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Meet St. Mark’s award winning pouch nurse twins

Meet the St Mark’s twins who have identical careers – and awards

Next time you visit St Mark’s Hospital pouch nurse department you may think you are seeing double! Read a profile of the famous St. Mark’s Hospital pouch nurse twins.

Christoper Browne, Roar! editor writes…..

Petya and Rali Maranova. Their names may be different but that’s probably the only feature the two St Mark’s Hospital stoma and pouchcare nurses don’t have in common. Almost everything else about them is identical.

The twins were both born and brought up in Bulgaria and while they were at school their parents moved to Italy, the intrepid duo later joining them and then jointly deciding to train as nurses.

“We always liked the idea of nursing and our parents kept encouraging us to consider it as well as they thought it would be a great fit for us,” says Petya.

So the twins studied for their nursing degrees while they worked on the wards of local Italian hospitals. “Almost as soon as we started our clinical placements we knew that we wanted to look after stoma and pouch patients,” adds Petya.

Their next move was to Ireland where they worked on several general surgery and colorectal wards, commuting to Italy’s world-famous Padua University to study for their masters’ degrees in stomacare and incontinence rehabilitation. Both were awarded honours degrees.

Two years ago [in 2019], after spending a year in the urology ward of a London hospital, the twins joined St Mark’s Hospital – Rali as a specialist stoma nurse and Petya as a specialist pouch nurse [She is now the hospital’s lead nurse for pouch- and stomacare].

“Joining St Mark’s has been an incredible opportunity and a dream of ours, and we couldn’t be happier to be part of this amazing place and especially our team – with everyone always being very welcoming, supportive and caring,” the twins said.

“We have gained great experience in looking after stoma, enterocutaneous fistulae and pouch patients on both acute wards and in nurse-led clinics as well as participating in research, department audits, protocols development and in-house staff education,” they said.

The twins recently gained national recognition when they won the silver medal in the 2023 BJN (British Journal of Nursing) awards in the Stoma Nurse of the Year category and gained four nominations and a “highly commended” in the 2022 Nursing Times and Association of Stoma Care Nurses awards.

Petya commented: “This is a joint team silver – or runners-up medal – for the St Mark’s stoma- and pouchcare team. We are very proud of this achievement and hope to continue doing amazing nursing work for all our patients.”

But how do this incorrigible pair cope when hospital staff, patients and families can’t tell one from the other and mix up their names and identities? “I think it was confusing for our colleagues at first, but now they can tell us apart – most of the time,” quips Petya.

The Bulgarian-born sisters have identical interests too. At their home near the hospital, they have a small menagerie of pets, enjoy a mutual love of baking and are fanatical Liverpool FC supporters.

Petya & Rali with the St. Mark’s Pouch Nurse team at BJN awards ceremony.

A version of this article first appeared in the Summer 2021 issue of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.

Do I need to take the NHS bowel screening…

Do I need to take the NHS bowel screening (FIT) test if I have a J pouch?

The NHS in England invites people over 60 to take part in a bowel screening programme and you may have received an invitation to participate. The test requires you to send a poo sample and the test is called a faecal immunochemical test, or ‘FIT kit’ for short. The test detects blood in your poo (blood you would not notice by eye).

However, people with an internal ileoanal pouch (j pouch, w pouch etc) do not have a colon. So, is bowel screening necessary or relevant?

I have raised this question and been advised by respected colorectal consultants and the St. Mark’s pouch nurse team that the test is NOT relevant for anyone with a pouch and, if you have a pouch, you may safely decline. Of course, taking the test itself will do you no harm, but the results will be meaningless and misleading.

If you are in doubt, discuss with your own colorectal team.

See https://www.gov.uk/government/publications/bowel-cancer-screening-benefits-and-risks/nhs-bowel-cancer-screening-helping-you-decide for details of the test, but this article makes no reference to the significance of having a j pouch.

A brief history of St. Mark’s hospital

What’s in a name? Quite a lot it seems, especially if it’s about somewhere as familiar to all of us as St Mark’s Hospital reports Christopher Browne. In this article, Chris recounts the history and various identities of St. Mark’s, from it’s foundation in 1835 to it’s current status as the National Bowel Hospital in 2023.

