Stories - Pouch support charity

Help doctoral student with research project

I am passing on the chance for you to get involved in some research being conducted by a doctoral student, Zeina Bushnaq, at the University of Roehampton. Zeina is asking people with ileostomies or pouches for their experiences and thoughts regarding mental health services.

The survey takes about 30 minutes to complete, the project has been approved by the University ethics committee and your data will be confidential and anonymised.

There is no payment, but I hope a few of you will have the time and motivation to complete the survey. Zeina has prepared a flyer for more information and your participation is completely optional!

If you would like to take part in this study, for more information please click here

Thanks on behalf of Zeina and her colleagues. And don’t forget to mention where you heard of the research.

Thanks

David Davies

Chaiman – Red Lion Group

Events

First Red Lion Group Zoom Forum “a great success”!

The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions. So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past. The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members. The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics. The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.

Representative screen image of Zoom meeting

The event was a resounding success. Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.

Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.

We pouchees are united by a common journey and shared experiences which are unique to our circumstance. There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs. The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.

The event was a great success with attendees unanimously voting for another such event in one month time. The next forum will take place during the evening of Monday 3^rd August, starting at 8pm. To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.

Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event.

David Davies

Chairman – Red Lion Group

We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.

Stories

Video: Considering a J-Pouch? What you need to know.

Mr Toby Hammond talks about J-Pouch Surgery – Recovery Time, Risks and Benefits

New committee member Michelle Martin has made the first of a series of videos about the pouch featuring her own surgeon Mr Toby Hammond as the presenter.

The idea for the series was prompted by Michelle’s experiences of ulcerative colitis and what exactly made her decide to go ahead with J-pouch surgery.

Says Michelle: “In 2017 I had an emergency operation to remove my colon due to undiagnosed ulcerated colitis. It was a total shock. Suddenly I was living with a stoma and everything in my life had changed.

“Initially, my main focus was to have my stoma reversed, however over time I got used to my stoma, I felt well for the first time in years and I didn’t want any more operations.”

However, she wanted to find out more about the second option – having an ileo-anal pouch fitted. “I spent a lot of time talking through my options with my consultant Mr Hammond [Toby Hammond, consultant general and colorectal surgeon at Broomfield Hospital, Essex], but I found that away from the hospital there was limited information that would help me make an informed decision.

“I eventually decided to go ahead with the operation and just over a year later I couldn’t be happier,” says Michelle.

As she points out: “I know deciding to go ahead with the operation is a difficult decision, and I wanted to help others in a similar situation. I approached Mr Hammond and he was more than happy to support the project, and I hope this will be the first of many videos that will help people living with a J-pouch.”

You can view the video on YouTube below.

The Red Lion Group would like to thank Mr Toby Hammond and Graham Fisher, cameraman and editor, for both giving up their time for free and helping to produce this informative film.

If you would like to become a member of the Red Lion Group, you can sign up by clicking on the button below.

Join Now

Events

Zoom into Summer series of Pouch webcasts

Updated Sunday 21 June 2020

Prof. Nicholls – Evolution of Pouch Surgery. Click picture to see Video

This week’s Red Lion Group Zoom meeting featured the eminent surgeon, Professor John Nicholls, who spoke about the history and evolution of the different surgical procedures for the treatment of bowel diseases, including the pouch procedure of which he was, with Sir Alan Parks, the first surgeon to describe and carry out the procedure. This was a fascinating talk, especially as so many attending the talk have Professor Nicholls to thank for their own pouch! You can view the recording of the talk by clicking on the picture above.

This was the last session in the Zoom into Summer schedule to feature a guest speaker, however as mentioned at the meeting by Red Lion Group chairman, David Davies, we intend to hold further Zoom meetings in the format of an informal “coffee morning” chat, like the open forums we usually hold at the end of our annual Information Days. The first one is provisionally scheduled for Thursday 2 July at 10:30 am. Further details to follow!

