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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

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

Related articles

  • Top 10 most viewed J Pouch posts on pouchsupport.org
    Date
    March 16, 2025
  • J Pouch Support Facebook Group now on Red Lion Group website
    Date
    February 20, 2021
  • Christmas 2018 edition of ROAR! now available
    Date
    December 20, 2018

New season of J-Pouch webcasts announced for 2023

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.


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/

Important update for Medena Catheter users

Important update for Medena Catheter users

Updated 31 January 2023

Further to our previous update on 13, December 2022, we have been notified by Wellspect that the Medena catheter is now available to order. Product codes is 68735 which remains the same.

Note that the “Medena” catheter is now manufactured by YourRad, and when ordering, you should refer to it as an Ileostomy Catheter  (order code is 68735).

If you experience any difficulty in obtaining supplies, please contact Wellspect Ltd on 01453 791 763.

They are also available for home delivery from Bladder & Bowel  community See https://www.bladderandbowel.org/homedelivery/

Note that you will require a prescription from your GP to receive them via the NHS.

YourRad product information sheet

Updated 13 December 2022

After weeks of uncertainty, the UK-based supplier/manufacturer Wellspect has agreed to restart production of the Medena catheter.

Petya Marinova, St Mark’s Hospital’s lead nurse (pouch and stomacare), said: “We have been in close discussions with Wellspect and helping with whatever we can and they have agreed to restart production of the Medena catheter in the next two months“.

“It will be produced by a different company (YourRad AB in Sweden), but the design remains the same and Wellspect will continue as UK distributor. All existing Medena product codes should remain the same.”

Meanwhile, the St Mark’s pouchcare team have been analysing the results of trials on a similar product – the Marlen catheter. “If the Marlen catheter company decides to go ahead with introducing the Marlen product to the UK market it will take about 9 to 12 months,” said Petya.

“Meanwhile if someone is running low on catheters, our St Mark’s pouchcare team has enough Medena catheters to send emergency stock to whoever may need them.”

THIS IS FANTASTIC NEWS FOR ALL THE J-POUCH AND KOCK POUCH PATIENTS THAT RELY ON THE MEDENA CATHETER!


Updated 15 July 2022

Would you like to particpate in trial of a potential replacement product?

A significant number of J pouch owners use the Medina Catheter to assist with emptying their pouch. Following the announcement that the Medina Catheter is being withdrawn from production, we are pleased to announce that a potential replacement product has been identified and the Pouch Nurse team at St. Mark’s Hospital is now in the process of starting a trial with the new Marlen catheter.

They are currently working closely with the company to introduce the product in the UK, including Drug Tariff approval.

The plan is to start officially trialling the Marlen catheters, hopefully at the beginning of August (pending delivery and logistics).  

We wish to help them by identifying existing medina catheter users who would like to participate in the trial. They will be looking for a small sample of 10-15 people initially.  

All participants would need to provide feedback and agree for their anonymous testimony to be shared and used in research. 

If you are interested in participating in this trial, would you please send your details to info@pouchsupport.org. Further details will be provided in due course.


Updated 24 November 2021

The following response was received from the marketing manager at Wellspect on 5 November 2021

We are still actively looking at potential alternative products. We have one promising option we are exploring at the moment, although it is not currently available in the UK. If it proves suitable, the next step would be to find a UK distributer willing to take it on. I have kept your contact details and will let you know how this progresses. 

In the meantime, we have sufficient stock of the Ileostomy catheter and have not yet taken a decision on the eventual date for discontinuation in the UK. On current usage rates we have significantly more than 6 months available. While I completely understand their concern, I would urge all users to continue to order as normal.


Posted 15 June 2021

Unfortunately, our ileostomy catheter is produced in very small volumes and global demand is both low and in steady decline. We have therefore had to take the difficult decision to discontinue this product.

At current UK usage rates we will have sufficient stock to continue supply for a minimum of 6 months. While there are no direct alternatives currently available on the UK Drug Tariff, we are actively looking at products with other manufacturers/suppliers which may prove suitable.

We’ll aim to keep you informed regarding an exact date after which the product will no longer be available on prescription and also if there is any progresses with alternative manufactures/suppliers.

In the meantime, I’d like to extend my apologies for any inconvenience this has caused.


We have responded explaining that, while they label the product an “ileostomy catheter”, it is in practise also used by many J Pouch (and other pouch) owners, and the planned discontinuance is causing much distress in the pouch community.

We will keep you informed of any updates in particular with regard to a replacement product.

On that subject, Theresa Parr (RLG committee member) has for some time been an advocate of the Aquaflush system as an alternative to the Medina Catheter. It is also available on prescription. See here for further information.

