j-pouch Archives - J Pouch support charity

You may qualify for financial support from the Kingston…

You may qualify for financial support from the Kingston Trust

If you have a stoma or an ileo-anal pouch, are over sixteen years of age and are experiencing financial hardship – you may qualify for a grant from the Kinsgton Trust.

Available to residents of England, Wales, Scotland, Northern Ireland or Republic of Ireland.

For further details visit the Kingston trust website here. Or contact the Kingston trust secretary by email secretary@kingstontrust.org.uk or phone 01256 353320.

Download an information poster below.

Kingston Trust Poster

Download Now!259 Downloads

News

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

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

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

How long do pouches last?

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

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

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

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

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

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

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

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

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

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

David Davies
Chair – Red Lion Group

You can download the full paper below.

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

Download Now!

News

Celebrating membership milestone for J Pouch support facebook group

Celebrating membership milestone for J Pouch support Facebook group

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

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

About the J Pouch Support (UK Specific) Facebook Group

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

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

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

Demographics and activity

There are twice as many women than men in the membership and the demographics show that two thirds of members are aged between 35 and 54. In the last 60 days, at time of writing, there had been more than 2 posts per day with 1,565 posts from 1,171 active members. This gives a phenomenal activity level of over 70%, reflecting the very high engagement amongst this close-knit group. The most popular days for posts are Tuesdays and Thursdays and the most popular times are 8am on Monday, Tuesday, Friday and Sunday and 7.30pm on Wednesday, Thursday and Saturday. Any correlation to the Coronation Street schedules is (probably) mere chance, but you never know!

The J Pouch

Pouch surgery involves the surgical re-plumbing of our bowels following life-saving surgery and which avoids the need for a permanent stoma and allows us to pooh via the bottom in the normal way. The outcomes of surgery are variable and hence the appeal of advice, guidance and support for pouchees and potential pouchees, particularly for members who live in the more remote areas where they might never have met another pouchee and where the medical professionals might not know much about pouches, let alone have the detailed experience and knowledge required to resolve common pouch issues. The group is hugely supportive and kind and very well informed from their own personal experiences. Every new member receives a personal welcome message which is tailored to their personal pouch circumstance.

In recent years Gary Bronziet has added an option to view the Facebook Group activity directly from the Red Lion Group website. See pouchsupport.org/forum. However, to post to the group, or respond to posts, it is necessary to submit a join request to the group. (It is not necessary to be a member of the Red Lion Group to join the Facebook Group (and vice versa!).

We look forward to many more years of growth and to many more years of pouchee support and advice via this very special group.

Welcome to Amanda and here’s to the next 1,500 members!

Best wishes

David Davies
Gary Bronziet
Sam Wainwright

Facebook

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

Stories

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.

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

Download Now!1883 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.

News

Diagnosis and treatment of pouchitis

Overview

This article describes the process for the diagnosis and treatment of pouchitis as recommended by St. Mark’s hospital, London – the UK National bowel hospital.

Symptoms

A small percentage of people with a j pouch will at some stage experience pouchitis. [The incidence of pouchitis is 20% at one year and up to 40% at 5 years. 10 to 15% of patients with pouchitis experience chronic pouchitis, which is classified as either ’treatment responsive’ or ’treatment refractory’. ¹]

Symptoms of pouchitis are not dissimilar to those experienced by patients whose original diagnosis was ulcerative colitis (UC). For example, abdominal pain, cramping, increased frequency, urgency and bleeding.

Diagnosis

Initial diagnosis is based on advanced history taking and assessment of symptoms. This is why it is important that patients speak to someone experienced in pouches, as otherwise they risk being misdiagnosed. Blood tests and pouchoscopy may be considered subject to the history taking and assessment findings.

Treatment

In most cases pouchitis responds well to antibiotics. [two weeks Ciprofloxacin and metronidazole are the most commonly used, often generating a rapid dramatic response. ¹] This may be followed up with further four weeks of antibiotics if not resolved or rapid relapse.

In the event that symptoms are not responsive to the antibiotics, investigations into alternative possible diagnosis would be carried out.

For the complete treatment algorithm, including the treatment of chronic pouchitis, refer to the St. Mark’s hospital Suggested Treatment Algorithm below.

*With acknowledgement to Jonathan P Segal, Nik S Ding, Guy Worley, Omar D Faiz, Susan K Clark, Ailsa L Hart*

You can download a copy of the treatment algorithm below :-

Protocol for the treatment of pouchitis

Tap to Download1292 Downloads

References:

¹ From the paper “Systematic review: management of chronic refractory pouchitis with evidenced based treatment algorithm” published on Research gate.

You can read the actual paper on Research gate by clicking here or the image below.