Thanks to everyone that has supported our Zoom events and sent such positive feedback, and special thanks to all of our speakers. We have had over 100 people that have taken part, and look forward to seeing you on our first coffee morning meeting!

Updated Sunday 14 June 2020

Zarah Perry-Woodford addressing Red Lion Group meeting. Click picture to watch video..

This week 48 of us had the pleasure of listening to Zarah Perry-Woodford, followed by a vibrant question and answer session covering a variety of Pouch related issues. If you missed the session, you can see a replay by clicking on the picture of Zarah above.

Next Thursday you will have the opportunity of hearing from Prof. John Nicholls who, with Sir Alan Parks more than 40 years ago, pioneered the procedure we know now as the Internal Pouch or IPAA. We look forward to hearing his personal reflection on 40 years of the pouch procedure on Thursday 18 June at 10:30 am.

Please don’t forget to register to receive the Zoom meeting Link. You can register by tapping the button below. Note that this zoom meeting will be immediately followed by the AGM (Annual General Meeting) of the Red Lion Group, and Red Lion Group members are invited/encouraged to remain on the Zoom for the AGM. We promise it will be short and sweet and further information about the AGM will be sent out seperately to members.

Note the main presentation from Prof. Nicholls is open to all, not just RLG members!

Updated Tuesday 9 June 2020

Links to the recordings from the first three Zoom into Summer sessions are now available. Click on the pictures below to view the recordings of Dr. Yoram Inspector, Janindra Warusavitarne and Jason Bacon respectively.

Don’t forget to register for this week’s Zoom featuring Zarah Perry-Woodford if you have not already done so!

Updated Sunday 7 June 2020

Dr. Yoram Inspector addressing Red Lion Group meeting. Click picture to Watch Video.

Another “lockdown ” week gone by, and another fascinating Red Lion Group Zoom meeting, this week featuring Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Yoram shared his unique perspective on the link between the brain and the gut, with a good measure of Greek Classics and Mythology thrown in! Make sure to look out for the recording if you missed it.

It’s not too late to register for the Zoom meeting this coming Thursday 11 June (10:30 – 11:30) where this weeks guest speaker will be Zarah Perry-Woodford. Zarah has a CV that reads like a medical Who’s Who. A pioneer in patient care and support, Zarah is the Consultant Nurse at St Mark’s Hospital, the UK’s centre of excellence for pouch and stoma care. Zarah speaks and presents at national and international conferences, writes for the leading medical and nursing journals and in 2016 wrote the definitive “Ileo-Anal Pouch Surgery for Ulcerative Colitis – a Guide for Patients” – a work that has become the go-to bible for those who have had or are about to have pouch surgery. She was also a very active medical liaison officer with the Red Lion Group.

After spending several years developing and expanding the ileo-anal pouch service at St Mark’s Hospital, Zarah is now a key member of the team working on the NHS-sponsored “Ostomate Project”, which aims to expand and develop stomacare services and products throughout the UK.

You must register to receive the Zoom meeting Invitation.

Scroll down for further information about upcoming meetings.

Updated Sunday 31 May 2020

Janindra Warusavitarne addresses Red Lion Group meeting. Click picture to watch Video.

Thursday we had another enjoyable and enlightening Zoom meeting with over 40 attendees, watching and listening to Janindra Warusavitarne. His talk was followed by a lively Q&A session. Janindra was also complimented on having the best book shelf seen on Zoom so far!

If you attended you will also have heard about the further exciting speakers lined up for future sessions. On Thursday June 11, we have the pleasure of hearing from Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital. Many of you will know Zarah from personal experience, and as you will know, Zarah literally wrote the book on “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“. You can see further details about Zarah and her book in a previous post here.

Hot off the press news is that our speaker on Thursday 18 June will be none other than Professor John Nicholls. As many of you will know, Prof. Nicholls (with Sir Alan Parks) pioneered the surgical procedure we know as the Internal Pouch or IPAA. (see recent post on their historical paper describing the procedure here ).