Our name game begins in 1835 – almost 180 years ago – when the predecessor of St Mark’s Hospital was founded by a surgeon called Frederick Salmon. It’s name? The Infirmary for the Relief of the Poor afflicted with Fistula and other diseases of the Rectum and Lower Intestines.

Proud but loud, you might say!

This tiny infirmary of one room and seven beds was based at 11 Aldersgate Street in the City of London, and admitted 131 patients in its first year. It was often referred to as the Fistula Infirmary and was financially supported by the City of London council.

The Lord Mayor, William Taylor Copeland, was one of Mr Salmon’s first patients and was appointed president of the hospital. Another famous patient was the author Charles Dickens who blamed his need for surgery on “too much sitting at my desk”.

After three years the number of patients trebled, so Salmon moved the infirmary to larger premises at 38 Charterhouse Square in London’s Islington. However, it kept on growing and 13 years later it moved to London’s City Road where a group of almshouses had been was converted into a 25-bed hospital.

The new hopital was opened on St. Mark’s Day – 25 April 1854 – and aptly enough renamed St Mark’s Hospital for Fistula and other Diseases of the Rectum.

But wait for it. Bigger things – or should I say names – were to come. The hospital’s soaring workload meant it needed to expand onto an adjacent site in City Road.

However, the costs for building the new site kept on soaring until the by now struggling hospital faced almost certain closure.

Enter Lillie Langtry, the illustrious American actress. In 1909, Miss Langtry organised a charity matinee performance at her theatre in London’s Drury Lane and raised enough money to rescue the project.

Once again the hospital was renamed – this time as St Mark’s Hospital for Cancer, Fistula and Diseases of the Rectum to reflect the work and interests of John Percy Lockhart-Mummery, who was the hospital’s senior surgeon and a pioneer in cancer surgery. Lockhart-Mummery’s colorectal work earned him the nickname “King Rectum”.

Frederick Salmon – Founder of St. Mark’s Hospital

The hospital continued to expand and in 1948 it became part of the new National Health Service (NHS). The same year Francis Avery-Jones became the hospital’s consultant gastroenterologist, a post he held for 30 years until 1978. His work earned him the soubriquet “the father of gastroenterology”. He was also the pioneer of treatment for the peptic ulcer.

St Mark’s was run jointly with Hammersmith Hospital until the NHS reforms of 1972 when it forged a close partnership with London’s famous St Batholomew’s Hospital (commonly known as Bart’s). In 1995, it became part of the North West London NHS Trust and moved to a site next to Northwick Park Hospital.

St. Mark’s remained at the Northwick Park site until 2020. However, as a result of Northwick Park being a front-line hospital during the COVID crisis, most of the St. Mark’s services were moved “temporarily” to the nearby Central Middlesex Hospital, at Park Royal. In 2022, this move became permanent.

But hold on a minute, I can feel a name change coming on. Can you? Nothing so titillating I’m afraid. The hospital’s title gradually contracted to the now familiar St Mark’s Hospital.

Until recently. One of the many recent initiatives by the St Mark’s Hospital Foundation was to give the hospital’s name more authority by adding ‘The National Bowel Hospital’ to its title.

So stop the presses! We’re now known as St Mark’s, the National Bowel Hospital & Academic Institute.

Jason Bacon, the Foundation’s CEO, says: “It’s a recognition of our status as the UK’s primary centre for tertiary referrals: our complex cancer service has grown exponentially, while the title also recognises our national reputation for IBD and the recent influx of younger IBD patients to the hospital.”

Christopher Browne
RLG Commitee member and ROAR! editor

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.

Another article about the history of St. Marks Hospital can be found at https://www.stmarkshospitalfoundation.org.uk/about/history/. Patients that have previously been treated at the old St. Mark’s building at City Road, London, may be particularly interested to see the video/documentary providing a tour of the building following it’s conversion to an upmarket apartment block.

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.

See pouchsupport.org/join for further information.

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.

