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Stories

Stories

What’s the lifespan of a J pouch?

What’s the lifespan of a J pouch?

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

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

Pam Everitt

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

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

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

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

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

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

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

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

Sylvia Panford

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

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

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

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

Jean Reed with grand-daughter

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

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

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

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


Janindra Warusavitarne

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

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

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


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

See pouchsupport.org/join for further information.

News

ACPGBI accreditation for St. Mark’s Hospital

ACPGBI accreditation for St. Mark’s Hospital

ACPGBI recommends that pouch surgery should only be performed in high-volume specialist centres. St. Mark’s has been awarded ACPGBI accredited status.

The following, from the ACPGBI (Association of Coloproctology of Great Britain and Ireland) website.


10 January 2023

The number of “pouches” performed for UC and FAP has steadily declined in recent years. There is however evidence of the occasional “pouch” being performed by individuals nationally.

ACPGBI Council now believes that this form of surgery should only be performed in high-volume specialist centres, by surgeons with sufficient expertise, working as a team. Council is therefore seeking Expressions of Interest for units to become accredited by ACPGBI in performing this form of surgery.


We are pleased to confirm that St. Mark’s Hospital has been granted ACPGBI accredited status.

For the full report and details of the criteria required for accredited status see https://www.acpgbi.org.uk/about/news/448/accreditation_of_pouch_units/)

Download the ACPGBI report below.

ACPGBI – Accreditation of pouch centres
ACPGBI – Accreditation of pouch centres
Download Now!531 Downloads
St. Mark’s Hospital granted ASCGBI acreditation
News

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!).

Zarah Collecting her award

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

Events

IBD Patient Day (Celebrating World IBD Day) at St.…

IBD Patient Day (Celebrating World IBD Day) at St. Mark’s

This year St. Mark’s Hospital Foundation is delighted to be hosting an IBD Patient day on Saturday 13th May celebrating World IBD day! 

This event is in partnership with our amazing clinical colleagues, and we would absolutely love to see you there. This jam-packed day features talks from members of the St Mark’s specialist IBD team, St Mark’s Surgeons and Consultants. 

This is an opportunity for patients to come together at Central Middlesex Hospital as the new home of St Marks.

The World IBD day theme is going to be “ageing well with IBD“, where we will connect people of all ages and offer support as they live with IBD.

Admission is FREE but registration is required. You can register here.

World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn’s disease and ulcerative colitis, known as inflammatory bowel diseases. You can find out more about World IDB day at https://worldibdday.org

Stories

My Medena Catheter Conversion

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!


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.

News

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

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”. 

Tom mid-descent

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 at the finish line

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.“

Tom Plater

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.

person holding pen pointing at graph News

Red Lion Group website hits 200K views!

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.


Posts and Pages 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


Events

New season of J-Pouch webcasts announced for 2023

Contents

Toggle
  • New season of J-Pouch webcasts announced for 2023
    • Ileoanal pouch formation and revisional surgery for pouch problems
    • Biofeedback and other techniques to help you empty your pouch
    • Advances in laparoscopic approach to pouch surgery
    • St. Mark’s Hospital, Pouch nurses
    • Kapil Sahnan – Consultant Surgeon,  at St. Mark’s Academic Institute.
    • Jason Bacon, latest research into robotic surgery
    • Uchu Meade, Head of Pharmacy at St. Mark’s Hospital

New season of J-Pouch webcasts announced for 2023

Following on from our highly popular J-Pouch webcasts on zoom in 2021/22, we are excited to announce that we will be repeating this in 2023 and we already have some top speakers lined up. An opportunity for J Pouch patients to see and hear from the foremost experts in the field of J-pouch surgery and the challenges of living with a J-pouch. Each talk will be followed by an interactive Q&A so a chance to put your questions to the experts. We will have some familiar and popular speakers from previous years, and also some new faces.

NEW THIS YEAR – we will also be LIVE STREAMING the webcasts on our Facebook Group!

We are delighted to announce that Valerio Celentano – head of the J-pouch one-stop clinic at Chelsea & Westminster Hospital – will be opening this years series on Thursday, 9th March on the subject of “Ileoanal pouch formation and revisional surgery for pouch problems“.

On Tuesday 16th May, you have the opportunity to see Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital, who will be speaking on Advances in laparoscopic approach to pouch surgery, and we also have lined up Professor Omar Faiz, Clinical Director and Consultant Colorectal Surgeon at St Mark’s Hospital, who will be talking about his pioneering research programme into robot technology (date to be confirmed).

Other speakers include Ellie Bradshaw – Using Biofeedback to help with Pouch emptying problems, Uchu Meade –Medication associated with j pouch and when to use them“ and there will also be a chance to meet the St. Mark’s Hospital Pouch Nurse team for an interactive Q&A.

Registration is required to attend the zoom sessions. To register and to see the details of other upcoming sessions, go to pouchsupport.org/events or click on button below.