And don’t forget to register to attend this weeks ZOOM (Thursday 4 June) where the speaker will be Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology. His last talk at a Red Lion Group Information day, was rated the most popular by attendees with his fascinating insights into the link between the brain and the gut.

For further information, and to register please scroll down.

Updated Saturday 23 May 2020

Jason Bacon opening our Zoom Series on Thursday 21 May 2020. Click to watch video.

This past Thursday, we held the first of our series of Zoom into Summer webinars and a good time was had by all. Jason Bacon, CEO of St. Mark’s Hospital Foundation gave a very interesting talk on how St. Mark’s Hospital has adapted in the light of the COVID-19 virus. A recording of the talk will soon be available on line.

Further to last weeks update, I can now confirm that the talk by Dr. Yoram Inspector will be on Thursday, 4 June (10:30 – 11:30). Anyone that has attended one of his talks will know that he is one of our most popular Information Day presenters. Dr. Inspector is a Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology.

It’s not too late to register for the Zoom meeting this coming Thursday 28 May (10:30 – 11:30) where this weeks guest speaker will be Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital. Janindra has a particular interest in minimally invasive surgical techniques and is at the forefront of developments in Pouch Surgery.

Details of how to register are below. So come on fellow pouchees and guests! Bring your morning cuppa, and join us for elevenses with an interesting talk with time for Q&A and discussion.

We are delighted to announce that we will be hosting a series of Pouch related webinars (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike. As you may know, regrettably we had to postpone the RLG annual Information Day usually held at St. Mark’s Hospital, but here is a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

The following online meetings are currently scheduled (more to follow) :-

Thursday 21 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Jason Bacon (CEO of St. Mark’s Hospital Foundation)

Thursday 28 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Thursday 4 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital.

Thursday 11 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital

Prof. Nicholls receiving gift from Chairman David Davies after speaking at Information Day 2017

Thursday 18 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Prof. John Nicholls – The Rear Admiral (retired)

If you would like to attend any session, please register your name and email address by clicking the button below. Please indicate the session(s) you would like to attend. You will be sent joining instructions in due course.

Zoom is FREE and extremely easy to use, and you can join with the press of a button from a desktop computer, laptop, tablet or smart phone. There are no costs to you in joining the webinar.

We look forward to hearing from you soon and receiving your registrations!

Events

Notification of AGM

Dear RLG member,

We are living in strange times and I speak for all the Trustees in hoping that you and your loved ones have been keeping well during the COVID-19 crisis.

The crisis has meant the cancellation of our annual Information Day, which would have taken place in April and would have included the Annual General Meeting (AGM). In place of the Information Day, we have been running a series of webcasts using the Zoom facility allowing members to dial into the sessions from the comfort of their own homes without the risks of social interaction.

Under these exceptional circumstances, the RLG Committee has therefore decided to exercise best endeavours and to host an Extraordinary General Meeting (EGM) this coming Thursday 18th June at 11:45, immediately following the latest “Zoom into Summer” event (a webinar with Professor John Nicholls) which is scheduled for 10:30-11:30 am. We are aware that we will not be able to achieve the usual notice period for members but feel this is the best chance to achieve quorum so that the voting is validated. To register to attend the webinar with Prof. John Nicholls and the EGM, please click the button below.

To download EGM agenda, click here.

There will be an EGM report published on the website within one week for those of you who are not able to attend in person, with opportunities to ask questions of the Committee via the website (as always). If you wish to table a question or comment in advance of the AGM, then please use the info@pouchsupport.org email address or indeed contact me directly on my personal email (dbd60@hotmail.com).

Yours sincerely

David Davies
(RLG Chairman)

News

How Rebecca took those vital first steps to recovery

RLG member Rebecca Berzins almost became an also-ran when pouch surgery threatened her passion for running. Then sheer determination took over.

