RLG virtual chat forum blows away the Covid gloom

Re–Published on 01 December 2020

Register now for next Pouch Open Forum on 7 December 2020

The latest in the series of Red Lion Group Pouch Support chat forums via the wonders of zoom technology was held on Monday evening, 2 nd November. Attracting some 30 attendees, the evening was another riveting and thoroughly enjoyable opportunity for pouchees and potential pouchees to talk about common problems and challenges and for the more experienced pouchees to share their tips and recommendations to help the less experienced pouchees. The evening was choreographed by Gary Bronziet, our very own IT guru (and Membership Secretary), with Theresa Parr (Minutes Secretary) and Christopher Browne (Editor in Chief of the excellent Roar! publication) chairing the female and male breakout groups respectively.

The small but perfectly formed male group enjoyed an excellent discussion, including a variety of topics such as cuffitis, the diagnosis of crohns versus ulcerative colitis, prostate gland examinations, symptoms of blockage and the influence of adhesions in causing blockages to be more likely to occur, the foods that cause blockages and cures. We welcomed a new pouchee of only 6 weeks, who was keen to hear personal stories and frustrations to reassure themselves that they were doing OK (indeed he is doing very well). The ladies group included two RLG members who were the 8^th and 9^thpeople respectively in the UK to have their pouches created by Sir Alan Parks at St Marks some 43 years ago!! A very warm welcome was extended as you can imagine.

The ladies session covered topics suggested by the attendees, including loperamide usage, diet, skin care, mental health issues, lifting and exercise and blockages. Regarding lifting, one of the attendees, Linda, provided the following information after the event:

Professor Bo Shen recommended in his book “Pouchitis and ileal pouch disorders” that pouchees “…should not lift more than 20-25lbs as well as avoiding any postures during exercise that may assert pressure or torsion at certain sites such as tip of the pouch, the anastomosis site and previous stoma site.”

On the topic of mental health, Linda also commented that her local hospital ran a six-week (one night each week) course on chronic stress management, which was found to be beneficial. Another potential topic for the next forum.

In summing up, Christopher Browne appealed for more personal stories of mental health in pouchees – an opportunity to share your own story (anonymously or not, as you wish) in an article Christopher is writing for the next edition of Roar! If you have a story to tell and would like to submit, then please send to Christopher at cbrowne@brownmedia.co.uk.

Finally, David Davies (RLG Chairman) extended thanks from a PhD student, Zeina Bushnaq, who is conducting a survey of mental health and psychological support for pouchees during their surgical journey. Thanks to a mention during a previous forum and other posts on social media she has managed to recruit 74 pouchees for the survey, an excellent response for which she is very grateful. Thank you to all who took part. We will hope to publish the outcomes in due course on the RLG website.

These RLG monthly chat forums are very well appreciated by all attendees and have been a noteable highlight amidst the general covid gloom. In particular, for pouchees who are based in more remote regions and for whom there isn’t ready access to other pouchees. Hopefully these sessions are helping those people to feel less isolated.

The next Red Lion Group zoom chat will take place on Monday 7 December starting at 8pm. Please click Register Now link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.

David Davies

RLG Chairman

Re–Published on 25 October 2020

Registration is now open for our next Open Zoom Forum on Monday 2 November at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after recent meeting –

“Thank you – I did enjoy the session. I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 2 November at 8:00 pm by clicking 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 2 November 2020).

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 August 2020 – David Davies Chairman Red Lion Group

The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm. Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues. One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.

Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:

How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
- Use of a catheter to achieve complete emptying before bed
- Medications and their use to prevent/reduce nightime BMs. Windeeze was one suggestion to reduce gas in the pouch
- Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time.
Diet and the best diets to use to achieve weight loss along with a healthy pouch
- The benefits of the MacDonalds diet for pouchees!
The St Marks pouch nurses and how to contact them
Probiotics and the high cost of VSL#3. Many people use probiotics and feel they help keep their pouches healthy. Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community. However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website.
It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!

Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons. And thank you to all who took time out to join the event and contribute to the lively discussions.

You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.

Published on 5 July 2020.

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.

News

Why Zoey wears her pouch with pride

Former world champion fitness model Zoey Wright wore a stoma for four years before deciding to have a J-pouch op – and is delighted she went ahead .

My J-pouch is now 15 months old, and with each month that passes it’s becoming stronger and stronger and so is my confidence in my decision to have the two-stage surgery.

