen, is how Jean became the world’s No 10 pouch patient.

It was during her three-month recovery period in hospital that Jean met Sylvia and they have remained close friends ever since. Like Sylvia, Jean joined the Red Lion Group and still contacts her friend to talk about mutual pouch issues.

“My pouch has been OK most of my life. I’ve had a few blockages but other than that it’s been fine,” says Jean. 

However last year misfortune struck when Jean had a stroke and she now needs to use a wheelchair. “But,” as she says, “the pouch keeps working with no pain and I haven’t had a blockage for two years.”

Janindra Warusavitarne

Janindra Warusavitarne, St Mark’s Hospital consultant colorectal surgeon, says: “The longevity of the pouch is a question I am always getting asked. 

“The answer is we know that about 10 to 15 per cent of pouches will be either removed or de-functioned with a stoma or complete removal of the pouch over a period of 15 to 20 years.
So we assume that the rest are functioning reasonably. “But the reality is that we have never investigated that concept and ultimately as the pouch was created 40 plus years ago we won’t know what the ultimate longevity is for quite some time. 
“The pouch is created to improve quality of life and this is a concept that is very individual and cannot be measured accurately.
“My final words are that in most cases a pouch will last forever (ie a person’s lifetime) but whether it will continue to function in the way that improves the quality of life for an individual is the question we don’t know the answer to.”

See also Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis

A version of this article first appeared in 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.

Related posts

  • Zoey joins the J-pouch set
    Date
    October 18, 2019
  • J-Pouch Fistula Study
    Date
    January 28, 2022
  • J Pouch Support facebook group hits 1700 members
    Date
    February 11, 2025
Events

Summary of guest speakers – J-Pouch webcasts 2021

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)

Following out 2020 highly successful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike.

As you may know, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

Keep an eye out for updates, including additional speakers and dates and times.

We had the pleasure of listening to the following speakers in 2021. We look forward to running a similar series next year. Join us in 2022!

Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Subject: Through the keyhole – latest developments in pouch surgery
Recorded: Wednesday, 5 May 2021. 07:30 pm (London time)

Prof. R. J. Nicholls, Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London

Subject: Evolution of Modern Surgery
Recorded: Wednesday, 19 May at 7.30 pm (London time).

Uchu Meade, Head of Pharmacy at St. Mark’s Hospital.

Subject: Keep taking the tablets: a guide to the best drugs and when to take them.
Recorded: Wednesday, 26 May at 7.30 pm (London time).

Professor Ailsa Hart, Consultant Gastroenterologist, Sub-Dean (St Mark’s Academic Institute)

Subject: Professor Hart will be speaking on the subject “Managing a pouch behaving badly”

Recorded: Monday 14, June 2021 at 07:30 PM (London time)

Jason Bacon, CEO of St. Mark’s Hospital Foundation

Subject: St Mark’s Hospital’s clinical services at Northwick Park, Central Middlesex Hospital and Beyond

Recorded: Monday, 28 June 2021 at 7.30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Gabriela Poufou, Dietician St. Mark’s Hospital

Subject: Healthy eating for Patients with an Internal Pouch

Recorded: Wednesday 4 August 2021 at 7:30 pm (London Time)

To Register for events go to https://pouchsupport.org/events

Petya Marinova, Pouch nurse specialist, St. Mark’s Hospital

Subject: St Mark’s Hospital: Life after the Pandemic

Recorded: Wednesday 22 September 2021 at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Ellie Bradshaw, formerly gastrointestinal specialist nurse at St Mark’s Hospital, now at London’s Queen Charlotte Hospital.

Subject: Crouch for your pouch – key emptying tips

Recorded: Wednesday 13th October at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Subject: Fistulas associated with pouches.

Recorded: Wednesday 8th December at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

For a review of last years Zoom into Summer series webcasts , click HERE.

Events

Pouch forum update and register for next event

Review of latest Pouch forum and register for upcoming Forums and webcasts

Published 10 June 2021

June RLG forum – the best yet! – by RLG Chair David Davies

The series of RLG zoom forums 2021 continued with yet another riveting and rewarding evening of pouch-related chat with a group of like-minded pouchees, a potential pouchee and an ileostomist (just to mix things up a bit).  No ordinary ileostomist though (if there is such a person), this was Barry, the Chairman of the Inside Out Group of ileostomists affiliated closely with St Mark’s Hospital and a valued member of the wider patient community.  

The topics discussed were many and varied, and kicked off with a series of food / diet / nutrition expectations and recommendations for a pouchee eight months after reconnection.  There were excellent comments offered from the attendees in a supportive and constructive manner and which informed as well as supported the group.  Yet another example of how sharing experiences can reassure and support pouchees as they adapt to their new plumbing. 

One member asked about anismus and how she might identify other sufferers and make contact with pouchees with a similar problem.  It was suggested to ask a question of the affiliated J-pouch support (UK support) facebook group, but use more common terms that people might understand.  The J-pouch group has now exceeded 1,000 members and is the largest UK pouch community anywhere on the internet as far as we know.  The ex-head of the St Marks Hospital Biofeedback team, Ellie Bradshaw, will be presenting about bowel emptying issues (amongst other things) at a RLG webcast on 7 July.  