I’ve always been a keen runner, enjoying the buzz and camaraderie of several fun runs, 5ks and a half marathon or two – even during the four years I had a stoma.

However I faced a much bigger snag in 2016 when I had a pouch operation. Suddenly I began to struggle to get back into my familiar running routine again, sometimes finding the timing of my runs tricky and unpredictable.

I decided that with some good planning there was no reason why I couldn’t take it up again. So at the start of 2019 I signed up for the Vitality 10k – a 10-kilometre run through the streets of London. I decided that I’d be damned if my pouch was going to rob me of my passion for running!

I duly printed off a training plan and to the cheers of my four-year-old daughter, Cleo, shouting “Run faster Mummy”, I set off running again. Despite not being altogether in the best of shape physically I knew that, on the days that I did feel up to it, stepping out for a run would make me feel like me again. Running always makes me feel fit, healthy and alive!

As race day approached friends and family started asking me how they could sponsor me so I decided to use the opportunity to raise funds for the Red Lion Group. Having sat in on the AGM at the annual Information Day in April 2019, I knew how valuable the funds would be.

Sticking to my training plan was tough at times as on bad pouch days I couldn’t run as planned. Yet I tried not to get despondent and kept in mind that I was taking part in a race that was important to me – not simply bettering past racing times.

During my training I ran first thing in the morning before I ate anything as I find that is the easiest approach. But on race day my start time wasn’t until 10.45am so I knew I would need some fuel. I had a light breakfast first thing and left myself plenty of time to empty my pouch and make several toilet trips before the race started (although race day nerves meant I’ve always done that anyway so I can’t really blame my pouch!).

Being a little out of practice and somewhat short of training meant my knees were struggling by the halfway point, but I was pleased not to have to make any toilet stops during the race, which took me a little over an hour to complete.

It was wonderful to be back doing what I love again and I am delighted that I raised £605 for the Red Lion Group.

**Finishing touch: Rebecca Berzins with her Vitality 10k medal**

Ed: Congratulations Rebecca! We very much appreciate your fundraising efforts

This article first appeared in ISSUE 58: Christmas 2019 edition of ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed Copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

Join Now

News

Coronavirus Update

Many of you have been contacting us over the past few weeks about the coronavirus outbreak expressing understandable concerns about its effects on your health, work, finances and general well-being.

It has also meant we have had to postpone the Red Lion Group’s Annual Information Day and AGM, which was due to take place on 25 April, in compliance with government restrictions. We recognize the value of the Information Day to our members and are constantly reviewing the possibilities of a re-arranged event later in the year. We will keep you posted on this.

Covid-19 has posed many questions and concerns for us all about both the present and the future. In particular the “at risk” status of pouchees and potential pouchees who are on various medications.

There is very clear and concise advice on this topic on the websites of the Ileostomy and Internal Pouch Association (IA) ( Click here ) and Crohn’s and Colitis UK ( Click here ) and we suggest you refer to these in the first instance

If you still have issues or concerns then please don’t hesitate to contact us at info@pouchsupport.org.

The RLG Committee

Events

Information Day Postponement

Dear Members and Guests,

The Red Lion Group Committee has reviewed the latest updates regarding the emerging Coronavirus situation across the UK and implications for the safe conduct of the Internal Pouch Annual Information Day scheduled to take place at St. Mark’s Hospital on Saturday 25^th April. As the outbreak is still gathering pace in this country, it is not possible to accurately forecast what the coronavirus status will be in 6-7 weeks’ time. Nevertheless, the Committee has taken the decision to postpone the Information Day until later in the year, when hopefully the situation will be under greater control. This is especially pertinent to pouchees and potential pouchees whose immune systems may be compromised and reflects our determination to look after the safety and wellbeing of our members and their guests at all times.

We realise this will be disappointing to delegates and appreciate your understanding of the need for this action. We will be monitoring the situation closely and will be announcing the alternative date for the Information Day as soon as possible via the usual channels (our web site, emails, posters, letters and through social media).