Events

Attend our regular monthly J-pouch forum on zoom

A quote from a first time attendee “…Thank you – I did enjoy the session.
I’d forgotten that in certain circles I am perfectly normal!“.

Updated 16 November 2023

The latest of the RLG zoom pouch forums took place on Monday 6th November. These popular and informal get togethers have been taking place since July 2020 and attract a regular crowd plus some returnees and a few new people. There is no agenda or script; the topics are decided on the night depending on whatever people want to discuss. The ambience is welcoming, relaxed and supportive and acknowledges the fact that pouchees are rare, we have been through a lot, and we share a common bond.

The November forum considered pouch-related issues as diverse as :-

frequency of pouchoscopy
treatments for pouchitis
what to say to medical professionals who are not familiar with the pouch
the benefits of the newer “biologics” medicines
natural cures for pouchitis.

There was an amusing explanation of “pebble dashing” for our American friends who are regular attendees (they understood immediately) and a regular slot from a gentleman who had his final take down operation some three months ago and is keeping us updated on his challenges as his body adapts to its new plumbing.

Finally, and perhaps most gratifying, there were two people considering pouches and who asked whether we would choose a pouch if we had our time again – which led to some excellent reflections on quality of life with a pouch.

These meetings are friendly and supportive and make for a relaxed hour or so with other pouchees to discuss serious and not so serious pouch-related topics – all from the comfort of your own home.

The next meeting is on Monday 4 December at 7:30 pm and pre-registration is essential (see link below) to receive the dial in detail. Hope to see you then!

“This being the last RLG zoom of the year, and being the festive season too, the attendees are encouraged to wear their xmas hats and jumpers etc. and have a suitable beverage on hand for a festive toast!”

See pouchsupport.org/events/ for details of all events or click image below to register.

David Davies
RLG Chairman

Updated 7 December 2022

The last RLG pouch forum of 2022 took place on Monday 5 December with approximately 20 pouchees dialling in for an enthralling zoom session. These informal chat events have become a regular in people’s diaries and it was good to see so many familiar faces and a few new faces too. The discussions were wide-ranging and focussed on real pouch problems and their resolution. The topics included:

Vitamin B12 deficiency and a GP letter to get testing and treatment for pouchees
Access to the St Marks pouch nurse specialists for pouch-related advice
Symptoms and treatment for blockage
When you should go to hospital with a blockage
Prevention / reduction of gas
Food supplements and whether they work or not?
Probiotics for treatment of pouchitis?
Use of catheters and/ or warm water flushing for complete pouch emptying
How to reduce or stop having to get up in the night for a pooh
Foods to avoid for Christmas dinner!

There were lots of solutions, including one pouchee who had turned around a problematic pouch with a strict regime of pouch care, including a warm water enema to (further) liquidise the pouch contents in the morning and at night, using a medina catheter to fully empty, 2 sachets of Vivomixx per day (other probiotics are available) and green tea supplements (for their apparent anti-inflammatory properties). Not only is his pouch now healthy, but his doctor complimented him on having the healthiest looking pouch he had ever seen!!

Time ran out for the last topic of the day, which was how to avoid night time leakage and seepage, so we will discuss this at the next RLG zoom forum, which will take place on Monday 9 January 2023. Attendance is free, but please remember to register beforehand at pouchsupport.org/events to receive the link to join.

Wishing you all a Happy Christmas and a healthy and prosperous New Year, looking forward to meeting again on the 9th January.

David Davies
RLG Chairman

Our regular monthly pouch forums take place on the first Monday of every month at 7:30 pm (London time) on Zoom. Meet online with other pouchees for friendly pouch related chat!

If you have a pouch or are considering pouch surgery, and have not attended one of our regular pouch forums, then you are missing a fantastic opportunity to “meet” with other like minded individuals, to discuss and compare pouch related experiences and challenges.

We welcome regular and new attendees, ranging from people with “new” pouches, “old” pouches and “yet-to-be” pouches. (Two of our regular attendees have pouches over 40 years old, and were number 9 and 10 of the first pouches ever created!). We have attendees from all over the UK and some from further afield, including Europe and North America.

Subjects discussed are varied, including diet, medication, leakage, butt-burn, frequency, travel, catheters, recommended blood tests, dehydration…the list is endless. All those delicate subjects that you may not wish to discuss elsewhere,

The reality is that we are still a rare breed, and a common reaction from first time attendees is that they have never previously met or had the opportunity to talk to someone else with a pouch. A quote from one attendee “Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“.

So don’t be shy! Go to pouchsupport.org/events to register for the next scheduled pouch forum.

News

New FAQs page on website and more speed!

Visit our new FAQs page for answers to some of the most commonly asked questions from people with, or considering J Pouch surgery.