The disappointing news was announced that the medina catheter might well be withdrawn by the manufacturer / distributor (Wellspect) some time in the summer with a further 6-month supply available at current levels of demand.  Gary read out an emailed response from Wellspect which confirmed the news but said the company were actively seeking alternative manufacturers who could maintain continuity of supply. Peter, an RLG regular and medina advocate, voiced concerns and suggested there could be some design modifications to the current medina based on his experiences.  Any budding manufacturers out there?  

There was a discussion on which hospital a potential pouchee should attend for the second and third operations and what to expect in terms of recovery times from operations 2 and 3. This prompted the recommendation to go to high frequency centres with experienced surgeons and support specialisms such as dieticians, pharmacists and pouch nurse specialists.   Sascha also asked about the ileo-anal anastomosis* operation (currently being championed by Swedish surgeons) and an alternative to the IPAA operation (this was one of the topics discussed by Janindra Warusavitarne in a recent RLG webcast – recording available to members on the RLG website). 

(*In short, this is a direct connection of the ileum (small intestine) to the back passage, without an intervening pouch)

Thomas, a pouchee due to FAP, asked an intriguing question about the consequences of large bowel loss on the immune system, particularly for acquired immunity (for which the large bowel is strongly implicated).  This could also have links to disrupted immune systems generally and perhaps explains the apparent correlation between UC and arthritis.  It was agreed that a presentation from an immunologist with specific knowledge of UC and the role of the bowel would be of great interest.  

Mahmood asked what was the best barrier cream for pouchees, a question which led to an avalanche of answers, including calmospetine (available from US outlets via the internet – widely recommended but expensive due to postage), Bepanthen, anusol, sudocreme, Coloplast Comfeel and finally an absorbent lined dressing called melonin, which soaks up any seepage / leakage and keeps the bum clean and dry.   It was agreed that prevention was better than cure and to wash the bum after every pooh and then apply barrier cream to the clean, dry area rather than waiting for your bum to become painful.  

Cathryn asked a superb question which sparked great discussion – the topic of psychological support for patients going through the pouch series of operations and any tips for greater resilience to cope when pouch problems are getting you down. There was widespread acknowledgement of the mental stress of going through this series of operations and the need for support to ensure mental health is looked after as well as physical health.  Interestingly, PhD student Zeina Bushnaq will be reporting on the findings of her recent survey about this very topic on 11 August – one of the series of RLG webcasts for the summer (see website for details and to register).  Many RLG members participated in the survey and Zeina was very grateful to all the volunteers, hence is happy to come back and share the outcomes with us.     

There was much discussion of how pouchees cope.  Barry commented that you just have to get on with it, as many of us have found when waking up in the night after a significant leak episode.  There were some very personal comments about counselling and others talked about the importance of a supportive family and friends with whom the pouchee can talk without fear of ridicule or dismissal.  Gary mentioned Mr Yoran Inspector, the Head of the St Marks Psychology unit and recommended previous lectures he had given to the RLG members over recent years and which are available to download from the RLG website.  There was a general feeling that talking to other pouchees and comparing pouch-related experiences in a supportive way was a tremendous opportunity, which is what these zoom forums are all about. 

David closed the meeting with a thank you to all the attendees for their questions and contributions to a lively and thoroughly enjoyable session.  

The next RLG zoom forum takes place Monday 5 July and will be preceded by a short AGM, starting at 7pm.  Chairman David urged all members to attend to ensure quorum.  

The next RLG event will be the latest in the series of RLG summer webcasts, this time with newcomer Professor Ailsa Hart talking about inflammatory bowel disease and bowel surgery.  It takes place on Monday 14 June starting at 7.30pm.  

To register for future events, click HERE to go to the EVENTS tab on our website

David closed the meeting with a thank you to all the attendees for their questions and contributions to a lively and thoroughly enjoyable session. 

Published 11 May 2021

The latest in the popular and enjoyable RLG pouch zoom forums took place on 10 May.  A wide variety of pouchees and potential pouchees dialled in for informal, supportive and entertaining discussions of all things pouch, chaired by Roar editor Christopher Browne and with RLG membership Secretary Gary Bronziet pressing all the right (computer) buttons.  

The group welcomed a new member, Carole, a very recent pouchee, experiencing challenges that will be familiar to many of us including nighttime frequency, diet-related upset and transit time: “It was refreshing, reassuring and absolutely lovely to feel that my pouch and I belonged in your supportive community.  I am so appreciative of the discussion and all the helpful advice, comments and encouragement”.  

Topics included dilatation for blockage symptoms being experienced by a pouchee of 35 years, routine blood tests advised for pouchees, adhesions, use of catheters and how to make them more comfortable (aka amazing things you can do with insulation tape).  The embarrassment of using toilets in other people’s houses, dedicated toilets at home, the use of pungent sprays to mask smells.  Gary entertained the delegates showing a poignant advert for “Poo Pourri”!  It was a pleasure to welcome back Peter Zammit, the RLG regional representative in Essex and one of the first RLG members some 27 years ago.   Finally, another newcomer, Ashley, asked what to expect after take-down (closure of stoma) and received excellent and heartfelt advice from several of the attendees. 

Sense of humour warning – Only watch video if you have a twisted sense of humour like me! (Ed.)

The next forum will take place on Monday 7 June and attendees will need to register beforehand to receive the dial in detail.  We hope to see you again on the night.    Click on Register Now below to register.