I can now go six or more hours without even thinking about the loo and most nights I sleep right though until the morning, which is something I never thought would be possible. As a personal trainer/fitness Instructor I did worry that it would put stress on how I perform in my job, but it’s been no different to when I had my stoma.

I started taking my instructor-led fitness classes around eight weeks post- takedown — under the guidance of my surgeon Mr Denzil May from the Royal Cornwall Hospital where I had my op.

I eased myself back into taking exercise and made sure I focused on engaging my core muscles to prevent any post-surgical complications/injuries and it didn’t take me too long to bounce back into action!

Since my takedown I’ve also managed two holidays, one being only 14 weeks post-closure to Tenerife with a friend which was rather boozy! And my J-pouch survived! Then at the start of this year I had a mini break to Budapest and had no worries then either.

However, before having my large intestine removed travelling was out of the question, the thought of flying would make me incredibly anxious and I would have found eating anywhere very tricky. Now I can enjoy all the foods and drinks I like without a second thought.

Award-winner

Before I had my J-pouch created I was a fitness modelling competitor and, after three long hard years of intense training and dieting with my stoma, I was awarded the highest title recognised by Pure Elite, the fastest-growing fitness federation in Europe!

But I’ve now decided to take a step back from those appearances on the stage with a new mission in mind. I aim to continue to train at a high level but wish to encourage and inspire people from all walks of life to start their journey in health and fitness.

I must say that as a regular gym-goer I have found the lockdown tough. There have been many ups and down with my mental health but I’ve found it a great time to reflect on what I want to do next in my career and to see family and friends who don’t normally exercise now actually MOVING has given me some great ideas to help them continue to exercise once life returns to normal.I’m feeling very grateful for my J-pouch and couldn’t be happier with the progress I’ve made.

This article first appeared in ISSUE 59: Summer 2020 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 a printed copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

Join Now

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

Professor John Nicholls discussing the history and evolution of the Internal Pouch procedure.

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

Zoom into Summer with Zarah Perry-Woodford – Living with a Pouch

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 – the link between the Brain and the Gut

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 – Innovation in Pouch Surgery

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 – CEO of St. Mark’s Hospital Foundation

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!

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 59: Summer 2020 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

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.

News

When did you last suffer a fracture?

Chances are it was some time ago. However, bowel problem sufferers can be more prone to a broken wrist, hip or ankle than others due to a condition known as osteoporosis. Red Lion member Sandy Hyams explains.

Sandy Hyams with her Welsh terrier, Lucky

Seven years ago, I had a nasty fall, breaking and dislocating my shoulder and sustaining nerve damage. I also started suffering from back pain which no amount of painkillers seemed to budge.

To add to my woes, I discovered that I had wedge compression fractures of the spine when the bones become “squashed” due to their reduced strength.

As you can see I’m not one to do things by halves! In fact, I lost count of the number of physiotherapists I visited in a vain attempt to relieve my constant pain. And it was not until a GP suggested I have a DEXA scan* that I discovered osteoporosis had been the culprit all along.

It all started when I tried to reach up into the top of a bedroom wardrobe to lift down a blanket and fell in the process. When I fell over there was a loud crack as I felt my bones go.

As part of the fall-out (excuse the pun!) I lost about three inches in height and suddenly – it all seemed to happen overnight – I found all my trousers were too long and I couldn’t get up to shelves that had been well within my reach before.

Brittle bones

So, what exactly is osteoporosis? It is a brittle bone condition that is usually discovered – as in my case – after a fall. An estimated one in two women and one in five men over 50 suffer such fractures which usually occur in the wrist or hip.

Osteoporosis is often referred to as the “silent epidemic” and UC (ulcerative colitis) and Crohn’s sufferers are particularly prone to it. Among the danger signs for bowel disease sufferers are long-term use of steroids, low body weight, poor food absorption and long periods of immobility.

Other contributory factors are family genes, low calcium intake when young, heavy smoking, excessive drinking and lack of exercise. Low bone density also increases with age and one of the major risk factors for post-menopausal women is a declining level of oestrogen, the hormone which protects by balancing the removal of old and the renewal of new bone cells.

Key remedies

Reassuringly, osteoporosis can be treated and prevented. Three effective ways to help strengthen your bones and general skeleton are to revert to a calcium-rich diet, use weight-bearing exercises at home or at the gym and take Vitamin D supplements and get as much natural sunshine as possible! All these remedies help the body to absorb calcium.

