The St Mark’s Hospital Stoma and Internal Pouch care team is in the process of conducting a study on gastrointestinal effects of Covid in stoma and pouch patients and they have asked us to share the link to their online survey.
See the link below for further information and to take part if you choose to do so.
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
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
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
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.
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.
Red Lion Group member, John Weight, describes his journey from UC sufferer to pouch recipient (hospital waiting lists were not the only problem!) – and recounts some of his pouch adventures.
As John Weight points out: ‘Surgical procedures and patient outcomes have undoubtedly improved since I had my pouch operation. And new pouchees are now far less likely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions that I did. In short, the patient journey today tends to be much smoother than before.’
It all started in 1979 when I was diagnosed with UC, or was it Crohn’s? It took doctors 10 years to decide before they erred on the side of ulcerative colitis in all probability. My bowel healthcare problem had been getting progressively worse. I was down to 9st. 4lbs and a daily dose of steroids was not having any apparently beneficial effect. Surgery was suggested several times but a colostomy bag or ileostomy for an active young man was not an acceptable option for me.
In 1988, I was referred by my local consultant to Central Middlesex Hospital for an in-depth internal examination. At the end of my stay the specialist consultant came to my bedside and told me that my large bowel lining was showing signs of dysplasia (a pre-cancerous stage) and that surgery was now very strongly recommended. I was stunned but I still expressed my reluctance to go down this path. However, he went on to tell me of a relatively new surgical procedure involving the formation of an internal ‘pouch’ instead of an ileostomy.
This seemed too good to be true. He asked me if I would agree to a referral to the consultant surgeon John Nicholls at St Mark’s Hospital, then based in London’s City Road. As the senior registrar to Sir Alan Parks, he was one of the pioneers of this technique, later becoming a professor and, of course, a patron of the Red Lion Group.
Several months passed before I travelled to City Road to meet Mr Nicholls. He was very direct in his approach and very thorough in detailing the surgical procedure involved supported by some freehand sketches – a wondrous piece of re-plumbing and not without risks that he was also careful to explain.
Statistics at the time recorded a 1-in-10 chance of failure – an acceptable risk I thought, not that I had much choice now, so an in-patient stay was booked for the stage one operation – a colostomy and the construction of a J-pouch. The stage two closure would follow two months later. I could just about cope with that! My employer agreed to give me four months’ paid leave so all I had to do now was wait.
My first in-patient booking was postponed so all plans and arrangements had to be stood down – which meant another long wait.
In the meantime, I thought I would spend a weekend in Oxford visiting friends and taking my mind off the impending ordeal and perhaps enjoying a curry and a few beers. Unfortunately, it was not the curry that put me back in hospital again but the cryptosporidium parasite that had been piped in that weekend from Farmoor Reservoir which supplies Oxford’s water.
The news bulletin at the time advised children and the elderly to take extra care as the “parasite can cause gastrointestinal illness with diarrhoea in humans”. So, for someone like me with UC it was a disaster!
I spent two weeks in High Wycombe General Hospital on 40mg of intravenous prednisolone before my condition was brought under control. Once back on my feet and feeling better I returned to Oxford – this time to include a light game of tennis. But it wasn’t long before the ambulance was on court – I had ruptured my left Achilles tendon! I put this rather unfortunate accident down to the fact that my muscles and tendons must have been weakened by the earlier high doses of corticosteroids.
So, off to Oxford’s John Radcliffe Hospital for a knee-high plaster cast with an embedded high heel to reduce the strain on the tendon. It would be some months before this would be removed and my rescheduled bowel operation was only a few weeks away!
The taxi arrived alongside the entrance steps to St Mark’s Hospital. The driver jumped out and opened the rear door for me as if this was a celebrity arrival – get me out of here! I struggled to extract myself from the rear of the taxi holding a pair of aluminium crutches loaned by John Radcliffe Hospital.
Once afoot there was no stopping me as I hopped up the entrance steps. There was no going back! The pre-admission nurse looked a little perplexed. I tried to pretend this was just another routine hospital visit – I’m a regular now, well into double figures since the start of my UC. She filled in the requisite pre-admission forms and checks and then disappeared.
Half an hour later she returned – “I’ve spoken to the surgical team, and they can rig up a hoist for your [plastered] leg”. It seemed like a marathon getting this far but I was ‘in’, and Mr Nicholls would very soon be scrubbing up.
And so it came to pass that I slowly emerged into a new world without a colon, a tummy with a railway track of staples down the middle and tubes coming out of every orifice! “Are you awake Mr Weight – would you like a sip of water”? Within hours I was being escorted around the ward with one crutch and a saline drip instead of the other to avoid any risk of deep vein thrombosis.
My progress was good, and I was discharged after two weeks with ample supplies of colostomy bags and stoma templates. I bought a pair of high-waisted trousers to make life a little more comfortable. The promised two-month wait for the return leg became three before I was finally booked in for the closure. At last, I would be ‘normal’ again, all joined up and no plastered leg encumbrance this time.
The next 10 days in St Mark’s passed fairly quickly – getting used to my new bowel configuration and getting fit again by walking up and down the stairs to the courtyard garden as often as I could with the occasional loo stop. The nursing staff omitted to tell me about the pouch stool acidity caused by the residual gastric acid, so I was a little sore initially. The acidity would have been neutralised by my large bowel had it been present. So, this was the time that meticulous cleanliness and barrier creams entered my life.
Two months after being discharged and I was back for a post-op review. I had been getting leakages, typically when out shopping. My pouch output seemed quite fluid. The consultant thought I might have pouchitis and prescribed 500mg Metronidazole suppositories. I have been on them ever since – over 33 years. Without them I simply could not survive. For years now I have been using two to three suppositories a week on average – they seem to keep the inflammation in check even though repeated use of antibiotics is generally not recommended.