Attend IA Pouch Information Day featuring Richard Lovegrove

Attend IA Pouch Information Day on 21st January featuring Richard Lovegrove

The J Pouch subgroup of the UK Ileostomy Association (ia) is hosting an information Day on Saturday 21st January 2023 at Jury’s Inn, Birmingham

FREE for anyone living with, or considering, an internal pouch, this event has guest speaker, colorectal surgeon, Richard Lovegrove, along with other esteemed speakers.

Topics will include:

  • J Pouch surgery and who is suitable Pre and post op care
  • Diet and nutrition for J Pouch patients
  • J Pouch complications 
  • J Pouch follow up
  • and much more…
Richard Lovegrove, Colorectal Surgeon

Book your FREE place now!

Simply email: internal.pouch@iasupport.org

Includes interactive Q&A sessions and social chats with fellow ‘pouchies’.

You can download the official poster below:

IA Information day 2023 Poster
IA Information day 2023 Poster
Download Now!615 Downloads

St. Mark’s stoma/pouch team nominated for Nursing Times awards…

St. Mark’s stoma/pouch team nominated for Nursing Times awards.

The St Mark’s Hospital stoma and pouchcare team has been shortlisted in four categories for the Nursing Times Awards.

Updated 28 November 2022

The awards ceremony has now taken place. Although St. Mark’s did not bring home the awards, it was a great honour for them to be nominated and we at Red lion Group and on behalf of our members are very proud of them.

St. Mark’s Hospital Trust had a total of four nominations for the Nursing Times Awards, split over two separate events.

The first two nominations for the Nursing Times awards on 26th October 2022 were for the book “Stoma care – A Guide for Patients” Written by Rali Marinova, Petya Marinova and Zarah Perry-Woodford, which was nominated in the Patient Self Care Category, and for the Surgical and theatre nursing category.

The other two nominations were for the Nursing Times Workforce Summit & Awards, which was held on 22nd November. These are more management, workforce and service development-oriented awards that the Nursing Times holds annually. St. Mark’s had a nomination for Nurse Manager of the Year for Zarah Perry-Woodford, and Best use of technology for the Pouch/Stoma care department for digitalisation of services.

And in October St. Mark’s Stoma/Pouch Nurse team won second place in the Association of Stoma Nurses UK Award, for successfully maintaining services during the covid pandemic, producing patient self-care stoma handbook and digitalisation of it’s service.

For information how to contact the St. Mark’s Stoma/Pouchcare team see https://pouchsupport.org/contacting-the-pouch-team-at-st-marks-hospital/


The St Mark’s Hospital stoma and pouchcare team has been shortlisted in four categories for the Nursing Times Awards.

These are an important source of recognition as the Nursing Times, like the British Medical Journal, is one of the leading magazines in the medical and health sectors.

The awards ceremony will be held at London’s Grosvenor House Hotel on two dates.

The first two nominations are for the Nursing Times awards on 26th October 2022 when the St Mark’s team has been nominated for its book “Stoma care – a guide for patients” in the ‘Promoting Patient Self-management’ and also in the ‘Theatre and Surgical Nursing” category.

The second two nominations are for the Nursing Times Workforce Summit & Awards, which is on 22nd November when the team has been nominated for Best Use of Workplace Technology – Digitalisation of Stoma and Pouch Care Services and finally, Zarah Perry-Woodford has been nominated in the category Nurse Manager of the Year !

So let’s send the team our very best wishes – they certainly deserve to win!

St. Mark’s Hospital Stoma and Pouch Care team

J Pouch Videos on YouTube Channel

J Pouch Videos on YouTube Channel

For a number of years, the Red Lion Group has been building up an extensive J Pouch video channel on YouTube.( See YouTube.com/@PouchSupport )

These feature some of the most eminent experts in the field of pouch surgery and support on topics of particular interest to pouchees or those considering pouch surgery.

Many of these videos have been recorded at the Red Lion Group Information Days hosted at St. Mark’s Hospital and more recently over Zoom.

There are links to the various videos from relevant pages on the Red Lion Group web site (pouchsupport.org) in particular from the Resources Page. See pouchsupport.org/resources.

In addition, we have now added a direct link to the YouTube channel from the menu bar on the Pouch Support website. See below:-

PouchSupport.org Home Page showing new menu bar option

When you link to the YouTube Channel, you can browse all of the Videos sorted by Most Recent or Most Popular.