In related news, Howard Bluston extended an invitation to all to attend the IBD Information Day scheduled for Saturday October 16th.  And the IA pouch-specific subgroup held a virtual information day on Saturday 1 May, which is now available to download on the IA website.  

Finally, Christopher announced the next in the series of RLG Summer webcasts taking place next week, Wednesday 19 May featuring Professor John Nicholls talking about “Evolution of Modern surgery“.  You can register for that also by clicking on Register Now below. 

All welcome.  

David Davies

RLG Chairman 

Published 3 March 2021

Review of latest Pouch forum and register for next event on Zoom on Monday 5 April 2021

Published 3 March 2021

The latest Red Lion Group pouch support chat forum took place on Monday 1 March and was well attended with some 56 people registered and some 42 attending.  The attendees came from all over the UK;  a couple from mainland Europe and one lady dialling in all the way from New York State.  We also had another first with a mother and daughter attending the same event.  Tech expert Gary Bronziet pressed all the right buttons and session chairs Theresa Parr and Christopher Browne facilitated the discussions, which were both lively and varied.  

Topics covered by the ladies included avoiding and sorting out dehydration, the covid vaccine and pouchees; covid infections amongst pouchees, pouchitis and the use of biologics to treat pouchitis, tail pain, loperamide, pain generally and sex!  Topics covered by the men included a long discussion and presentation of catheters (medina, Bard urinary catheter and Aquaflush); doing sports with a pouch (golf, kick boxing, weight training and triathlons – not all at the same time)!  The transition from pouch back to stoma; the prevalence of pouch failure and resection; access to the St Marks pouch nurse specialists when you are not a St Marks patient;  probiotics and prostate cancer.   

As you can see a very varied set of pouch-related topics of interest to many pouchees and with practical tips and suggestions to add value.  These forums are free to attend and are informal opportunities for people to talk in an open and supportive environment.  The sessions are not recorded as the information shared is often of a sensitive nature.  So if you want to hear the discussions then please register and dial in for future forums.  

Review of latest Pouch forum and register for next event on Monday 1 March 2021

Published 2 February 2021

The latest Red Lion Group pouch support chat forum took place on Monday 1 February and was well attended with some 52 people registered for the event.  As per usual the tech whizz Gary Bronziet pressed all the right buttons and session chairs Theresa Parr (for the ladies) and Christopher Browne (for the men) facilitated the discussions, which were extremely lively and varied.  

Topics covered by the ladies included obstructions, leakage, pouchitis, irrigation, fistulas, probiotics and emotional support for pouchees along their journey.  By contrast, the mens group discussed Rifamixin for pouchitis, flushing pouches with warm water enemas, faecal transplants and the likelihood of them calming pouchitis, catheter use, strictures, probiotics, Vitamin D deficiency in pouchees, flushing out mucus from the unconnected pouch (to prevent pouchitis), increased transit time through taking movicol, wiping toilets and who does it in your house?, sharing a toilet in the home environment and dispute resolution tips, peristalsis and the causes of “gurgling”,  access to disabled toilets, radar keys and the perils of auto opening on disabled toilets!  

As you can see a very varied set of pouch-related topics and it is always interesting when the groups come together to pick out the topics of most interest for further discussion.  And there are always practical tips and suggestions which add to the value of such group chats.  I learned, for example, that Costco sell a toilet seat with a simple quick release mechanism for easy and thorough cleaning (a MUST for pouchees)!  

These forums are free to attend and are informal opportunities for people to talk in an open and supportive environment.  The sessions are not recorded as the information shared is often of a sensitive nature and we want people to feel comfortable that there will be no recording.  It was satisfying indeed to hear during the evening from people who have had pouches for many years, but who had received no patient-based support up until they became aware of the Red Lion Group forums.   

The forums run on the first Monday of every month; the next will be on Monday 1 March.  Please make a note to register beforehand if you wish to attend so we can send on the dial in details.  See you then!  

David Davies
RLG Chairman

Make your first New Year Resolution to attend RLG Pouch Forum on 4 January 2021

Re-Published on 30 December 2020

The latest in the series of RLG pouch support internet chat forums was held on Monday evening, 7th December.   Attracting some 20 attendees, the evening was the latest opportunity for pouchees to “get together” from the safety and comfort of our own homes and talk about common pouch problems and challenges and to share tips and stories.  The evening was choreographed by Gary Bronziet (Membership Secretary), with Michelle Martin (Committee member) and Christopher Browne (Editor in Chief of Roar! magazine) supporting the discussions.  Indeed, the discussions were so lively that we decided not to split into male and female groups, but to stay together as one group all evening.

The group discussed topics which had arisen on recent pouch forums and also personal questions and items tabled by the attendees on the night.  These included a fascinating expose of the dangers of apple peel in causing the gut to go into spasm.  Christopher explained the problem is the very high level of fibre in the peel, which overloads the small intestine in pouchees.  One solution is to avoid them altogether, another was to boil the skins to degrade the fibrous material and finally to chew chew chew!   This led on to a general discussion of other foods which can cause problems, including mushrooms, chocolate, tomatoes, orange pith and the gerkins in a MacDonalds burger (especially if you are using a medina catheter to empty your pouch). 

