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News

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

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

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

Names have been anonymised for publication on our website.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Christopher Browne
ROAR! Editor

Member Feedback

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

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


ROAR – Issue 53: Summer 2017
ROAR – Issue 53: Summer 2017
Download Now!2234 Downloads

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


Events

Our next webcast – Dietary and medication Q&A for…

Our next webcast – “Dietary and medication Q&A for J pouch patients“” – featuring Uchu Meade and Gabriela Poufou

Updated 2nd December 2024

The promised follow-up session to this Q&A will now be taking place in 2025. We will let you know as soon as we have a confirmed date or keep an eye on our events calendar at pouchsupport.org/events/

Updated 29th July 2024

This webcast took place as advertised on 24th July and was greatly enjoyed by the attendees. The recording of this session is now available. Many subjects of great interest to pouchees were discussed in detail as shown below.

TIMESUBJECT
0.00:00Introduction
0.03:23Vitamin B12 Deficiency
0.33:24 Passing undigested food
0.36:33Psyllium Husk
0.42:52 Gas/bloating
0.56:46  Hydration/St. Mark’s eMix
1.13:34 Monitoring Sodium levels
1.15:10Taking vitamin Supplements
1.22:49Strictures/ Blockages (to be continued…)
Video timings

In fact, we ran out of time to cover all the questions that had been submitted, and we are delighted to announce that Uchu and Gabriela have volunteered to participate in another session to cover the remaining questions (and any new ones that might be added!)

We will let you know the date as soon as possible. In the meantime, enjoy the recording of Part 1, which you can find on our Youtube channel here.

After watching this recording, it would be much appreciated if you could submit your feedback at https://forms.office.com/e/a4A1nVT44V.  Survey results will support Uchu and Gabriela’s personal professional development and interaction with patient groups such as pouchees is a very important part of their professional  evaluation.


Our next webcast will be taking place on Wednesday 24th July at 7:30 pm (BST) and will feature Uchu Meade, Consultant Pharmacist, and Gabriela Poufou, Advanced Specialist Inflammatory Bowel Disease Dietitian – both at St. Mark’s Hospital.

Both have previously presented at Red Lion Group Information days and zoom webcasts and you can find recordings on our YouTube channel (see below). For the first time, we will be featuring the two of them together and the format of the whole session will be in the form of an interactive Question & Answer, on two of the most interesting subjects for people with an internal pouch (J Pouch or similar) and that is on the topics of DIETARY and MEDICATION advice for J pouch patients.

In April 2023, Uchu Meade achieved a significant milestone in her career by becoming the first consultant level pharmacist at St Mark’s Hospital. She has presented for RLG previously on the subject “Pharmacy advice for Pouch Patients“. You can find view the recording here.

Also taking part will be Gabriela Poufou. Gabriela is an Advanced Specialist Inflammatory Bowel Disease Dietitian at St. Mark’s. Her webcast “Healthy eating for Patients with a J Pouch” is one of the most viewed recordings on our YouTube channel. You can see it here.

You will be able to put your questions during the session but we would like to encourage you to submit questions in advance. Please submit questions to info@pouchsupport.org so that we can make sure the most popular questions/challenges are addressed.

(The session will be recorded and published on our YouTube channel – but privacy of participants will be maintained).

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 recent webcast featuring Uchu Meade and Gabriela Poufou on the subject “Pharmacy and Dietary advice – Q&A” on our YouTube channel here


You can view the recording of the recent webcast featuring Janindra Warusavitarne and Ben Barbanel on the subject “Surgeon/Patient – a special relationship” on our YouTube channel here

Events

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

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

By Christopher Browne – Roar! Editor

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

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

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

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

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

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

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

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

See Pictures from event below.

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

Speakers in details :-

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

Related posts

  • RLG donates £5,000 towards pouch-related research
    Date
    November 16, 2021
  • St. Mark’s hospital clinical services at Northwick Park, Central Middlesex and beyond
    Date
    June 29, 2021
  • IBD Patient Day (Celebrating World IBD Day) at St. Mark’s
    Date
    April 15, 2023
News

From the archives -How pregnancy and childbirth affected my…

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


ROAR – Issue 3: Summer 1996
ROAR – Issue 3: Summer 1996
Download Now!1013 Downloads


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

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

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


News

AGM 2024 Report

AGM 2024 Report

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

AGM 2024 minutes
AGM 2024 minutes
Download Now!390 Downloads

AGM Report 2024
AGM Report 2024

Chairmans AGM Report 2024

Download Now!554 Downloads

Proposed CIO Constitution 2024
Proposed CIO Constitution 2024
Download Now!537 Downloads

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

David Davies
RLG Chair

Events

Our next webcast – featuring Janindra Warusavitarne and Ben…

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

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

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

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

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

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

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 Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Events

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

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

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

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

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 Ellie Bradshaw on the subject “Biofeedback management of Pouches” on our Youtube channel here

Events

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

Ellie Bradshaw talks “Biofeedback” in our next webcast

Updated 30 May 2024

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

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

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

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

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

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

David Davies
RLG Chairman

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


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

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

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.


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