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Events

Ileo-anal Surgery – A Guide for Patients


Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Zarah Perry-Woodford

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

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 participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

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

Register your place soon as places are limited!

Events

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

Now the sun is shining, clocks going forward this weekend and just a little over 3 months until the walk, it’s time to dust off your walking shows, start your training and register your intention to take part in this fun event.

Stop Press! Griffin Institute will be offering a prize of a £75.00 Waitrose/ John Lewis gift voucher to a lucky winner who signs up before the end of the Easter holidays – Tuesday 19 April. (Winner to be drawn from a hat, to include people that have already registered).


Red Lion Group is joining one of the fundraising events of the year – the London Bridges Walk!

The event – on Sunday, 26 June 2022 – is over 13 miles – or if you prefer 6.5 miles – and covers 10 of London’s iconic Thames bridges from Putney Bridge to Tower Bridge.

Everyone is welcome to take part – families, children and pets – and if London is too far out of your way we are also running a virtual event which you can complete wherever you are based.

The walk is being organised by the Griffin Institute – a charity linked to St Mark’s Hospital – and the money raised will help fund Red Lion Groups services and St. Mark’s Hospital research projects.

You can REGISTER at the London Bridges walk homepage HERE and download the event e-flyer below.

Look forward to seeing you there!

London Bridges Walk 2022
London Bridges Walk 2022
Download Now!716 Downloads
Events

J Pouch Forum update

J Pouch Forum Update

The first RLG pouch forum of the year took place on Monday 7th February and what a welcome return!  

Some 30 or so pouchees dialled in from the comfort of their own homes to chat informally about pouch-related stuff, to share experiences and suggest solutions and to realise that we are all part of a special community. Brilliantly chaired by softly spoken Chris Browne, who gently lights the blue touch paper and then sits back and lets us chatter away, whilst ensuring that everyone gets the chance to speak and be heard.  The audience was mixed, with new and old pouchees, regular attendees and newcomers.  But, as always, the warmth and sense of community was as strong as ever.  

Topics covered in a thoroughly riveting 98 minutes included nutrition, overnight frequency and seepage, use and availability of catheters, vitamin B12 and D deficiency, the challenge of educating GPs about pouches, pelvic floor exercises, peristalsis, full emptying, absorbent pads, loperamide, local pouchee meetings and many other topics. Gary Bronziet was pressing all the right buttons once again, despite being in hospital recovering from pouch-related surgery (adhesiolysis).  And RLG Trustee Theresa Parr was on hand to add reassuring and learned comments, as ever. 

The time flew; Chris drew the evening to a close at 9.08pm but one felt it could have gone on for an hour longer.  A terrific evening for anyone with pouch-related questions or concerns, or those just wanting to be reminded they are part of this special pouch community.  As one newcomer commented “we all look pretty normal!”

The next RLG forum will take place on Monday 7th March and thereafter typically on the first Monday of every month.  Please register in advance at  https://pouchsupport.org/events/ to get your log in details and to keep track of other upcoming events.

David Davies 

RLG Chairman

News

Stoma or J-Pouch? A life changing decision

Stoma or J-Pouch? A life changing decision.

” So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?” Joe Wright on J-Pouch Support Facebook group.

Many of us are faced with this life changing decision – permanent ileostomy (stoma) or J-Pouch. Of course, not everyone even has the privilege of having this choice. Depending on circumstances, the decision may have already been made for us or not available. Prior to the invention of the Ileal Pouch Anal Anastomosis (IPAA) commonly referred to as a J-Pouch there was no alternative to a permanent stoma. When the J-Pouch procedure was invented, it was an appropriate option, most commonly for sufferers of UC and more rarely FAP. Sadly, not an option for Crohns disease or Cancer in the rectum. If you are in a situation where you have an acute condition, requiring emergency intervention, and you are treated at a location which is not a specialist centre experienced in the J-pouch procedure, they may perform a proctocolectomy removing the rectal stump. The rectal stump and anus must be left in situ for the creation of a J-pouch. It is not recommended to perform the J-pouch creation on an acutely ill patient. The ideal situation would be a three-stage operation – Colectomy with ileostomy, J-Pouch creation with loop ileostomy and finally the closure of the loop ileostomy and J-Pouch functioning, sometimes known as the “take-down”.