The group welcomed a newbie, with a J-pouch created as a result of FAP in February of this year.  An ultra-marathon runner before his operation, he was relatively fit and otherwise healthy at the time of his operations (unlike many of us who had UC).  So he has had a relatively smooth recovery, but is still struggling with night time bowel movements and having to get up two times each night.  Relatively common amongst pouchees, there were a number of solutions offered including stopping eating early in the day (he stops at 1600 hours each day!), use of Imodium and timing – 30 minutes before the last meal, correlating foods which cause more night time BMs and ensuring full emptying before retiring.  The benefits of the medina catheter were discussed as a means to fully empty one’s pouch before bed time in 3-5 minutes compared with sitting on the toilet for 20-256 minutes to be sure the pouch is empty. The medina offers the opportunity to flush the pouch contents through with warm water, which some pouchees find helpful.  Although another comment was that the tubing can be hard when cold, the holes can nip the anal area when being inserted and the holes can be blocked by foods which do not break down in our remaining gut (such as the MacDonalds gerkin – who knew!).  It seems the medina is a bit like marmite, you either love it or avoid it (or as one pouchee said “I’m not ready for it yet”, which resonated with me).  There is an alternative to the medina catheter called the aqua flush system which Committee member Theresa Parr was keen to champion.  More expensive than the medina but with some design improvements, it is available on prescription from your local GP.  Mind you, given the postcode lottery for prescription of VSL and biological anti-inflammatories, I think it’s safer to say that the aqua flush system might be available on prescription, but be prepared to make a firm case for it when you visit the GP.  

The frequency and need for medical check ups for pouchees was discussed.  It became apparent that many of the group did not have regular (annual) check ups and were not chased by their surgeons to attend follow ups.  By contrast, others attend every year, whether they have any problems or not.  One attendee commented that they had some dysplasia in their rectal cuff so felt that a regular check up was justified to check that the dysplasia has not developed into something more sinister.  Many pouchees rely upon the expertise and experience of pouch nurse specialists, where such staff are employed. These specialists are very much on the front line of pouch care and are able to discern very quickly if an issue needs further investigation or resolution by a consultant.  They can also offer simple tips or reassurance if indeed the problem is not so urgent.  Many centres in the UK do not have pouch nurse specialists; in which case the nurse specialist is usually a stoma nurse.  However, this is not ideal.  

Other topics included the safe limits for lifting weights generally and specifically in relation to exercising in the gym.  Theresa Parr, a retired NHS physiotherapist was able to provide informed comment that the weight is not so important as the way in which you lift the item.  Safe practices such as keeping the back straight and not stretching out when lifting were more important in terms of keeping healthy than the weight per se. 

Zeina Bushnaq provided a very positive update on her PhD survey of pouchees, ileostomists and potential pouchees to identify opportunities for greater emotional and psychological support.  Thanks to the help of the Red Lion Group, Zeina now has 84 completed surveys from pouchees, which is a fantastic total.  She thanked everyone who had taken the time to complete The survey.  

David Davies, RLG Chairman, announced that he was in discussions with a company wanting to run a clinical trial of a new biologic drug to treat recurrent pouchitis.  He will be speaking with them later this week and will hope to be advertising the trial on the RLG website and with emails to members and through social media outlets once the trial was up and running. 

Finally, David raised a glass to wish everyone a healthy and happy Christmas and a Happy New Year, in spite of the continuing covid restrictions.  

The next online pouch forum chat night will be Monday 4 January 2021 starting at 8pm.  Please click “Register Now” link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies
RLG Chairman

Re–Published on 01 December 2020

Register now for next Pouch Open Forum on 7 December 2020

The latest in the series of Red Lion Group Pouch Support chat forums via the wonders of zoom technology was held on Monday evening, 2 nd November.   Attracting some 30 attendees, the evening was another riveting and thoroughly enjoyable opportunity for pouchees and potential pouchees to talk about common problems and challenges and for the more experienced pouchees to share their tips and recommendations to help the less experienced pouchees.   The evening was choreographed by Gary Bronziet, our very own IT guru (and Membership Secretary), with Theresa Parr (Minutes Secretary) and Christopher Browne (Editor in Chief of the excellent Roar! publication) chairing the female and male breakout groups respectively.  

The small but perfectly formed male group enjoyed an excellent discussion, including a variety of topics such as cuffitis, the diagnosis of crohns versus ulcerative colitis, prostate gland examinations, symptoms of blockage and the influence of adhesions in causing blockages to be more likely to occur, the foods that cause blockages and cures.  We welcomed a new pouchee of only 6 weeks, who was keen to hear personal stories and frustrations to reassure themselves that they were doing OK (indeed he is doing very well). The ladies group included two RLG members who were the 8th and 9thpeople respectively in the UK to have their pouches created by Sir Alan Parks at St Marks some 43 years ago!! A very warm welcome was extended as you can imagine.  

The ladies session covered topics suggested by the attendees, including loperamide usage, diet, skin care, mental health issues, lifting and exercise and blockages.  Regarding lifting, one of the attendees, Linda, provided the following information after the event: 

Professor Bo Shen recommended in his book “Pouchitis and ileal pouch disorders” that pouchees “…should not lift more than 20-25lbs as well as avoiding any postures during exercise that may assert pressure or torsion at certain sites such as tip of the pouch, the anastomosis site and previous stoma site.”

On the topic of mental health, Linda also commented that her local hospital ran a six-week (one night each week) course on chronic stress management, which was found to be beneficial.  Another potential topic for the next forum.  