You can find the link to it on the menu bar at the top of the screen on a PC, or in the drop down menu on a phone. See image below.

On a smart phone, click on the horizonal lines at the top right corner to see the menu bar.

You can also find it at this URL: pouchsupport.org/faqs/

In other website news, we have upgraded the service with our internet service provider, and hopefully you should be experiencing this in much improved response time.

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.”

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].

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?

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 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.

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.

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, 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 pouchsupport.org/join for further information.

News

Loneliness of the long-distance (J-pouch) runner

Illness and J-pouch surgery were no obstacle to a former triathlete’s ultramarathon success. Everyone with a J-Pouch is a winner!
Just ask Tom Plater.

Good marathon runners are a rare breed – and outstanding ones a very rare species indeed. RLG member Tom Plater, who’s specialist skills are marathons and ultra-marathons, is certainly one of the latter. A red-blooded Lion to his core, you might well say. But what makes Tom’s latest achievements even more remarkable is that he has a J-pouch.

Four years ago this 37-year-old former triathlete and ironman faced a markedly different test of his resolve and stamina when he discovered he had FAP (familial adenomatous polyposis), a condition that, if left untreated, can lead to bowel cancer. Soon after the diagnosis, Tom was told by two St Mark’s Hospital consultants that he would need surgery to create a J-pouch. Recovery would be tough, but he would be able run again, they said.

Brave to a fault, the optimistic consultant project manager says: “Even as I was being bombarded by new information, well-informed advice on recovery and cautions about my mental wellbeing, I’d already fixed my sights on getting back to normal,” During his six months with a stoma, Tom started running again “wearing baggy clothes”, as well as local cycling trips and “finding evermore reasons to not go to the office”.

However, as Tom says, his first run post-op was “terrifying and the decisions to be made endless “. So, he resigned himself to being a gym bunny, never venturing outdoors. Then one day he spoke to a friend whom he’d met during his earlier Army career who said he was organising a marathon in the famous Brecon Beacons. Tom duly signed up.

“l leapfrogged from marathons into the unnatural world of Ultras (ultra-marathons)“

“The event turned out to be a huge confidence boost and a return to my love of being in the hills with friends,” says Tom.

Then the following year, 2020, the intrepid runner leapfrogged from marathons into the unnatural world of Ultras [ultra-marathons] when he entered a 100km race. To get into shape for the event, Tom adopted a keto/high-fat/low carb [carbohydrate] diet (HLFC), the theory being that fat-burning ketones reduce the volume of food needed during a race and so lessen the risk of any malfunctions. Aided by the relentless encouragement of his family and friends, Tom “stumbled to the finish of the race in 12hrs 29mins”.

Then he heard about an even more challenging event – the North Downs Way 100 – a 100-mile-long ultra-marathon that was being run over the national trails of Hampshire, Surrey, and Kent.

“100 miles of non-stop running, utilising a digestive system that is no longer capable of letting me sleep for more than two hours in one stretch was a totally ridiculous idea. But the madness of it relieved most of the worry throughout my training and into the build-up for the race” says Tom. And Tom also had a secret weapon – a handy little bag of M&S Percy Pigs.

“I got to the start-line totally convinced that with these gummy children’s sweets and another product called Tailwind nutrition for athletes, I could complete at least 37 miles of the race in one stretch with no J-pouch malfunctions” says Tom.

“After finishing that first third of the race, I found the rest of the course was made up of glorious off-road trails and the becalming effects of a hot English summer’s day.

As ever, Tom kept a nary eye out for any source of relief. “I did my best to let go of my anxiety when facilities weren’t at the marked aid stations and made the most of the euphoria of seeing an unexpected loo stop when it appeared,” he says.

Eventually Tom achieved his pre-race goal of completing the race in under 24 hours – not one of his fellow competitors realising that this former triathlete had recently had two major operations and was the proud owner of a unique piece of man-made anatomy.

Tom’s ultra-marathon efforts also raised £2,350 for the St Mark’s Hospital Foundation and £1,350 for the Help for Heroes military charity.

As this brave Red Lion says now: “I am convinced that a J-pouch can reach whatever goal is on its owner’s finish- line.”

Congratulations Tom!

Jason Bacon, CEO of the St Mark’s Hospital Foundation, commented: “As someone who enjoys running and occasionally gets out for a 10k or half marathon race I stand in awe of Tom Plater. Tom’s run was a truly remarkable feat and raised £2,350 for the Foundation for which we are truly thankful. “Importantly Tom also raised awareness that having a pouch is not an impediment to achieving extraordinary physical feats.“

See pouchsupport.org/join for further information.

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References:

Attend our regular monthly J-pouch forum on zoom

Attend our regular monthly J-pouch forum on zoom

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