Diagram  Description automatically generated
Diagram showing 2-stage and 3-stage IPAA (Ileal Pouch Anal Anastomosis)

Although it is the case that some people have the J-Pouch creation in a single stage this is rare. More likely this would be for a patient with FAP rather than suffering with UC. Most UC patients will find themselves with a temporary stoma for several months or longer.  These patients may then find themselves adjusting to life with the stoma and asking themselves the question – is J-Pouch creation the way to go or am I better off as I am?

There has been a recent thread on the J-Pouch Support (UK Specific) Facebook Group on this subject and I present below some of the questions and answers.

From Joe Wright. So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?”

From Stephen S. I feel your pain, I also need to make the exact same decision soon. When I first got the ileostomy, I was 100% sure I wanted the J pouch. These days I’m 75/25 in favour of keeping the ileostomy (like you, I don’t have many issues with it, the bag lasts a few days, I go swimming, camping, walks, days out, holidays etc and it has little to no impact on my life – I also love spicy food, which I feel wouldn’t be an option with a JP), I was initially on-board with the idea of ‘if it goes wrong, just go back to a stoma’, but my surgeon said to me that it’s not a great path to go down, they’re big surgeries, you will lose some small bowel (which will make output looser, absorb even less B12 etc etc) and the stoma will never be as good as it is now, so it’s certainly an option, but he said if I’m thinking like that, then I should keep the illy. But as crunch time approaches, it’s really hard to make the call, knowing that there’s never another option. The hands we’re dealt in life, eh?

From David Davies (Red Lion Group Chair). I enjoyed reading your very well-balanced post. I’m guessing you haven’t had the surgery to create the pouch yet. This is a big op and certainly not a stroll in the park so my feeling is you must be motivated by the prospect of poohing out of your bum (instead of into a bag) to go through the op plus the subsequent (and much smaller) stoma closure op. Plus the possibility that your quality of life might be adversely affected if the pouch doesn’t work out well. Your acceptance of the stoma is impressive, and I wonder if you have a driving desire to have the pouch? Let’s face it, we have all had the crucial surgery that saved our lives, whether the initial surgery was necessitated by UC, CA or FAP (or anything else). The subsequent choice of stoma vs pouch is more of a lifestyle decision for most, albeit with implications for mental health and well-being. And you raise a very good point about it not being so straightforward to go back to a stoma if the pouch doesn’t work. But one thing I would counter is the spicy food thing. Many pouchees eat spicy foods without problem – me included. So, I would caution about having that as a reason not to go for a pouch. Another consideration is employment – some self-employed are put off by the more extensive surgical journey for a pouch vs a stoma and the potential loss of income. I had a driving, overwhelming desire to get a pouch, which meant I never even considered for one second the prospect of sticking with a stoma (which I also got on ok with). I think that helped with my acceptance of the consequences in terms of operations and recovery and the various challenges of living with a pouch. Best wishes on your journey, whatever your decision, and I hope the comments of this excellent group are helpful.

From Gary Bronziet (Red Lion Group Membership Secretary). My pouch journey followed a common path. Starting with mild symptoms, I was originally diagnosed with proctitis (which effects just the rectum). This was way back in 1979 when I was living and working in Toronto. I returned to the UK in1980 and over the next few years the symptoms got more serious developing into full blown chronic ulcerative colitis (UC). I was fortunate to be referred to John Nicholls and there began a life-long “relationship”. I recall that at our first meeting, he drew me a picture of the pouch procedure with the reassurance that most cases of UC are resolved without the need for surgery. Between 1980 and 1984, I had several in-patient stays in St. Mark’s (the original building in City Road, Islington). I was jointly under the care of John Nicholls, and Professor Leonard-Jones, on the medical side. There was certainly no pressure on me to have surgery, and the available medical options were tried (which at the time were salazopyrin and steroids). Of course, anyone that has suffered with UC will testify – the effects of the disease were debilitating and affecting all aspects of my life, including extreme weight loss and necessary blood transfusions. I was however a reluctant surgical patient and tried to soldier on. I remember on one of my admissions to St. Mark’s, another patient who had begun his pouch journey advising me to have the op. I recall his words that “I obviously hadn’t suffered enough yet”! He was right, and eventually I reached the decision that my quality of life was so poor that I really had no option but to agree to the surgery and in 1984 my own pouch journey began. The plan was for a 3-stage procedure, which commenced in the autumn of 1984, when I was admitted to the London Clinic where John Nicholls performed my total colectomy and ileostomy. Goodbye to ropey colon!