Thank you for your patience and continuing support. We remain open online at all times on our web site at pouchsupport.org or by email at info@pouchsupport.org and of course we wish you all well.

The RLG Committee

Events

Ileo-Anal Pouch Surgery – A Guide for Patients

Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients

Stop Press – Zarah Perry-Woodford will be speaking at the Red Lion Group Internal Pouch Information day at St. Mark’s hospital on Saturday, 25th April 2020.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be speaking on the subject “Post-operative and long-term care of pouch patients” at its Internal Pouch Information Day to be hosted at St. Mark’s Hospital on Saturday, 25th April 2020.

You can find out more about the Information Day and reserve your place by clicking here.

Events

Information Day 2020 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2020, which will take place on Saturday 25th April at St Mark’s Hospital, Harrow. The Red Lion Group Information Day is one of the most informative events for patients, prospective patients, friends family and health care professionals with an interest in Pouch Surgery.

(The information day is open to ALL, not just patients of St. Mark’s Hospital)

You will have the opportunity to hear from some of the leading professionals in the field of Pouch Surgery practise and research and interact with fellow pouchees, prospective pouchees and health care professionals. You can see highlights and download presentations from last years (2019) Information day here.

Spaces are limited and you are recommended to register your intention to attend as soon as possible. Attendance fee (which includes refreshments and lunch) is £10.00 for non-members and £8.00 for members.

You can book your place using the link below.

You will be sent regular updates on the agenda as they become available and payment instructions in due course.

Become a member of the Red Lion Group and attend the Information day at the discounted rate and other benefits.

Join Now

Confirmed Speakers

Dr. Yoram Inspector

We are delighted to confirm that Dr Yoram Inspector will be speaking again following his hugely popular presentation at the Information Day in 2018. He will be speaking on “The psychology of bowel (pouch) surgery”.

Dr Yoram Inspector M.D is a consultant Psychiatrist and a Psychotherapist and the Head of the Psychological Medicine Unit of St Mark’s Hospital which provides psychological treatment and support for people who cope with various gastrointestinal diseases and disorders.

Zarah Perry-Woodford
Many of you will be acquainted with Zarah Perry Woodford who will be speaking on the subject “Post-operative and long-term care of pouch patients“. Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches. She is also the author of the acclaimed book “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“.

Zoey Wright
We are also pleased to announce that we will have a Zoey Wright as a speaker. Zoey is a fitness model and media celebrity who will be celebrating one year to the day of her J-Pouch connection. She will be discussing her J-Pouch journey and training with a J-Pouch.

You can view Zoey’s website by clicking here or on the picture below.

Lucia Braz (Research Fellow at St. Mark’s Academic Institute)
Lucia Braz is a Registered Dietitian, trained at the University of Porto where she received a BSc Honours Degree in Nutrition and Dietetics and became a member of the Federation of Nutrition Therapy Practitioners (FNTP) and British Dietetic Association (BDA) in the UK.
In 2017, she stepped out to undertake a PhD programme under supervision of Professor Ailsa Hart and Professor Gary Frost splitting her time between St Mark’s Hospital and Imperial College London. Her main research interest is the role of diet and Short-chain fatty acids in Inflammatory Bowel Disease (IBD) and Pouchitis.

FURTHER SPEAKERS TO BE CONFIRMED.

If you would like make a donation to the Red Lion Group please see our JustGiving link below.

Help doctoral student with research project

First Red Lion Group Zoom Forum “a great success”!

Video: Considering a J-Pouch? What you need to know.

Zoom into Summer series of Pouch webcasts

Notification of AGM

How Rebecca took those vital first steps to recovery

Coronavirus Update

Information Day Postponement

Ileo-Anal Pouch Surgery – A Guide for Patients

Information Day 2020 – book your place now!

You can book your place using the link below.

Confirmed Speakers

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The Red Lion Group is a UK registered charity number 1068124

You can book your place using the link below.

Confirmed Speakers

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