Gold and silver for St Mark’s pioneering pouch care…

Gold and silver for St Mark’s pioneering pouch care team

Well, well, well! They’ve done it again! The much-admired pouch and stoma care nursing team at St Mark’s Hospital have won yet more accolades for their caring skills.

The source of their latest triumph was the 2023 BJN Awards run by the British Journal of Nursing. St Mark’s Consultant Nurse Zarah Perry-Woodford was named Nurse of the Year in the BJN awards – a mere six months after she was nominated as Nursing Times Nurse Manager of the Year (See the Winter 2022-2023 Roar!).

To add even greater lustre to her win, the members of Zarah’s team, lead nurse Petya Marinova and pouch/stoma nurse Rali Marinova, won silver in the BJN awards Stoma Nurse of the Year category. This follows the team’s four nominations and a “highly commended” in the Nursing Times and Association of Stoma Care Nurses awards last October.

Commented Petya: “This is a joint team silver – or runners-up medal – for the stoma and pouch nursing team. We are very proud of this achievement and hope to continue doing amazing nursing work for all our patients.

The St. Mark’s Stoma and Pouch care team

“The award is for successfully delivering uninterrupted services throughout the Covid-19 pandemic, digitalising our services and publishing a stoma patient guide handbook – “Stoma Care – A Guide for Patients” – empowering patients to self-care throughout the pandemic and beyond.”

Jason Bacon, CEO of the St Mark’s Hospital Foundation, said: “The St Mark’s Foundation, members of the hospital trust and the staff of St Mark’s send a huge message of congratulations to Zarah and the whole team of remarkable nurses. We are delighted that Zarah Perry-Woodford has been awarded “Nurse of the Year” and the St Mark’s stoma and pouchcare nursing team won the silver medal for the BJN Stoma Care Team of the Year.”

Jason Bacon – CEO of St. Mark’s Foundation

Added Petya: “We are all extremely proud of Zarah Perry-Woodford’s well-deserved achievement, as it is testament to the amazing work she has done over the last 20-plus years, and especially the last couple of years, leading the pouch and stoma care team through the Covid-19 pandemic and beyond, ensuring services are maintained in a safe and effective way, and going above and beyond in order to ensure the safety of the team, and guaranteeing that patients are well supported with uninterrupted service throughout the pandemic and beyond.”

Christopher Browne
Trustee and ROAR! editor

My Medena Catheter Conversion

By Christopher Browne
Originally published in ROAR! Issue 39: Christmas 2008.

I’ve just had to pay a large fine for wasting hospital time – or at least I should have done. That’s the view of a stomacare nurse when I told her I’d started using a Medena catheter for the first time.

“Just think, you’ve spent twelve years hanging around in hospital waiting-rooms, going to appointments with puzzled consultants and making worried phone calls about your troublesome pouch when all you had to do was use a catheter,” she told me.

And she was quite right of course. For in 1996 I was given one of these long thin plastic tubes by a nurse specialist at St Mark’s to try and clear my reluctant pouch.

I went home and after eyeing this gangly-looking object a few times, decided to take the plunge. I pushed it up my backside, and waited for some action, but nothing happened. “There must be something stirring in there,” I thought to myself and tried again a few days later. But once again not a drop. Niente. Nothing.

The next day I phoned the nurse specialist who’d given me the catheter and told her I couldn’t get it to work. She was philosophical and said I’d have to find another way to solve my problems.

So I forgot about catheters until earlier this year when I saw Simon McClaughlin, a St Mark’s research fellow, about my pouch-emptying difficulties. He tested, scanned and probed with aplomb as he sought to find the causes. All the results showed a fairly normal-looking pouch. “But I’m having all these blockage problems whenever I go to the loo,” I said. The refrain I’d used with every other consultant I’d visited. He said the various post-pouch ops I’d had for ulcers and dilation had left scar tissue and lesions in parts of the anus.

I had two options. One was to use a Medena catheter. The second was more drastic. Abandon the pouch and have an ileostomy.

I booked an appointment with Beccy Slater, a pouch specialist nurse at St Mark’s. On the day of the visit, Beccy asked me to lie on my side and gently inserted a catheter up my backside. A few seconds later a giant tidal wave cascaded down Harrow-on-the-Hill (at least that’s what it felt like). For my pouch emptied like it had never emptied before as kilo after kilo seemed to pour into Beccy’s red bucket.

