News Archives - J Pouch support charity

Back to peak fitness after J Pouch surgery

Back to peak fitness after J Pouch Surgery

The incorrigible Ben Barbanel has done it again! Regular readers of Roar! will have read about the five-year plan he created to help his recovery from surgery after pre-cancerous cells were found in the lining of his rectum (Roar!’s Summer 2023 issue). For by following a set of cleverly devised rules and changes of medication, the Red Lion Group member and pouchee successfully improved his lifestyle, family life and work as a City banker. Now he has moved several steps further ahead with another, even more rigorous regime which we will call Plan A!
Ben’s aim? To reach peak fitness in all his activities at the grand ‘young’ age of 45. And the father-of-three’s efforts didn’t go unrecognised. He joined a high-performance gym in London’s Mayfair and now features in their eye-catching, high-viz App – aptly (sorry!) named UP (which stands for Ultimate Performance). So how did our intrepid colleague hear about UP? He read about it in a fitness magazine called Men’s Health.

As Ben says: “I often sat in boardroom meetings, glancing around, thinking ‘I’m the only fat one here’. As a senior London banker and a father of three, I felt the weight of my success – literally!

“Something just finally hit me one day when I was reflecting on the trauma of what I had been through – and I thought to myself that being in peak condition can only give me the best chance (but clearly no guarantee) of everything working well going forward, and hopefully living a long and healthy life! “I found that years of living with ulcerative colitis and long stressful workdays had taken a toll on my body, energy and mood,” he says.

However Ben’s efforts on the course meant he not only lost all his excess pounds but also felt happier and fitter. As he told Roar!: “Losing 20kg(!) and regaining my health with UP has completely changed my life. I’m now strong, disciplined and thriving in every area of my life.”

Ben’s personal trainer at UP, adds: “It’s no secret that Ben had complex health issues, but we managed to work through them together. He had a real eagerness to learn and was completely bought into the process at UP. That’s just one of the reasons he achieved such great results.”

If you would like some advice and/or health tips from him, you can contact Ben at bb@barbanel.co.uk

Christopher Browne
RLG Committee member and ROAR! editor

Next week, we will be featuring Ben in a Red Lion Group Zoom webcast where he will be sharing more details about his Pouch journey and Ultimate Performance (UP) fitness routine. This will take place on zoom on Wednesday 30th April at 7:30 pm (BST) and we welcome anyone with an interest in achieving their fitness goals after pouch surgery to share their experiences. For further information and to register, go to pouchsupport.org/events/

A version of this article first appeared in ROAR! issue #68 – Spring 2025. 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.

J-Pouch anal and vaginal fistula study update

Updated 19 March 2025

Further to our last update on this study, we are pleased to report that the team are now ready to progress to the next stage and will be sending the questionairre to the eligible participants. People that have already registered their interest in participating will be contacted directly. If you think you may be eligible and are interested in taking part in this study, please email Dr Easan Anand at lnwh-tr.pavfcoms@nhs.net

You can download further information about the study below.

PAVF-COMS-Patient-information-sheet-March-2025

Download Now!63 Downloads

Updated 30 July 2024

We previously announced a new study into fistulae being undertaken by Dr Easan Anand, a Research Fellow at St Marks Hospital. As a reminder, a fistula is an abnormal connection (or tube) between an organ, vessel, or intestine and another organ, vessel or intestine, or the skin. They are particularly troublesome to treat – the best cure is for the body to close the fistula naturally using scar tissue. But this takes a long time and the “tube” has to be kept open during this time to prevent a closed area developing into an abscess. Hence the use of a Seton drain to help keep the fistula open whilst it is healing.

The goal of the research will be to evaluate the success of treatments for fistulae and identify the optimal method(s) to achieve the best outcomes for patients. Dr Anand will be building on work started by Dr Lillian Reza and Consultant Phil Tozer on this project. One of the fundamental challenges is to develop a questionnaire which patients can complete to evaluate their quality of life (QoL). The tool can then be used to measure the success of treatments in a standard way.

By way of an update, Dr Anand reports that there have been delays in finalising the pouch fistula quality of life scale (abbreviated to PAVFQOL). This scale is essential and will be the first and only scale which is specific to pouch-related fistulae, so it is well worth taking time to ensure it is right. Hence to all those pouchees who volunteered to assist with the research, Dr Anand sends his profuse thanks and asks that you be patient for a few more months whilst the scale is finalised. He will then be rolling out the questionnaire for volunteers to complete.

If you are a pouchee with a diagnosed fistula (either now or in the past) and you would like to join up and take part in this research then please email Dr Lillian Reza at l.reza@nhs.net. All information will be treated in the strictest confidence and the research project has been improved by an independent ethical committee.

Regards

David Davies
RLG Chair

You can view the original article on this study below.