YouTube.com/@PouchSupport

Please support the Red Lion Group by becoming a member at pouchsupport.org/join

Living with J-Pouch or Stoma and affect on mental…

Living with a J-Pouch or Stoma and affect on mental health

A recent mental health survey of J-pouch and ileostomists by the psychologist  Zeina Bushnaq has found that most of those who took part showed higher anxiety levels, bouts of depression and greater body dissatisfaction than the average man- or woman-in-the-street. Despite this most participants reported a generally good quality of life.

Report author: Psychologist Zeina Bushnaq

The reasons are probably obvious. All the patients in the survey had been through bowel surgery which, as we all know, can be a significant period in our lives. Half of the 152 respondees, or 74, had pouches and an average age of 49 while the other 78 were ileostomists (average age 42).

All came from the RLG and Crohn’s & Colitis UK support groups, the GetYourBellyOut and Purple Wings charities and a number of Facebook and Twitter users.

The survey – which Zeina ran as part of her PhD in counselling psychology at Surrey-based Roehampton University – was particularly timely as the latest statistics show the number of people in the UK with inflammatory bowel disease (IBD) is continuing to rise.

“While the number of people with IBD, ileostomies and ileo pouches has increased over the past few years, research has mainly focused on the physical and medical aspects of these conditions instead of the emotional and psychological aspects. However as IBD diagnoses increase, so do the number of individuals experiencing psychological difficulties, specifically anxiety and depression (low mood),” said Zeina.

Her overview was that the survey’s participants showed high levels of anxiety, low mood (depression) – not mood swings, as that is quite different from low mood/depression – high levels of body image dissatisfaction and held negative attitudes towards mental health services.

However the survey’s aim, she said, was to “help researchers and clinicians better understand people’s emotional and psychological experiences after surgery. This is important because it provides critical information that clinicians need to inform their clinic practices.

“It also means clinicians can make sure people receive the appropriate psychological interventions and that their treatment is tailored to meet people’s emotional needs,” she said.

So what then were the survey’s key findings and what were the main differences between patients with pouches and ileostomists?

“When it came to coping strategies, the only difference that was found was that the pouch group appeared to use problem-focused coping strategies more than the ileostomists,” said Zeina.

“These strategies are used when people try to change the source of their stress and usually take the form of planning or else seeking professional help from doctors or nurses.” She said older participants tended to use these problem-focused strategies more often than younger ones.

Another key factor was the length of time that has passed since the patient has had their surgery. “The further in time from surgery, the more likely participants have time to adjust and cope – and therefore to use problem-focused strategies,” said Zeina.

And what were the recommended types of treatment? “Psychological interventions between the two groups may be different because each group experiences different difficulties, ie individuals with ileostomies may experience short-term complications with their stomas and individuals with ileal pouches may experience long-term complications of the pouch such as pouchitis,” she said. 

“Tailoring psychological interventions may help address people’s specific emotional needs, thus improving their mental wellbeing, whilst also improving access to mental health services,” said Zeina.

The survey is believed to be the first of its kind to examine the differences between a wide range of psychological factors including low mood, anxiety, body image, attention, people’s beliefs, coping, help-seeking and attitudes towards therapy in individuals with ileostomies and ileoanal pouches, said Zeina.

“The results highlighted the importance of understanding people’s attitudes towards mental health services and the need to improve psychological training, healthcare pathways and access to mental health services,” she said.

Patient panel

St Mark’s Hospital has its own Psychological Medicine Unit (PMU) which provides consultation and training to its staff and some specialist input that is mainly for in-patients. Dr Sonya Frearson, consultant clinical psychologist and head of St Mark’s PMU, is currently conducting a needs assessment for St Mark’s Hospital with a view to seeking funding to expand services. 

If the findings of Zeina’s research have prompted you to seek support with ways to improve living with your condition a good first step is to use the following link to refer yourself to your local NHS talking therapies service: https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies/

Or if you are interested in joining a patient panel to help with this treatment then please contact Sonya (using “patient panel” in the subject line) by email to lnwh-tr.psychology.pmu@nhs.net

Zeina Bushnaq: Biography

Zeina Bushnaq is a psychologist and recently completed a doctorate in counselling psychology at the Surrey-based University of Roehampton.

Born and raised in the Middle East, Zeina aims to continue her recent work and research in the IBD community and to help those who face problems or who may be struggling.

She has an MSc degree is social and applied psychology from the University of Kent and a BA in psychology from Canada’s Dalhousie University.


Michelle’s magic formula

RLG communications officer Michelle Martin has her own unique way of dealing with anxiety and stress. We’ll call it PMA –  the positive mental approach

Michelle Martin: positivity

I work for a hospice, so when the UK went into lockdown I was one of the first members of staff to be sent home due to concerns over my health. We entered the lockdown just as I was celebrating one year of living with a pouch and by this point I was really enjoying life without my temporary stoma bag. 