Register Now


Ileoanal pouch formation and revisional surgery for pouch problems

Valerio Celentano – Head of J-Pouch One stop Clinic at Chelsea and Westminster

Mr Valerio Celentano – Consultant Colorectal Surgeon, Chelsea & Westminster Hospital NHS Foundation Trust

Date/Time: Thursday, 9 March 2023 at 7:30 pm (London time)

Ileal pouch-anal anastomosis (IPAA) after total proctocolectomy (removal of entire large bowel and rectum) is a surgical procedure for ulcerative colitis refractory to medical treatment and majority of patients with familial adenomatous polyposis (FAP), as an alternative to permanent end ileostomy. Although many patients undergoing pouch surgery have satisfactory functional and long-term outcomes results, the procedure is complex and associated with problems and complications in the short- and long-term. Several complications following pouch surgery can lead to the pouch requiring removal (pouch excision) or permanent diversion (need for ileostomy) and reported rates can be up to 20%. This spectrum of conditions carries the very unfortunate and likely inappropriate name of “pouch failure”. 

Gaining experience in pouch surgery is hard as the procedure is performed infrequently across many hospitals, as reported by the UK Pouch registry, outlining that the average number of pouches performed in English institutions was low and one quarter of the surgeons undertaking this operation had performed only one case over the last five years. The interactive talk will discuss the challenges of ileoanal pouch surgery and some of the surgical complications that can benefit from revisional (redo) pouch surgery. 

An institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery will also be presented.

For a detailed description please refer to :-

https://www.bsg.org.uk/service-success-stories/the-one-stop-ileoanal-pouch-surgery-clinic-a-multidisciplinary-patient-centred-approach/

Recorded 9 March 2023

Biofeedback and other techniques to help you empty your pouch

Recorded 26 April 2023

Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace

Date/Time: Wednesday, 26 April 2023 at 7:30 pm (London time)

Lively and exuberant speaker Ellie Bradshaw will let us into the secrets of biofeedback – a unique method of pouch-emptying. Ellie, who is based at the renowned Princess Grace Hospital in London, says she thrives on helping people manage their bowel and pelvic floor symptoms. Those traditional pelvic floor exercises will never be the same again!

See this publication by Ellie Bradshaw and Brigitte Collins – “Bowel dysfunction: “The comprehensive guide for healthcare professionals.” 

Register Now


Advances in laparoscopic approach to pouch surgery

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

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

Janindra Warusavitarne, a consultant colorectal surgeon at St Mark’s Hospital, is a pioneer in laparoscopic surgery (sometimes known as keyhole surgery). Janindra, who is a patron of Red Lion Group, will compare the laparoscopic approach with the more traditional  open surgery techniques.

About Mr Janindra Warusavitarne

Mr Janindra Warusavitarne, is a Consultant Colorectal Surgeon, specialising in intestinal failure, inflammatory bowel disease, Anal fistula, haemorrhoids and colorectal cancer.

He is the lead surgeon for inflammatory bowel diseases at St Mark’s Hospital, London, an honorary senior lecturer at Imperial College and conjoint senior lecturer at the University of New South Wales. He is part of the executive team conducting the European Board qualification for colorectal surgery and a visiting scientist to the Garvan Institute of Medical Research. In addition he sits on the education committee of the European Society of Coloproctology.

Janindra is considered a key opinion leader and innovator and has been involved in many new procedures such as video assisted fistula treatment and laser treatment for haemorrhoids and anal fistula.

Mr Warusavitarne relocated from Australia in 2010, when he was offered an appointment at St Mark’s Hospital in Harrow, a national and international referral centre of excellence for intestinal and colorectal disorders.

After completing his surgical training, Janindra undertook full-time research (focusing on the genetics of colorectal cancer) and was awarded a PhD from the University of Sydney, Australia. He has extensive experience in minimally invasive surgery and has been innovative in developing minimally invasive surgical techniques.

Date/Time: Tuesday 16 May 2023 at 7:30 pm (London Time)

Register Now


St. Mark’s Hospital, Pouch nurses

Zarah Perry-Woodford and Petya Marinova

Date/Time: Wednesday, 24 May 2023 at 7:30 pm (London time).

Presentation and Q&A with St. Mark’s Hospital award winning pouch nurse team. As you may have seen in a recent post, St Mark’s Consultant nurse Zarah Perry-Woodford was named Nurse of the Year in the BJN awards, and 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.

Their talk will cover

  • Pouch Nursing Service – new trends
  • Innovation in Pouch Care and
  • Ongoing support

This will be followed by a Q&A session. You will be invited to ask any questions in the meeting, but if you prefer, or wish to remain anonymous, you can submit questions by email to info@pouchsupport.org

Register Now


Kapil Sahnan – Consultant Surgeon,  at St. Mark’s Academic Institute.

Kapil Sahnan, Consultant Surgeon at St. Mark’s academic institute.

Kapil Sahnan – Consultant Surgeon,  at St. Mark’s Academic Institute.