Have you ever been diagnosed with – or treated for – a J pouch-related fistula and would you be interested in taking part in a St. Mark’s Hospital based study?

If so, would you like to help Dr Easan Anand with a research study he is leading into outcome measures for fistula treatment? Outcome measures include such things as pain, quality of life and incontinence and it is important for these to be standardised so researchers around the globe can work with the same outcomes.

Easan is working at St Marks Hospital under the supervision of Phil Tozer and Ailsa Hart, who have both given webinars for RLG in the past

Who are we looking for?

You can take part in this study if you have ever been diagnosed with or treated for a fistula related to pouch surgery and you are over the age of 18 years.

You can email Easan on lnwh-tr.pavfcoms@nhs.net if you have any further questions.

Introductory discussion meeting on Teams

Easan will be holding an introductory study management group meeting on 18 March 2024 at 7:00 – 7:30 pm on Teams. This will be purely an introductory discussion and is a fantastic opportunity to find out more about the study if you are considering taking part.

If you would like to attend, please email Easan on lnwh-tr.pavfcoms@nhs.net to request the Teams meeting link.

Wear your Red Lion Group T-Shirt with Pride!

High quality Red Lion Group T-shirts with the new logo are now available for purchase at a cost of £10 each plus £2.50 post and package. White and with the red and grey logo displayed prominently on the chest, they are a striking addition to any summer wardrobe. These are very good quality T-shirts and you won’t be disappointed!

A guide to sizes is provided below:

Size	S	M	L	XL	XXL
Chest (inches)	34/36	38/40	42/44	46/48	50/52

Please contact David at info@pouchsupport.org with your size(s) and delivery instructions and see below for payment instructions .

Please send your payment by scanning QR code below or click here. Cost is £10.00 each plus £2.50 for post and packing. All proceeds will help to bolster the RLG finances for 2025.

When you go to the payment website you will see the following page.

Enter the applicable amount as advised in the AMOUNT box to make a one off donation.

Please do NOT tick the Gift Aid box.

Membership Secretary Gary Bronziet in Mauritius 2024

Please send us pictures of yourself wearing a Red Lion Group tee shirt with pride and we will add to gallery!

Join St. Mark’s Study: Help Shape a Sexual Function…

Join St. Mark’s Study: Help Shape a Sexual Function Questionnaire

A research team at the St. Mark’s Hospital Academic institute is looking for volunteers to help refine a sexual function questionnaire which will be used to support patients undergoing non-cancer colorectal surgery.

Fellow pouchees and past pouchees,

Those clever people at the St Marks Academic Institute have asked for our help in seeking 20 – 25 volunteers who can help them with some crucial research. Please consider taking part in this study and email Shivani at LNWH-tr.sexprom@nhs.net if you would like to take part.

The sex-PROM study will develop a sexual function questionnaire which will be used to support patients undergoing non-cancer colorectal surgery. This includes people like us who have undergone or are undergoing ileo-anal pouch formation.

The team has now developed the initial questionnaire. The next phase is to test the questionnaire to ensure it is relevant to patients, easy to understand and effectively supports patients after surgery. Participation in this phase will involve a short, 30 minute interview via Microsoft Teams/Zoom at a convenient time for you. During the interview, you will be asked to fill out the draft questionnaire and provide your feedback on the layout, wording and response options to ensure they are relevant and easy to understand. That’s it! – a 30-minute zoom call at a convenient time during which you will be asked to review a form and give your feedback!

The study is open to men and women and you do not need to have a sexual dysfunction to take part. All responses will be anonymised and treated in strictest confidence

Thank you for your consideration, on behalf of Shivani and the team at the St Marks Academic Institute.

David Davies
RLG Chairman

J Pouch Support facebook group hits 1700 members

The J-pouch support (UK specific) facebook group is a super platform for the sharing of questions, comments, information, tips and advice on pouches. It has been in existence for 10 years or so and has never been so popular. We posted a story of the 1,500^th member, Amanda Nash, not so long ago. Well, the membership has just recently passed 1,700, reflecting the value of this j pouch support facebook group to pouchees and their loved ones.

The 1,700^th member is James Miller and here is his story:

James Miller – J Pouch Support Facebook group 1,700th member

I’m a specialist in data and analytics and currently leading a fast-growing management consultancy. It is a busy and full-on job, growing and running the business.
I stress this, as I was so sick before I had my ileo-anal pouch, I wasn’t sure I’d ever work again. Thankfully, my pouch has enabled me to live as normal a life as possible, and I’ve been determined to live it on my own terms.
I live in Buckinghamshire with a very understanding wife, two teenagers (less understanding) and a dog (who keeps me fit). Hobbies wise, I love exercise, a bit of cycling, gym stuff, and time in the garden.
I was originally diagnosed with Ulcerative Colitis in 2010, and none of the standard medications worked, apart from steroids. After 4 years on and off steroids, and essentially in a constant state of flaring, I was very ill, tired, and at my wits end.
In 2014 I elected to have pouch surgery after deciding against biologic medication. I was taken through the various risks and considerations by Janindra Warusavitarne at St. Marks Hospital and saw that I was in expert hands. St. Mark’s has been a feature of my life for 15 years, and the team there continues to provide amazing support. I’m happy to travel the 40 odd miles to my appointments, despite the London traffic!
I chose a pouch over a stoma as I have always been sporty and felt that with my hands full with two small children (at the time), I didn’t fancy having an external bag.
My surgery was completed over the course of three ‘sessions’ and full pouch connection was made in December 2014.
I’ve lived with the pouch for 10 years now, and for most of that time things have been great. They are certainly better than before the surgery and I’m much fitter overall now than I was in my mid-thirties.
I have had a couple of cases of pouchitis, which were well managed by antibiotics. My pouch function has changed, and it is slightly less effective, but still very manageable. I’ve also discovered that psyllium husk works wonders for my pouch function.
When I had my pouch I was told that like a baby it can be irritable and prefers routine, which was excellent advice.
Over the years I’ve helped a few people considering surgery answer their questions about the j pouch and tried to show them that it can actually be a very liberating surgery.
I’ve joined the group as I thought it was a good idea to finally join the wider pouch community after a decade of living with one.

Thank you so much for taking the time to pen your story James and very best wishes for continuing good pouch health.

David Davies
RLG Chairman and Facebook group administrator

The J Pouch Support (UK specific) facebook group is a private group that welcomes members from all over the world. If you are not already a member you can submit a join request by clicking here.

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

If you suffer with Crohns disease or Ulcerative Colitis you may be eligible to take part in this survey being conducted by a St. Mark’s Hospital Research Fellow. See below for further details and follow the link or scan the QR code if you feel you are eligible and would like to complete the questionnaire.

RLG monthly J Pouch forums on zoom

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

The first RLG pouchsupport zoom forum of the year took place on Tuesday 7th January with a group of pouchees dialling in from the comfort of their own homes and confounding the artic weather. The big benefit of the zoom forums is that you don’t have to travel to have an informative, supportive and relaxing pouch chat with fellow pouchees. You can make a cup of tea before, during and after or indeed crack open a tinny or a bottle of Pinot if the mood takes you (other wines are available!)

The RLG zoom forum series has been running for more than 4 years, since July 2020 when the RLG Committee set these forums up to maintain contact and communication amongst pouchees during the first Covid lockdown. The sessions are moderated by myself David Davies and Gary Bronziet – two RLG stalwarts. They make sure everyone who wants to speak gets a chance to contribute, they make sure wherever possible that all topics are discussed and they check that any new attendees are aware of the few practicalities. There are no minutes or recordings, so “what goes on in the zoom stays in the zoom” and this reassures people to disclose freely in the group. An important principle when the topics include pooh, medications and bowels (or lack of them) that would probably get an 18 rating at the cinema. The January meeting covered a wide range of topics, usually supported with all-important personal experiences and perspectives which help us to know we are not alone. Topics included :-

Blockages (causes, symptoms, treatments and the need to go to hospital),
Comparisons with life with a stoma
New stoma technology
Pouchitis (treatments)
Probiotics VSL#3 and Vivomixx (with the revelation that one attendee still gets VSL#3 on prescription!)
Haemorroids (occurrence, causes and treatments in pouchees),
Use of the Aquaflush system and comparison with a catheter alone
Use of Fibogel and Metamucil thickeners,
Gastrograpin
Bimuno prebiotic
Anusol, Germolene and Ostique stoma bags…..

In addition we talked about availability of pouch nurse specialist expertise and resourcing updates from St Marks hospital. There is no pre-set agenda, and topics to be discussed are agreed on the night.
It sounds pretty dry stuff, but humour is an important component, whether it is personal recollections of pouch disasters, confusion about best how to use a catheter on a moving train, offering used medina catheters to other pouchees (well washed apparently), how to hide a catheter on your person when attending a wedding or how to describe your operation to a blind date. This is a terrific group for some pouch-related humour!

Such is the vibrancy of the discussion – these meetings usually overrun. So it was that the meeting ended a few minutes past 9pm, but with almost everyone able to stay to the end.

This series has been running for over 4 years now; in fact the 5^th anniversary will be July 2025. It is a friendly and welcoming forum for pouchees and potential pouchees to enjoy a supportive and informal chat about pouch stuff. Thank you to everyone who dialled in and joined in with the discussions on 7^th January.

The next RLG zoom forum will take place on Wednesday 5 February starting at 7.30pm. Registration is necessary before the event to receive the dial in details, but registration does not commit you to attending – we know things crop up!