Some years later another consultant suggested a two-week blitz of Ciprofloxacin and Metronidazole tablets to completely remove the inflammation rather than maintain it at a low level. However, within five days of completing this regimen the pouchitis had returned.
For the first 10 years of living with my pouch I was not troubled with it at all. I put weight back on, I travelled all around the world, played football, windsurfed, skied, and swam – life was back on the fast track save for a few unpleasant derailments – the dreaded adhesions and attendant agonising bowel blockages. Most times these would sort themselves out within a few hours or overnight. However, on four occasions a hospital in-patient stay was necessary – twice in Luton, once in Walsall and once in Male in the Maldives.
The Walsall stay was the scariest – no bowel movement for seven days. The surgeon was seriously considering operating when suddenly there was some movement. I think it must have been the onset of panic. I can’t say how happy I was to get out of there unscathed! The Maldives experience does merit some mention as the costs were covered by a Red Lion Group recommended insurer at the time.
The episode occurred the day before we were due to leave Komandoo Island to return to the UK. After a night of severe colicky tummy pain my wife Debbie called the island resort reception for a doctor. The nearest was stationed on a larger island nearby, a 30-minute high-speed motorboat away. On arrival the doctor administered some painkillers and muscle-relaxing medication and arranged for a transfer to a hospital in Male, the capital of the Maldives.
I had to go back on the motorboat with the doctor to the neighbouring island where I would catch the scheduled seaplane flight to Male. Debbie frantically packed our suitcases while I looked on helplessly. Four of the resort staff turned up with a wooden door that had just been removed from its hinges – this was the best they could do for a stretcher! – I was loaded on board and lugged along the sandy track through the palm trees to the jetty, stopping along the way for each of the bearers to change corners and swap load-bearing arms.
Overhead, the sun burned down both blinding and cooking me on this makeshift hotplate. By the time we reached the jetty the colicky pains had returned. I was carefully laid down to rest while my wife settled the hotel bill, and the boat was prepared for departure. I don’t remember much about the sea or air journey to Male, just the acute pain and the concerned faces of helpers and onlookers. At the airport, a water taxi and then an ambulance ride got me to the allotted hospital.
I was put on a drip and given some more medication and allocated a room with two single examination beds but no bedding. My wife checked in at a nearby four-star hotel – the one the BA pilots used as it turned out. By 5pm that day my bowels started moving again and I began to feel a lot better – even so I had to spend the night at the hospital for observation. The other spare bed in my room was in continual use with the comings and goings of local patients and their families – I think it must have been an A&E side ward.
At one time a pregnant woman was there with an extended family of about eight people. It wasn’t possible to get any sleep until about 1am when everyone had eventually filtered away into the night. The next morning, I needed to get discharged quickly – as there was every possibility I could still catch my 10:00am BA flight home and return to the original holiday schedule. A young man from a local travel service company that our tour operator used to facilitate the transfer of its clients to and from the outlying islands turned up early to help me with my discharge. He had visited me in hospital the night before and was thus au fait with my predicament. He was an absolute star – helping with the discharge process, arranging the preparation of my hospital bill, and getting the medical report written up for my insurer – and all before 9:00am!
A truly amazing achievement! I grabbed all the paperwork and ran with my supporter to a waiting cab. Debbie was there with our luggage in the boot. We rushed to the airport and ran to the BA check-in desk. They were waiting to rush me through as my wife had chatted up the BA pilots the night before and explained my predicament.
I got to my seat and looked around at all the people meticulously stowing away their hand luggage as if nothing had happened. I had just travelled through some seemingly highly eventful time-warped journey and been deposited in seat 36B.
“Did you enjoy your holiday,” asked the lady seated on the aisle side of my seat. “Beautiful place, lovely people,” I recounted – “still, it will be good to get home”.
Footnote: It’s worth highlighting the much improved surgical procedures and patient outcomes since 1989. And that new Pouchees are unlikely to experience the number of adhesions, subsequent bowel obstructions and emergency hospital admissions as John did.
A version of this article first appeared in the Summer 2016 issue of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994. See pouchsupport.org/join for further information.
We are delighted to announce that Petya Marinova – Lead Nurse Pouch and Stoma Care, was presented with the Healthcare Honours, New Talent Award, 2023. The awards ceremony was held at the Houses of Parliament on Thursday evening, 23rd November, showcasing NHS leadership and management roles.
The New Talent award shortlisted individuals with up to 5 years of experience in a leadership or managerial position who had shown remarkable potential as a leader and made outstanding contributions to their organisation, either on their own projects or in support of colleagues and/or more senior leaders. The nominee could be in a clinical or non-clinical leadership role, which provided some stiff competition but Petya claimed the prize for us all. We are so proud of her.
The Stoma/Pouch Management Team – Zarah Perry-Woodford and Petya Marinova were also shortlisted and Highly Commended for the Improving Outcomes: Management Team Award which highlighted an NHS management team, from any specialism or area, that made active improvements with a demonstrable impact on outcomes within (or even beyond) their area of responsibility.
They were also shortlisted for the Nursing Times Workforce Summit 2023, Best Use of Workplace Technology but sadly we didn’t get gold this time!
For further information about British Journal of healthcare Honours see https://www.healthcarehonours.com/
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.
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.
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.
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.
You can download a copy of the treatment algorithm below :-
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.
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.
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.
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.
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”.
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.
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:
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.
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 also Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis
A version of this article first appeared in ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994.
See pouchsupport.org/join for further information.
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