Date/Time: Thursday 22 June 2023 at 7:30 pm (London Time)

Register Now


Jason Bacon, latest research into robotic surgery

Jason Bacon

Jason Bacon is the CEO of St. Mark’s Hospital Foundation

Date/Time: Wednesday, 11 July 2023 at 7:30 pm (London time)

A team led by Professor Omar Faiz, St Mark’s Hospital’s clinical director, has been pioneering a research programme into robot technology, financially backed by a St Mark’s Hospital Foundation fundraising campaign. In this talk, Jason Bacon (CEO of St. Mark’s Hospital Foundation) will give an update on this fascinating project.

Register Now


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

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

Date/Time: Thursday, 10 August 2023 at 7:30 pm (London time)

In her August webinar, Uchu Meade will be discussing the best recommended medications for pouch patients and the latest pouch related developments in pharmacy.

Register Now


Details of further Red Lion Group webcasts for 2023 will be added in due course.


Stories

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

See also Vitamin B12 deficiency following restorative proctocolectomy

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
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!1504 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.


News

Contacting the St. Mark’s Hospital Pouch Nurses (and other…

Contacting the St. Mark’s Hospital Pouch Nurses and other useful contacts (including PALS)

If you are a patient of St. Mark’s Hospital, you can contact the Pouch Nurse Team for advice by phone on 020 8453 2099 or by email at lnwh-tr.internalpouchcare@nhs.net

If you are not a patient of St. Mark’s, we recommend that you ask your GP for a referral. St. Mark’s Hospital is the UK National Bowel Hospital and accepts referrals from all over the UK.

You can find further details of the St. Mark’s Hospital Pouch and Stoma nurse team and how to refer a patient at https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Other contacts at St. Mark’s Hospital.

ST MARK’S SPECIALIST SURGICAL PRACTITIONERS – 
For surgical wound related problems or pre-assessment querie
s

Email: lnwh-tr.stmarkspractitioner@nhs.net 

ST MARK’S ENDOSCOPY – 
For Endoscopy procedure questions or appointments   

Telephone: 0208 235 4130
Email: lnwh-tr.endoscopy@nhs.net   

Website: https://www.stmarkshospital.nhs.uk/services-a-z/wolfson-unit-for-endoscopy/ 

ST MARK’S ADMISSIONS – 
For questions regarding your admission  

Telephone: 0208 235 4055
Email: lnwh-tr.stmadmissions@nhs.net 

ST MARK’S OUTPATIENTS – 
For outpatient appointments questions  

Telephone: 0208 235 4051/0208 963 8853
Email: lnwh-tr.smopd-appointments@nhs.net 

ST MARK’S IBD TEAM – 
For any IBD queries – e.g. IBD medications, Iron Infusion   

Telephone: Tel:0208 453 2368 (Advice line) /Secretary: 020 8235 4026,  Email: lnwh-tr.ibdnurse@nhs.net  

ST MARK’S INTESTINAL FAILURE UNIT – 
For Roundwood/IRU questions  

Telephone: 020 8453 2214
Email: LNWH-tr.IFU@nhs.net 

ST MARK’S NUTRITION NURSES – 
For Roundwood/IRU Nutrition nurses questions 

Telephone: 0208 235 4120
Email: LNWH-tr.St-Marks-Nutrition-Nurses@nhs.net

ST MARK’S BIOFEEDBACK – 
For biofeedback appointments and queries, contact the Biofeedback team

Telephone: 0208 453 2458
Email: 
lnwh-tr.biofeedbackphysiologystmreferrals@nhs.net

ST MARK’S MEDICAL SECRETARIES – 
For Consultant appointments and queries, contact your Medical Consultant secretary 

Dr Donnelly/Dr Gabe/Dr Holman’s secretary – 
Telephone:
 0208 235 4196
Email: dora.michaelides@nhs.net 

Dr Naghibi’s secretary – Telephone: 0208 235 4084  

Dr Amar Sharif/Dr Nikolaos Kamperidis’s secretary – 
Telephone:
 020 8869 3058
Email: Bharti.Huda@nhs.net 

Professor Hart/Dr Akbar’s secretary – 
Telephone:
 020 8869 5808
Email: sokantey@nhs.net  

ST MARK’S SURGICAL SECRETARIES – 

For Consultant appointments and queries, contact your Surgical Consultant secretary 

Miss Vaizey/Professor Faiz/Mr G Thomas’s secretary – 
Telephone:
 0208 235 4020 
Email: susan.russell6@nhs.net  

Mr Warusavitarne/Mr Mehta/Ms Williams’s secretary – 
Telephone:
 0208 235 4168 
Email: meeta.maru@nhs.net  

Ms E Burns/Mr A Antoniou/Mr I Jenkins’s secretary – 
Telephone:
 020 8235 4177 
Email: a.elie@nhs.net  

Mr Tozer/Miss Asha Senapati’s secretary – 
Telephone:
 020 8235 4195 
Email: rose.gonzalez@nhs.net  

Professor Clark’s secretary – 
Telephone: 
020 8235 4018 
Email: anne.wheelhouse@nhs.net

PATIENT ADVICE AND LIAISON SERVICE (PALS)

If you need advice about St. Mark’s services, don’t know where to turn to, or have concerns about your care, the Patient Advice and Liaison Service (PALS) is there to help.

For PALS contact information go to https://www.lnwh.nhs.uk/pals/

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