Then I found that after a year of lockdowns I had to regain my confidence in my pouch. I had become so used to being at home near a toilet that I had become nervous of big trips out. 

This situation made me realise two key points:

  • There was nothing wrong with my pouch, it was my own anxiety that was holding me back. It was very easy for me to blame my condition but sometimes I needed to look beyond that. 
  • How important it was to keep active and not retreat to the safety of my own home. It is very easy to stay at home and feel safe but that is not living.

I concluded very quickly that if I stayed at home I would lose touch with my friends, family and the world around me. I also had a spell of Covid and it set me thinking about my mental health. I decided that after being so ill I wasn’t prepared just to sit back. I wanted to live life. 

Living with an autoimmune disease is always challenging but combining that with the worst pandemic in over 100 years just makes things that much more difficult. It is OK to find it stressful but the most important thing is to seek help and support if it is preventing you from living the life you want. You have been through so much you deserve to be happy and to live well.

What a refreshing response, Michelle. It’s an approach that all pouchees – with or without Covid – would do well to follow.

Christopher Browne
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.

Dietary advice for J-Pouch

Dietary advice for J-Pouch
Eating your way to rude, good health

Rest and relaxation are vital aids to recovery after major surgery – but then there’s diet, says Christopher Browne

Glance through any tabloid newspaper or popular weekly magazine and one of the hottest topics you’ll find is dieting. Most of these diets aim to make you feel good about yourself, slimmer and more svelte-looking (both men and women).

And why not indeed! But dieting is not just a way to lose weight. Your diet and what you choose to eat and drink is a major priority when you are recovering from an operation. Your body needs sustenance, essential minerals, salts and vitamins to help you grow stronger and recover your former health.

Some of us were lucky enough to see a recent webcast about healthy eating by Gabriela Poufou, lead IBD dietitian at St Mark’s Hospital – See below for recording.

Gabriela Poufou – Healthy Eating for patients with an internal pouch

[Note: You can download the slides to this webcast at the end of this post]

It was the best guide to diet and recovery I have ever seen  – far more thorough than any newspaper guide. And I’ve got to admit that until recently – apart from taking care to avoid certain foods – I haven’t taken diet as seriously as I should. Neither, I might add, has it seemed to be a top priority in hospitals – apart from St Mark’s and Central Middlesex Hospitals perhaps – GPs’ surgeries and health clinics.

Until now. Pleasingly, this trend is changing. Surgeons, GPs, clinicians, nursing staff, patients and support groups are recognising the importance of diet and healthy eating and as an enthusiastic layman I make no apologies for drawing on the outstanding knowledge and advice Gabriela Poufou gave us in her webcast.

Let’s start with dehydration. If you have a pouch, do you remember how tired and thirsty you felt as the effects of the final closure of your pouch began to wear off. This is because you were dehydrated. The removal of your large bowel meant it could no longer act as a reservoir to reabsorb water and salts. 

This major change in your bodily functions needs time to settle. So one of the best go-to remedies is St Mark’s Hospital’s electrolyte solution – six teaspoonfuls of glucose powder, a teaspoonful of salt and a dessertspoonful of bicarbonate of soda dissolved in a litre of water. Pouchees are advised to drink this solution at regular intervals during the day (There are other variations too which you can find on Google). 

Gabriela Poufou encourages pouchees to continue this rehydration regime for at least two months as your body starts to heal after your final pouch closure.

Here are some of the other keys to post-surgical diet and recovery. [Please watch Gabriela’s video for a much fuller and more detailed version].

For the first few weeks dietitians recommend a soft, low-fibre diet, and, as you start to recover, move on to high protein and energy foods to encourage the wounds from the surgery to heal more quickly, reduce the risk of blockages and help prevent weight loss.

The diet Gabriela Pouchou and specialist dietitians recommend for pouchees after four to six weeks has many of the features of the NHS’s excellent Eatwell guide – Click HERE for NHS Eatwell Guide.

From NHS Eatwell Guide

The foods recommended for pouchees after four to six weeks are: proteins – meat, fish, cheese, eggs, milk yogurt and pulses; carbohydrates including cereals, bread, rice, pasta and potato; healthy fats and calcium-rich dairy products – or lactose-free alternatives – including olive oil, milk puddings, yogurts and petit filou (small yogurts), custard and blancmanges.

After two months you’ll also be able to drink fluids such as water, tea and coffee (in moderation), unsweetened fruit juices and sugar-free squashes. If your loo output is up you may need to continue with an electrolyte mix 30-60 minutes before meals.