“You’re doing well,” she said reassuringly. Then she handed me the catheter and asked me to do the same. I took the plunge and “whoosh” another outpouring. “This is turning into something like fun,” I thought when I realised the catheter really worked after all. Beccy was positively glowing too and I went home a happy man.

That was six months ago. Since then my life has been transformed. I can relax, instead of mildly straining, on the train to work, I can write news stories without having to pause for a comfort – or in this case discomfort – break and I can visit friends and go to dinners, parties and social events feeling upbeat and cheerful. I even went on an eight-hour flight to Miami with no real problems recently.

Why did my catheter conversion take so long? There were two reasons. The first was ignorance. The nurse who first gave me the tube assumed I knew how to use it. However instead of pushing it seven or eight inches up my backside, I’d assumed it started about two inches from my so-called entry-point. So my weak thrusts were in vain.

The second reason was reluctance. No one exactly relishes endoscopes, surgical devices or thin plastic pipes being pushed up their backsides, however many times they might occur. But some are braver, or more determined, than others. I was one of the others.

However Mr Timid has been replaced by Mr Bold. I have used the catheter every day since June this year, visiting the loo two to four times – instead of nine to 10 times – in 24 hours. Each time I use four to six syringes of water (this depends on liquidity and some people may need less) to help ease the stools through. At first I used Lignocaine on the tip of the catheter. I now find wetting it works too.

Each visit takes 9-12 minutes which is only half-an-hour a day. Before I spent at least 90 minutes in the loo. I also find I don’t need to go to the lavatory the normal way anymore. I go just after breakfast and immediately before bedtime and try to fit in at least one visit in between – although I found using a catheter at work tricky at first. My company’s loos are grouped side-by-side with slim partitions between them. My solution was to use one that had been set slightly apart from the others on another floor in the building. Fortunately most offices have self-contained loos and you’ll find those slightly longer visiting times are offset by only needing to go once during the working day (some may need two visits).

Six months later I am living a simpler, easier and more controlled life. In the day I am a buoyant, far more sociable and, I like to think, effective human-being. Just as Simon said I would be. I also sleep better as I don’t have to get up in the night to go to the lavatory.

My advice is this: if you’ve ever had any qualms about using a catheter, persevere or make an appointment with your local pouch specialist and ask him or her to show you how it works. You may be reluctant at first but once you’ve succeeded, you’ll never look back.
As for me, I’ll always be grateful to Simon and Beccy for converting a once bashful patient into a Catheter Convert.

If you’ve any concerns or want to discuss using a catheter, please contact me on 07939 110842 or cbrowne@brownemedia.co.uk I’ll be happy to talk to you. Or for a more professional opinion speak to your hospital’s stomacare department.

You can read all about Medena catheters in Simon McLaughlin’s exclusive survey in a recent issue of Roar!

See pouchsupport.org/join for further information.

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.

Red Lion Group website hits 200K views!

Updated 4 January 2024

In 2023 we were really proud to have reached the milestone of 100K views. Since we revamped and rebranded the Red Lion Group website as pouchsupport.org in 2018, in 2023 we reached 100,000 views, from over 30,000 visitors, from 135 different countries. I think that is pretty impressive for a website focused on such a niche medical condition, but the most important thing is that we are providing help and support to so many pouchees and prospective pouchees out there!

Updated 31 January 2025

Another Milestone reached. We have now had 200,000 views. The picture below shows how the website traffic has grown month by month since the inception of pouchsupport.org in 2018.

Website Views since 2018 – Update 31.01.2025

The picture above shows how the number of views has increased year on year since we went live with the new website in 2018. On 31 January 2025 we hit 200K views.

The next picture shows the most popular posts and pages for the whole of 2023.

Although Red Lion Group is primarily UK based, our website visitors and Red Lion Group membership spans the globe. Picture below shows the top 10 countries by viewer number (as of 6 December 2023)

Top 10 Views by Country (Update 16.09.2024)

To see the full list of countries (to 6.12.2023), see the video below. There are some interesting names!