Following my surgery, I was soon back at work and enjoying life for the first time in years. I can’t say that I “liked having a stoma” but it certainly wasn’t as bad as I had imagined, and the effect on my quality of life was transformational following the years of chronic UC. The plan had been to have the second stage operation 6-months later which would have been the summer of 1985. However, at this stage I was beginning to have the doubts that were expressed at the start of this article. The pouch creation is major surgery, and it’s a tough decision to volunteer for what is essentially “elective surgery” at a time when you are feeling healthy. The stoma did not stop me doing anything. I travelled, played squash, swam etc. It was a long time ago, but I recall my biggest doubt with having a pouch was “urgency”.  The last thing anyone wants who has been in this position is to return to a situation where they are scared to be more than 10ft from a toilet. (I also had my first son, Daniel, born in May 1985).  When I checked into St. Mark’s in the summer of 1985, I expressed these “doubts” to John Nicholls. A joint decision was made that there was no urgency in making the decision. It was suggested that it would be safe to delay for up to three years – at which point a decision would have to be made to either proceed with the pouch surgery or further surgery to remove the rectal stump that had been left for the pouch creation.  So, life continued with the stoma for a further 3 years.

A person and person in a pool  Description automatically generated with medium confidence
Gary & young Daniel in Crete (1987) Swimming no obstacle to stoma

Deciding to proceed with the pouch surgery was an extremely tough decision. I had become comfortable with the stoma, was enjoying life, getting on with my career and of course enjoying family life with my young son. The thought of undergoing more major surgery was daunting, but what swung it for me was the fact that, if I did not have the pouch, I would still require major surgery to remove the rectal stump.  {That was the recommended course of action back them, but it may be that the situation has changed or doesn’t apply in all cases}.

For better or for worse I decided to go with the pouch, and this was scheduled for November 1987. I recall I was due to speak at a conference in Montreux in October 1987 and John Nicholls mentioning that “it was one of his favourite places” and I should attend the conference before my surgery. I recall gazing out on the beautiful lake and wondering if I had made the right decision. 

I am pleased to say that the surgery went smoothly, and I now have a collector’s item of a pouch – a “hand sewn” W Pouch courtesy of John Nicholls. I’m not sure if he autographed it.

I have never regretted the decision. I would say that I had at least 25 years of perfect pouch function. Able to eat anything, no frequency or urgency issues, never getting up at night. In fact, my pouch was such a “non-issue” that I have travelled the world without even feeling it necessary to disclose my pouch to my travel insurance. {I’m not sure I would recommend that depending on your circumstances}.

A group of men standing in front of a jeep  Description automatically generated with medium confidence
2015 Celebrating my 60th birthday with some off-road driving & Golf at Gleneagles. Daniel (left) then 30, David (middle) then 24. My Pouch, then 28!

In more recent years, I have had some issues. Emptying problems and more recently adhesions/blockages relating to scar tissue from the original surgery. The emptying problems were addressed by using a medina catheter. For the blockages, I am currently awaiting surgery to hopefully rectify this. 


If you would like to add your story to this BLOG and/or possible publication in ROAR! please send to Christopher Browne (ROAR! editor) at cbrowne@brownemedia.co.uk

News

J-Pouch Fistula Study

J-Pouch Fistula Study

Do you have a pouch anal or vaginal fistula? If you are over 18 years of age AND have ever had a pouch fistula – We would like to hear from you!

For further information go to: https://delphimanager.liv.ac.uk/pavfcos
or email us at lnwh-tr.pavfcos@nhs.ne

Events

Stoma and Pouch Care – Virtual information day

Join the St. Mark’s Hospital Stoma & Pouch Nurses for a Virtual information day on Thursday 25th November 2021 (09:00-15:00)

This virtual event was held on ZOOM and featured a number of guest speakers on a variety of Pouch and Stoma related subjects and provided the opportunity to put questions directly to the nursing team.

Recordings of the Sessions are now available. See Below.


St. Mark’s Stoma & Pouch Nurse team

RECORDING DETAILS

Date: Thursday, 25th November 2021
Title: Stoma & Pouch Care Information day
Time: 09:00-15:00 (London time)

To view recordings of the sessions click HERE


Information Day Agenda

See below to download a printable copy of the agenda.