During the first few weeks post-surgery (and, in some cases, permanently) pouchees should avoid nuts, seeds, peas, raw vegetables, mushrooms, sweetcorn, celery, dried fruit and coconut. In time you may be able to reintroduce some of these foods in small amounts.

Dietitians advise pouchees to adopt a “little and often” approach to food and to eat slowly and chew your food well. They also recommend you experiment with the size and timing of your meals and you may find some foods suit you better than others. So a bit of trial and error won’t do you any harm!

In the NHS’s Eatwell Guide is a dietary caveat which applies to all of us whether pouchees or otherwise: “Most people in the UK eat and drink too many calories, too much saturated fat, sugar and salt, and not enough fruit, vegetables, oily fish or fibres.” 

Whatever approach you take to your post-surgery diet, if you are in any doubt whatsoever about anything please seek advice from your hospital dietitian. He or she will be only too happy to pass on dietary advice and eating tips.

The Michelle Martin formula

Michelle Martin

Pouchee and RLG committee member Michelle Martin who had her pouch fitted in 2019 says: “I religiously followed what I refer to as the ‘beige diet’ – avoiding anything with too much fibre including too many vegetables and fruit. After that, I gradually reintroduced fruit and veg and very quickly I was able to enjoy a very healthy and varied diet.

“I have made some adaptations to my diet as I find certain foods do not agree with the pouch. I have therefore limited the amount of red meat I eat, I avoid ice cream and despite my love of sugar and chocolate I have to limit these to a treat. However, I frequently give in to my sugar cravings and regularly regret that decision! I also find I have to limit my alcohol intake to one drink per sitting! 

Adds Michelle: “I start my day with porridge and fruit. I have a varied lunch menu including sandwiches, salad, homemade soup, and whenever possible I make my own bread or sourdough. I really enjoy cooking. I make the majority of my dinners from scratch and most of them are based around vegetables, salad and fish. I am still able to enjoy spicy foods and I love curry or chilli dishes. 

“I find the policy of eating a little and often works very well, so I have a reputation for always eating! But I normally only eat small amounts at any one time, and I can’t eat a three-course meal as I get full up very quickly. Eating out can be more challenging as I need to ensure the food is of good quality and that minimal oils and fats are used during the cooking process. I also find that to save wastage I generally order starters for my main course.

Probiotics are another of Michelle’s dietary favourites. “A while ago I had my first bout of pouchitis. It was caught early and is now under control, however I have now introduced probiotics to my diet and take them every morning with homemade natural yoghurt,” she said.

“To keep my pouch healthy, I find I must look after my general health. I know my pouch is at its best when I take care of myself ie eat the right foods, exercise, and get enough sleep. When I start to rush around, get stressed, and do not take the time to think about what I am eating, my pouch and my overall health deteriorates.” 

The vegan approach

Picture of health: Andrew Millis with fellow vegan and running partner Kate Dunbar

The recent rise in the number of people seeking meat-free alternatives has led to the growth of vegetarianism and in some cases veganism in the UK.

The vegan diet is based on plants such as vegetables, grains and fruit and foods made from plants. It also excludes meat, fish, dairy products and eggs.

Veganism is not for everyone but Andrew Millis, our very own marathon man who was RLG vice-chair and is a very active member of the committee, is a passionate advocate. Andrew, who has run many marathons for various causes, says: “Two years into a vegan lifestyle I can report my pouch and I are doing very well indeed.

“I can still run half marathons, the odd marathon and park runs and my pouch is working brilliantly. No pouchitis, no medication whatsoever, and a good plate of veg with rice or potatoes leaves me wondering if I have had any surgery at all.

“I have so much energy for activities and to help focus on my work as well as stamina for the cycling and running I enjoy. I do take a vitamin supplement called Veg 1 which is a chewable tablet and tastes like the Haliborange we used to take as kids. It is available from the Vegan Society.

“I don’t have any colds or such similar elements and if I was missing out on any nutrition, I think I would have known about it after two years. I had a blood test at my local practice, and my vitamin B12 was well up (> 300ug, compared to minimum 200ug).”

Trendy diets that entreat you to slim, impress your colleagues or attract a new partner are one thing. Carefully planned ones that aid recovery and help you regain strength after an operation are another – and a timely aid for anyone with bowel problems or conditions. 

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.

You can download a copy of the slides for the Gabriella Poufou webcast below.

Healthy eating for patients with an internal pouch
Healthy eating for patients with an internal pouch
Download Now!1096 Downloads

Related Posts

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    July 3, 2025
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