Website view by country (updated 6 December 2023) Hint – Drag the slider to scroll at your own pace!

We continue to enhance the website, and you will probably have discovered the new enhanced FAQS (frequently asked questions) page, and the Search function has been recently enhanced to improve the search experience.

We hope that our website growth will continue onwards and upwards and thank you all for your continued support.

Gary Bronziet
RLG Membership Secretary and IT support

J Pouch and Vitamin B12 deficiency

J Pouch and Vitamin B12 Deficiency

It is very common for patients with ileo-anal pouch (J Pouch) to suffer with B12 deficiency but this may not be picked up by routine blood tests

Vitamin B12 is absorbed in the end ileum, which in the case of J pouch patients has been removed. It is therefore very common for J pouch patients to suffer from Vitamin B12 deficiency.

Unfortunately, routine blood tests to show B12 deficiency can be unreliable as described in the NHS paper on the subject: Click on the link below.

NHS Diagnosis: Vitamin B12 or folate deficiency anaemia

In particular, this paper explains that

A particular drawback of testing vitamin B12 levels is that the current widely used blood test only measures the total amount of vitamin B12 in the blood
This means it measures forms of vitamin B12 that are “active” and can be used by the body, as well as the bound or “inactive” forms, which cannot be used by the body
If a significant amount of the vitamin B12 in the patient’s blood is inactive, a blood test may show normal B12 levels, even though the patient cannot use much of it and might have Vitamin B12 deficiency
This is why it’s important for symptoms to be taken into account when a diagnosis is made.

Signs and symptoms of Vitamin B12 deficiency

In summary, it is recommended that if a patient with a J Pouch presents with relevant symptoms, they might well benefit from B12 supplements (usually in the form of B12 injections), even if blood test results show the B12 level is within the normal range.

Pouch B12 deficiency for GPs

B12 deficiency is common amongst patients with ileo-anal pouch. However, the routine blood test to check for B12 deficiency is unreliable. This document, produced by the Pouch Nurses at St. Mark’s Hospital London, explains why the blood test may be unreliable and can be shown to a GP if you feel you have the relevant symptoms.

Download Now!1729 Downloads

Medic Alert Card

We have also updated the Medic Alert information on our website to provide a full explanation of this B12 deficiency phenomenon. The medic alert page contains a comprehensive description of what ileo-anal pouch surgery involves and the issues and challenges faced by people living with an ileo-anal pouch. The reality is that ileo-anal pouch surgery is performed relatively rarely, and its possible that you may be the only pouch patient registered with your GP practice. It is understandable that you may know more about the procedure than your GP, and therefore you may both benefit if you share this information with him/her!

If you are a Red Lion Group member, you should have a “Can’t wait / Medic alert card“, which has a QR code which links to the medic alert information.

The Medic Alert online information and a downloadable copy can be found at pouchsupport.org/medic or by scanning the QR code on the card.

The Medic Alert information has been created by the Red Lion Group, with support from the Pouch nurses and Consultants at St. Mark’s Hospital the UK National Bowel hospital and pioneers in the field of the ileo-anal-pouch.

For further information about the Red Lion Group “Can’t Wait / Medic Alert” card click here.

Meet St. Mark’s award winning pouch nurse twins

Meet the St Mark’s twins who have identical careers – and awards

Do I need to take the NHS bowel screening…

Do I need to take the NHS bowel screening (FIT) test if I have a J pouch?

A brief history of St. Mark’s hospital

How one pouchee maintains good pouch function

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

What’s the lifespan of a J pouch?

What’s the lifespan of a J pouch?

Gold and silver for St Mark’s pioneering pouch care…

Gold and silver for St Mark’s pioneering pouch care team

My Medena Catheter Conversion

My Medena Catheter Conversion

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

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

Red Lion Group website hits 200K views!

Red Lion Group website hits 200K views!

Updated 4 January 2024

Updated 31 January 2025

J Pouch and Vitamin B12 deficiency

J Pouch and Vitamin B12 Deficiency

Medic Alert Card

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The Red Lion Group is a UK registered charity number 1068124