In summing up, Christopher Browne appealed for more personal stories of mental health in pouchees – an opportunity to share your own story (anonymously or not, as you wish) in an article Christopher is writing for the next edition of Roar!  If you have a story to tell and would like to submit, then please send to Christopher at cbrowne@brownmedia.co.uk. 

Finally, David Davies (RLG Chairman) extended thanks from a PhD student, Zeina Bushnaq, who is conducting a survey of mental health and psychological support for pouchees during their surgical journey.  Thanks to a mention during a previous forum and other posts on social media she has managed to recruit 74 pouchees for the survey, an excellent response for which she is very grateful.   Thank you to all who took part.  We will hope to publish the outcomes in due course on the RLG website. 

These RLG monthly chat forums are very well appreciated by all attendees and have been a noteable highlight amidst the general covid gloom.  In particular, for pouchees who are based in more remote regions and for whom there isn’t ready access to other pouchees. Hopefully these sessions are helping those people to feel less isolated. 

The next Red Lion Group zoom chat will take place on Monday 7 December starting at 8pm.  Please click Register Now link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies


RLG Chairman

Re–Published on 25 October 2020

Registration is now open for our next Open Zoom Forum on Monday 2 November at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after recent meeting –

“Thank you – I did enjoy the session.  I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 2 November at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 2 November 2020).

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 August 2020 – David Davies Chairman Red Lion Group

The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm.  Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues.  One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.  

Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:

  • How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
    • Use of a catheter to achieve complete emptying before bed
    • Medications and their use to prevent/reduce nightime BMs.  Windeeze was one suggestion to reduce gas in the pouch
    • Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time. 
  • Diet and the best diets to use to achieve weight loss along with a healthy pouch 
    • The benefits of the MacDonalds diet for pouchees! 
  • The St Marks pouch nurses and how to contact them
  • Probiotics and the high cost of VSL#3.  Many people use probiotics and feel they help keep their pouches healthy.  Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community.  However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website. 
  • It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!

Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons.  And thank you to all who took time out to join the event and contribute to the lively discussions.  

You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 7 September 2020).

Published on 5 July 2020.

First Red Lion Group Zoom Forum “a great success”!

The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions.  So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past.  The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members.  The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics.  The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.

Representative screen image of Zoom meeting

The event was a resounding success.  Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.

Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.  

We pouchees are united by a common journey and shared experiences which are unique to our circumstance.  There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs.  The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.  

The event was a great success with attendees unanimously voting for another such event in one month time.  The next forum will take place during the evening of Monday 3rd August, starting at 8pm.  To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.

Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event. 

David Davies


Chairman – Red Lion Group

We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.

Events

Make your first New Year Resolution to attend RLG…

Make your first New Year Resolution to attend RLG Pouch Forum on 4 January 2021

Re-Published on 30 December 2020

The latest in the series of RLG pouch support internet chat forums was held on Monday evening, 7th December.   Attracting some 20 attendees, the evening was the latest opportunity for pouchees to “get together” from the safety and comfort of our own homes and talk about common pouch problems and challenges and to share tips and stories.  The evening was choreographed by Gary Bronziet (Membership Secretary), with Michelle Martin (Committee member) and Christopher Browne (Editor in Chief of Roar! magazine) supporting the discussions.  Indeed, the discussions were so lively that we decided not to split into male and female groups, but to stay together as one group all evening.

The group discussed topics which had arisen on recent pouch forums and also personal questions and items tabled by the attendees on the night.  These included a fascinating expose of the dangers of apple peel in causing the gut to go into spasm.  Christopher explained the problem is the very high level of fibre in the peel, which overloads the small intestine in pouchees.  One solution is to avoid them altogether, another was to boil the skins to degrade the fibrous material and finally to chew chew chew!   This led on to a general discussion of other foods which can cause problems, including mushrooms, chocolate, tomatoes, orange pith and the gerkins in a MacDonalds burger (especially if you are using a medina catheter to empty your pouch). 

The group welcomed a newbie, with a J-pouch created as a result of FAP in February of this year.  An ultra-marathon runner before his operation, he was relatively fit and otherwise healthy at the time of his operations (unlike many of us who had UC).  So he has had a relatively smooth recovery, but is still struggling with night time bowel movements and having to get up two times each night.  Relatively common amongst pouchees, there were a number of solutions offered including stopping eating early in the day (he stops at 1600 hours each day!), use of Imodium and timing – 30 minutes before the last meal, correlating foods which cause more night time BMs and ensuring full emptying before retiring.  The benefits of the medina catheter were discussed as a means to fully empty one’s pouch before bed time in 3-5 minutes compared with sitting on the toilet for 20-256 minutes to be sure the pouch is empty. The medina offers the opportunity to flush the pouch contents through with warm water, which some pouchees find helpful.  Although another comment was that the tubing can be hard when cold, the holes can nip the anal area when being inserted and the holes can be blocked by foods which do not break down in our remaining gut (such as the MacDonalds gerkin – who knew!).  It seems the medina is a bit like marmite, you either love it or avoid it (or as one pouchee said “I’m not ready for it yet”, which resonated with me).  There is an alternative to the medina catheter called the aqua flush system which Committee member Theresa Parr was keen to champion.  More expensive than the medina but with some design improvements, it is available on prescription from your local GP.  Mind you, given the postcode lottery for prescription of VSL and biological anti-inflammatories, I think it’s safer to say that the aqua flush system might be available on prescription, but be prepared to make a firm case for it when you visit the GP.  