For many years the only treatment available for women with osteoporosis was HRT (Hormone Replacement Therapy). Now, however, there is a range of non-hormonal drugs on the market, including the commonly prescribed bisphosphonates, which are mostly in tablet form and taken either daily, weekly or monthly. There are also intravenous and subcutaneous injections. Like most medicines, they all have possible side-effects. For instance, bisphosphonates can cause digestive irritation, a sore throat or difficulty in swallowing.

For me, one of the drawbacks of regular tablets was needing to take them first thing in the morning on an empty stomach and then remaining upright for 30 minutes afterwards. After speaking to a consultant, I decided to opt for Prolia (known as Denosumab), a twice-yearly jab given at my local GP surgery. A week before each injection I have a blood test to check my calcium and vitamin D levels.

If you think you might be at risk of osteoporosis, it would be a good idea to discuss with your GP whether you need a referral for a DEXA scan. It could certainly save you the pain and misery of broken bones in the future. Although osteoporosis does not make a fracture a certainty, the chances of suffering a broken bone are undoubtedly more likely.

* Most hospitals have this scanner which measures the bone density of the spine, hips and femurs and is a simple and pain-free procedure that uses very low doses of radiation.

For more information on any aspect of osteoporosis, you can phone the Royal Osteoporosis Society (ROS) helpline on 0808 800 0035 or email nurses@theros.org.uk. ROS also has an extensive range of free booklets, leaflets and factsheets about the condition.

Ed: If any RLG members have had similar experiences to Sandy’s, please write to our Letters page (cbrowne@brownemedia.co.uk).

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

The Internal Pouch – it started with this historic…

The Internal Pouch – it started with this historic paper in 1978

What were you doing in 1978? Here are some clues. John Travolta and Olivia Newton John were on our screens with the hit movie Grease.

Disco fever was still on the dance floors and the Bee Gees were still dominating the charts a year after the smash hit Saturday Night Fever movie. Kate Bush was WOWing us with her UNBELIEVABLE Wuthering Heights!

James Callaghan was PM. Anna Ford became the first female news reader. Hitch-hikers Guide to the Galaxy was first broadcast on BBC Radio 4, Nottingham Forest won the Football League First Division title (Managed by Brian Clough), Liverpool retained the European Cup with a 1-0 win over Club Brugge. Freddie Laker was knighted for his services to the aviation industry!

Louise Brown became the world’s first test tube (IVF) baby.

The Government announced plans to replace O level and CSEs.

Viv Anderson the 22 year old Nottingham Forest defender became England’s first black international footballer.

The year ended with the infamous “Winter of Discontent”…..

….But the BIGGEST and MOST IMPORTANT event of the year was the publication in the British Medical Journal of an article by Sir Alan Parks and a young John Nicholls titled “Proctocolectomy without ileostomy for ulcerative colitis“.

The paper described a new procedure which they had pioneered and which we now refer to as an “internal pouch”, “J-Pouch“, “S-Pouch” or “ileal pouch–anal anastomosis (IPAA)” and which has since changed many of our lives. At the time, only a handful of operations had been performed and the paper described the procedure and the outcomes. Now, over 40 years after that publication and many 1000’s of succesful operations later, you have the opportunity to read this historic document below.

Parks Nicholls Paper 1978

Download Now!

At the Red Lion Group Information Day in 2018, Professor John Nicholls gave a talk “Personal reflections on 40 years of the Pouch Operation“. You can view a video recording of the talk on the Resources section of this website. See Personal Reflections on 40 years of the Pouch Operation.

Ed Note: I was fortunate to have had my pouch created by John Nicholls in 1987 at the old St. Mark’s hospital in City Road, and 30+ years later it is still going strong! Thank you Professor Nicholls, from a lot us us!

RLG virtual chat forum blows away the Covid gloom

Register now for next Pouch Open Forum on 7 December 2020

Why Zoey wears her pouch with pride

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

Zoom into Summer series of Pouch webcasts

How Rebecca took those vital first steps to recovery

Coronavirus Update

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

When did you last suffer a fracture?

The Internal Pouch – it started with this historic…

The Internal Pouch – it started with this historic paper in 1978

Privacy | Sitemap

The Red Lion Group is a UK registered charity number 1068124

Register now for next Pouch Open Forum on 7 December 2020

You can book your place using the link below.

Confirmed Speakers

The Internal Pouch – it started with this historic paper in 1978

Cookies