Registration is via the events page on the RLG website pouchsupport.org/events/

Looking forward to seeing familiar friends and new faces at the February session!

Best wishes
David Davies
RLG Chairman

Regular attendees will recall that we usually schedule our forums on the first Monday of the month. Please note a change to this policy. As we have been made aware, there are people that would love to attend our forums but have a clash with other regular commitments they have on Mondays. So going forward, we are going to vary the day and hope this will allow more people to attend. Hence, the next forum on Wednesday 5th February. 7:30 pm as usual!

Seasons Greeting from RLG (and a turkey recipe!)

On behalf of the Red Lion Group trustees, I would like to wish all of our members and followers a peaceful and joyful christmas, and most importantly – a healthy and happy 2025!

In the spirit of xmas, I would like to share with you below a turkey recipe provided by commitee member and trustee Theresa Parr.

Soused turkey recipe

Forget all the bother with brining, etc. Far too much fuss! I first started using a basic version of this recipe 40 years ago, since then been modified several times. Definitely tried and tested so you will have beautiful, moist, tender and tasty turkey every time.

Chestnut Stuffing

2 packs of streaky bacon

1 onion

Liver from the turkey chopped small

Knob of butter

200g vacpacked chestnuts broken up

1 Bramley apple chopped small

4 tablespoons chopped parsley

1 dessert spoon chopped thyme

1/4 teaspoon ground mace or grated nutmeg

1 large sausage skinned (Sainsbury’s do really good high meat content sausages, the caramelised onion ones work well)

Salt and pepper

Fry bacon, onion and liver for 10 mins in the butter.

Tip into bowl and mix in all the other ingredients.

Soused Turkey

Loosen the neck end of the turkey and stuff with the chestnut stuffing mixture. Secure with a skewer.

Pop an apple or onion into the main cavity. This keeps it moist.

Slather the turkey with butter, about 500g. I soften the butter in the microwave and then brush it on for a good, even covering.

Cover the turkey in back bacon. (I use lots as it comes out soft and delicious; very good on Boxing Day). Worth using tooth picks to secure as they tend to slide off all the butter!

Place a few large carrots, large tomato, a stick of celery and a halved onion in the bottom of the roasting tin. ( I chuck the celery afterwards but roast the carrots with your potatoes and pop the onions out of their skin as an accompaniments)

Place turkey on top of the veg.

Then pour in half a bottle of wine into the pan, red or white, your choice but use good quality wine as it flavours the turkey and is the base for your gravy. ( If you don’t drink wine, then you can use a good stock)

Cover with a double layer of foil but wrapped loosely to allow it to steam.

It’s cooked when the juices from the thigh run pink.

Gravy

Remove everything from the roasting tin but leaving just a couple of tablespoons of liquid. Serve the excess liquid.

Whisk in 2 tablespoons of flour and warm through over a low heat until combined.

Gradually whisk the reserved liquid back in and whisk until slightly thickened.

Add salt and pepper to taste.

If you don’t have enough liquid then you can make it up with stock.

Many thanks to Good Housekeeping and Delia for the original recipe inspiration.

Theresa Parr
RLG Commitee member and trustee

Support St. Mark’s this festive Season

St Mark’s Hospital Foundation is dedicated to funding groundbreaking research at St Mark’s Hospital and supporting the training and education of its medical professionals. By donating today, you’ll help St Mark’s continue its vital work; caring with guts for the thousands of individuals affected by complex bowel diseases.
And there’s more—thanks to the generosity of our matched funders, your donation could be doubled, making an even greater impact!

To read more about the work of the St Mark’s Foundation and to donate, click on the button below.

Donate here to support St. Mark’s, who have been Caring with Guts since 1835

Back to peak fitness after J Pouch surgery

Back to peak fitness after J Pouch Surgery

J-Pouch anal and vaginal fistula study update

J-Pouch anal and vaginal fistula study update

Who are we looking for?

Introductory discussion meeting on Teams

Wear your Red Lion Group T-Shirt with Pride!

Wear your Red Lion Group T-Shirt with Pride!

Top 10 most viewed J Pouch posts on pouchsupport.org

Top 10 most viewed J Pouch posts on pouchsupport.org

Join St. Mark’s Study: Help Shape a Sexual Function…

Join St. Mark’s Study: Help Shape a Sexual Function Questionnaire

J Pouch Support facebook group hits 1700 members

J Pouch Support facebook group hits 1700 members

Would you like to help with research to improve…

Would you like to help with research to improve patient care?

RLG monthly J Pouch forums on zoom

RLG monthly J Pouch forums on zoom

Seasons Greeting from RLG (and a turkey recipe!)

Seasons Greeting from RLG (and a turkey recipe!)

Soused turkey recipe

Support St. Mark’s this festive Season

Support St. Mark’s this festive Season

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