The frequency and need for medical check ups for pouchees was discussed.  It became apparent that many of the group did not have regular (annual) check ups and were not chased by their surgeons to attend follow ups.  By contrast, others attend every year, whether they have any problems or not.  One attendee commented that they had some dysplasia in their rectal cuff so felt that a regular check up was justified to check that the dysplasia has not developed into something more sinister.  Many pouchees rely upon the expertise and experience of pouch nurse specialists, where such staff are employed. These specialists are very much on the front line of pouch care and are able to discern very quickly if an issue needs further investigation or resolution by a consultant.  They can also offer simple tips or reassurance if indeed the problem is not so urgent.  Many centres in the UK do not have pouch nurse specialists; in which case the nurse specialist is usually a stoma nurse.  However, this is not ideal.  

Other topics included the safe limits for lifting weights generally and specifically in relation to exercising in the gym.  Theresa Parr, a retired NHS physiotherapist was able to provide informed comment that the weight is not so important as the way in which you lift the item.  Safe practices such as keeping the back straight and not stretching out when lifting were more important in terms of keeping healthy than the weight per se. 

Zeina Bushnaq provided a very positive update on her PhD survey of pouchees, ileostomists and potential pouchees to identify opportunities for greater emotional and psychological support.  Thanks to the help of the Red Lion Group, Zeina now has 84 completed surveys from pouchees, which is a fantastic total.  She thanked everyone who had taken the time to complete The survey.  

David Davies, RLG Chairman, announced that he was in discussions with a company wanting to run a clinical trial of a new biologic drug to treat recurrent pouchitis.  He will be speaking with them later this week and will hope to be advertising the trial on the RLG website and with emails to members and through social media outlets once the trial was up and running. 

Finally, David raised a glass to wish everyone a healthy and happy Christmas and a Happy New Year, in spite of the continuing covid restrictions.  

The next online pouch forum chat night will be Monday 4 January 2021 starting at 8pm.  Please click “Register Now” link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies
RLG Chairman

Register Now

Re–Published on 01 December 2020

Register now for next Pouch Open Forum on 7 December 2020

The latest in the series of Red Lion Group Pouch Support chat forums via the wonders of zoom technology was held on Monday evening, 2 nd November.   Attracting some 30 attendees, the evening was another riveting and thoroughly enjoyable opportunity for pouchees and potential pouchees to talk about common problems and challenges and for the more experienced pouchees to share their tips and recommendations to help the less experienced pouchees.   The evening was choreographed by Gary Bronziet, our very own IT guru (and Membership Secretary), with Theresa Parr (Minutes Secretary) and Christopher Browne (Editor in Chief of the excellent Roar! publication) chairing the female and male breakout groups respectively.  

The small but perfectly formed male group enjoyed an excellent discussion, including a variety of topics such as cuffitis, the diagnosis of crohns versus ulcerative colitis, prostate gland examinations, symptoms of blockage and the influence of adhesions in causing blockages to be more likely to occur, the foods that cause blockages and cures.  We welcomed a new pouchee of only 6 weeks, who was keen to hear personal stories and frustrations to reassure themselves that they were doing OK (indeed he is doing very well). The ladies group included two RLG members who were the 8th and 9thpeople respectively in the UK to have their pouches created by Sir Alan Parks at St Marks some 43 years ago!! A very warm welcome was extended as you can imagine.  

The ladies session covered topics suggested by the attendees, including loperamide usage, diet, skin care, mental health issues, lifting and exercise and blockages.  Regarding lifting, one of the attendees, Linda, provided the following information after the event: 

Professor Bo Shen recommended in his book “Pouchitis and ileal pouch disorders” that pouchees “…should not lift more than 20-25lbs as well as avoiding any postures during exercise that may assert pressure or torsion at certain sites such as tip of the pouch, the anastomosis site and previous stoma site.”

On the topic of mental health, Linda also commented that her local hospital ran a six-week (one night each week) course on chronic stress management, which was found to be beneficial.  Another potential topic for the next forum.  

In summing up, Christopher Browne appealed for more personal stories of mental health in pouchees – an opportunity to share your own story (anonymously or not, as you wish) in an article Christopher is writing for the next edition of Roar!  If you have a story to tell and would like to submit, then please send to Christopher at cbrowne@brownmedia.co.uk. 

Finally, David Davies (RLG Chairman) extended thanks from a PhD student, Zeina Bushnaq, who is conducting a survey of mental health and psychological support for pouchees during their surgical journey.  Thanks to a mention during a previous forum and other posts on social media she has managed to recruit 74 pouchees for the survey, an excellent response for which she is very grateful.   Thank you to all who took part.  We will hope to publish the outcomes in due course on the RLG website. 

These RLG monthly chat forums are very well appreciated by all attendees and have been a noteable highlight amidst the general covid gloom.  In particular, for pouchees who are based in more remote regions and for whom there isn’t ready access to other pouchees. Hopefully these sessions are helping those people to feel less isolated. 

The next Red Lion Group zoom chat will take place on Monday 7 December starting at 8pm.  Please click Register Now link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.  

David Davies


RLG Chairman

Register Now

Re–Published on 25 October 2020

Registration is now open for our next Open Zoom Forum on Monday 2 November at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after recent meeting –

“Thank you – I did enjoy the session.  I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 2 November at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 2 November 2020).

Register Now

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 August 2020 – David Davies Chairman Red Lion Group

The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm.  Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues.  One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.  

Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:

  • How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
    • Use of a catheter to achieve complete emptying before bed
    • Medications and their use to prevent/reduce nightime BMs.  Windeeze was one suggestion to reduce gas in the pouch
    • Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time. 
  • Diet and the best diets to use to achieve weight loss along with a healthy pouch 
    • The benefits of the MacDonalds diet for pouchees! 
  • The St Marks pouch nurses and how to contact them
  • Probiotics and the high cost of VSL#3.  Many people use probiotics and feel they help keep their pouches healthy.  Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community.  However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website. 
  • It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!

Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons.  And thank you to all who took time out to join the event and contribute to the lively discussions.  

You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 7 September 2020).

Register Now

Published on 5 July 2020.

First Red Lion Group Zoom Forum “a great success”!

The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions.  So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past.  The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members.  The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics.  The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.

Representative screen image of Zoom meeting

The event was a resounding success.  Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.

Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.  

We pouchees are united by a common journey and shared experiences which are unique to our circumstance.  There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs.  The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.  

The event was a great success with attendees unanimously voting for another such event in one month time.  The next forum will take place during the evening of Monday 3rd August, starting at 8pm.  To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.

Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event. 

David Davies


Chairman – Red Lion Group

Register Now

We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.

News

It’s all in the mind…

Just how fit are you? When did you last do a few pre-breakfast press-ups? Or a couple of bracing laps of the local park perhaps? Last week, last year – or never perhaps.

And how often do you think about your mental fitness? It may not be so obvious, but however strong, skilful, athletic or flexible you are, it’s your calmness and determination that guide you and help you to perform your daily activities ie it’s all in the mind!

Mental health is such a vital and fascinating subject, that we will be investigating it further in the December Roar! with contributions from two leading psychiatrists, case studies from doctors, surgeons, healthcare professionals and, of course, other pouch-owners.

Would you like to add your own experiences of mental health to this article? You can do this by sending your own examples, ideas and views in confidence – and anonymously if you prefer – to Christopher Browne, Roar! Editor, at cbrowne@brownemedia.co.uk.

It’s quite a heady subject after all!

Events

Zoom into Summer series of Pouch webcasts

Updated Sunday 21 June 2020

Professor John Nicholls discussing the history and evolution of the Internal Pouch procedure.

This week’s Red Lion Group Zoom meeting featured the eminent surgeon, Professor John Nicholls, who spoke about the history and evolution of the different surgical procedures for the treatment of bowel diseases, including the pouch procedure of which he was, with Sir Alan Parks, the first surgeon to describe and carry out the procedure. This was a fascinating talk, especially as so many attending the talk have Professor Nicholls to thank for their own pouch! You can view the recording of the talk by clicking on the picture above.

This was the last session in the Zoom into Summer schedule to feature a guest speaker, however as mentioned at the meeting by Red Lion Group chairman, David Davies, we intend to hold further Zoom meetings in the format of an informal “coffee morning” chat, like the open forums we usually hold at the end of our annual Information Days. The first one is provisionally scheduled for Thursday 2 July at 10:30 am. Further details to follow!

Thanks to everyone that has supported our Zoom events and sent such positive feedback, and special thanks to all of our speakers. We have had over 100 people that have taken part, and look forward to seeing you on our first coffee morning meeting!

Updated Sunday 14 June 2020

Zoom into Summer with Zarah Perry-Woodford – Living with a Pouch

This week 48 of us had the pleasure of listening to Zarah Perry-Woodford, followed by a vibrant question and answer session covering a variety of Pouch related issues. If you missed the session, you can see a replay by clicking on the picture of Zarah above.

Next Thursday you will have the opportunity of hearing from Prof. John Nicholls who, with Sir Alan Parks more than 40 years ago, pioneered the procedure we know now as the Internal Pouch or IPAA. We look forward to hearing his personal reflection on 40 years of the pouch procedure on Thursday 18 June at 10:30 am.

Please don’t forget to register to receive the Zoom meeting Link. You can register by tapping the button below. Note that this zoom meeting will be immediately followed by the AGM (Annual General Meeting) of the Red Lion Group, and Red Lion Group members are invited/encouraged to remain on the Zoom for the AGM. We promise it will be short and sweet and further information about the AGM will be sent out seperately to members.

Note the main presentation from Prof. Nicholls is open to all, not just RLG members!

Register Now

Updated Tuesday 9 June 2020

Links to the recordings from the first three Zoom into Summer sessions are now available. Click on the pictures below to view the recordings of Dr. Yoram Inspector, Janindra Warusavitarne and Jason Bacon respectively.

Don’t forget to register for this week’s Zoom featuring Zarah Perry-Woodford if you have not already done so!

Updated Sunday 7 June 2020

Dr. Yoram Inspector – the link between the Brain and the Gut

Another “lockdown ” week gone by, and another fascinating Red Lion Group Zoom meeting, this week featuring Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Yoram shared his unique perspective on the link between the brain and the gut, with a good measure of Greek Classics and Mythology thrown in! Make sure to look out for the recording if you missed it.

It’s not too late to register for the Zoom meeting this coming Thursday 11 June (10:30 – 11:30) where this weeks guest speaker will be Zarah Perry-Woodford.  Zarah has a CV that reads like a medical Who’s Who. A pioneer in patient care and support, Zarah is the Consultant Nurse at St Mark’s Hospital, the UK’s centre of excellence for pouch and stoma care. Zarah speaks and presents at national and international conferences, writes for the leading medical and nursing journals and in 2016 wrote the definitive “Ileo-Anal Pouch Surgery for Ulcerative Colitis – a Guide for Patients” – a work that has become the go-to bible for those who have had or are about to have pouch surgery. She was also a very active medical liaison officer with the Red Lion Group.

After spending several years developing and expanding the ileo-anal pouch service at St Mark’s Hospital, Zarah is now a key member of the team working on the NHS-sponsored “Ostomate Project”, which aims to expand and develop stomacare services and products throughout the UK.

You must register to receive the Zoom meeting Invitation.

Register Now

Scroll down for further information about upcoming meetings.

Updated Sunday 31 May 2020

Janindra Warusavitarne – Innovation in Pouch Surgery

Thursday we had another enjoyable and enlightening Zoom meeting with over 40 attendees, watching and listening to Janindra Warusavitarne. His talk was followed by a lively Q&A session. Janindra was also complimented on having the best book shelf seen on Zoom so far!

If you attended you will also have heard about the further exciting speakers lined up for future sessions. On Thursday June 11, we have the pleasure of hearing from Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital. Many of you will know Zarah from personal experience, and as you will know, Zarah literally wrote the book on “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“. You can see further details about Zarah and her book in a previous post here.

Hot off the press news is that our speaker on Thursday 18 June will be none other than Professor John Nicholls. As many of you will know, Prof. Nicholls (with Sir Alan Parks) pioneered the surgical procedure we know as the Internal Pouch or IPAA. (see recent post on their historical paper describing the procedure here ).

And don’t forget to register to attend this weeks ZOOM (Thursday 4 June) where the speaker will be Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology. His last talk at a Red Lion Group Information day, was rated the most popular by attendees with his fascinating insights into the link between the brain and the gut.

For further information, and to register please scroll down.

Updated Saturday 23 May 2020

Jason Bacon – CEO of St. Mark’s Hospital Foundation

This past Thursday, we held the first of our series of Zoom into Summer webinars and a good time was had by all. Jason Bacon, CEO of St. Mark’s Hospital Foundation gave a very interesting talk on how St. Mark’s Hospital has adapted in the light of the COVID-19 virus. A recording of the talk will soon be available on line.

Further to last weeks update, I can now confirm that the talk by Dr. Yoram Inspector will be on Thursday, 4 June (10:30 – 11:30). Anyone that has attended one of his talks will know that he is one of our most popular Information Day presenters. Dr. Inspector is a Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology.

It’s not too late to register for the Zoom meeting this coming Thursday 28 May (10:30 – 11:30) where this weeks guest speaker will be Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital. Janindra has a particular interest in minimally invasive surgical techniques and is at the forefront of developments in Pouch Surgery.

Details of how to register are below. So come on fellow pouchees and guests! Bring your morning cuppa, and join us for elevenses with an interesting talk with time for Q&A and discussion.

We are delighted to announce that we will be hosting a series of Pouch related webinars (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike. As you may know, regrettably we had to postpone the RLG annual Information Day usually held at St. Mark’s Hospital, but here is a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

The following online meetings are currently scheduled (more to follow) :-

Jason Bacon

Thursday 21 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Jason Bacon (CEO of St. Mark’s Hospital Foundation)

Janindra Warusavitarne

Thursday 28 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Dr. Yoram Inspector

Thursday 4 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital.

Zarah Perry-Woodford

Thursday 11 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital

Prof. Nicholls receiving gift from Chairman David Davies after speaking at Information Day 2017

Thursday 18 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Prof. John Nicholls – The Rear Admiral (retired)

If you would like to attend any session, please register your name and email address by clicking the button below. Please indicate the session(s) you would like to attend. You will be sent joining instructions in due course.

Register Now

Zoom is FREE and extremely easy to use, and you can join with the press of a button from a desktop computer, laptop, tablet or smart phone. There are no costs to you in joining the webinar.

We look forward to hearing from you soon and receiving your registrations!

News

Coronavirus Update

Coronavirus Update

Many of you have been contacting us over the past few weeks about the coronavirus outbreak expressing understandable concerns about its effects on your health, work, finances and general well-being. 

It has also meant we have had to postpone the Red Lion Group’s Annual Information Day and AGM, which was due to take place on 25 April, in compliance with government restrictions.  We recognize the value of the Information Day to our members and are constantly reviewing the possibilities of a re-arranged event later in the year. We will keep you posted on this.

Covid-19 has posed many questions and concerns for us all about both the present and the future. In particular the “at risk” status of pouchees and potential pouchees who are on various medications.  

There is very clear and concise advice on this topic on the websites of the Ileostomy and Internal Pouch Association (IA) ( Click here ) and Crohn’s and Colitis UK ( Click here ) and we suggest you refer to these in the first instance

If you still have issues or concerns then please don’t hesitate to contact us at info@pouchsupport.org.

The RLG Committee

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