For further information about St. Mark’s Hospital Stoma & Pouch Care services go to https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/


Download the Information Day Poster and Agenda below

Stoma & Pouch Care Information Day Poster
Download Now!732 Downloads
Information Day Agenda
Download Now!691 Downloads
Events

The London Bridges Walk 2022

The London Bridges Walk 2022

We are delighted to have been invited by the Griffin Instiutute to participate in their annual London Bridges Walk fund-raising event. Save the Date – 26th June 2022. For further information and how to register, see below.

To pre-register and guarantee your place, please send a brief email to the Griffin Institute Fundraising Events Manager, Ian Tate – i.tate@griffininstitute.org.uk.

News

Smiley Film Awards – RLG needs your vote!

Smiley Film Awards – RLG needs your vote!

The Red Lion Group is very proud to announce that our recent film “J-Pouch Surgery – Recovery time, risks, and benefits,” featuring Mr Toby Hammond, has been nominated in the Smiley Film Awards.

The 5th Charity Film Awards is the world’s largest campaign for cause-based films and, the Smiley Movement is a platform for people driving positive change.

To make the final we need the public vote! Voting is easy simply visit https://smileymovement.org/single-award/286

This link takes you straight to our film and then all you need to do is click vote.

This is a fantastic platform to raise awareness of our condition and, the more votes we receive, the more chance we have of making the finals!

Together we can raise awareness and help support others living with a Pouch. So please help spread the word – share the link on your social media – tell all your friends and family and most importantly please vote!

To find out more about the Smiley Awards click HERE.

News

The COVID crisis has accelerated our movement to modern…

The COVID crisis has accelerated our movement to modern virtual technology.

One of the casualties of the COVID crisis has been our annual information day normally hosted at St. Mark’s Hospital which previously had been the highlight of the Red Lion Group calendar. In 2020, when it became obvious that an in-person event would not be possible, it occurred to me that this would be a perfect opportunity to utilise the Zoom technology to replace the information day with a series of “Virtual events” – and hence our Zoom into Summer Series was launched for the summer of 2020. In fact, this technology was not that new. I had been using equivalent platforms such as WebEx and GoToMeeting for many years in my professional capacity – but suddenly this virtual meeting technology had become mainstream, and “zooming” and dare I say, “You’re on MUTE!” also became part of our everyday vocabulary!

In fact, using this virtual platform made the logistics of hosting this event much simpler. No longer did we have to try to coordinate the availability of the potential speakers around one particular Saturday. Separate events could be scheduled at the convenience of each speaker. The Ladies and Gentleman’s “workshops” that previously ended the day at the Information Day were replaced with regular monthly Open Zoom Forums. However, one of the biggest advantages of the “Virtual format” has been the accessibility of the events irrespective of geographic location. We have virtual attendees from all around the UK including Wales, Scotland and Ireland, from Europe (Notably France and Portugal) and we also have some regular attendees from the USA, East and West Coast.

Although it is our intention to host an in-person Information Day at the earliest opportunity (hopefully in 2022) it is also intended that we will continue with our virtual events for the foreseeable future.

The Red Lion Group Website has been significantly improved together with a new easy to remember URL

You have probably noticed that our website was significantly re-vamped a couple of years ago. Thanks to D&AC who put together the new framework. This has been a major leap forward for us and raised our profile tremendously. The new site at pouchsupport.org is at the very top of the Google search results when people are searching for pouch support related information. The available resources are continually expanding making our site the “go to” place for pouch related information and the number of visitors continues to increase – not just from the UK but from around the globe.

Another step was to link our website with the most active Facebook discussion group J-Pouch Support (UK Specific). This group has over 1,000 members and is very active on a daily basis. Visitors can read the activity on this group directly from the FORUM section of our website. See https://pouchsupport.org/forum . (As it is a closed group, to contribute to the group – you need to submit a join request on Facebook).

The membership process has been streamlined and our membership continues to grow

As part of the modernisation, we have also streamlined the membership application process. Visitors can now submit a membership application directly from the website. (See pouchsupport.org/join). We have also registered with a charitable payment portal called CAF (Charity Aid Foundation) which simplifies the fee payment and donation process.

Can’t Wait / Medic Alert

We recently also introduced a unqiue “Can’t Wait” membership card – the only such card designed specifically for pouchees. One side is a traditional “Can’t Wait to use a Loo” message in various languages, and the reverse side is a Medic Alert which has an explanation of our condition together with a URL and a QR code that links directly to a more detailed medic alert page on our website (see pouchsupport.org/medic )

Our membership numbers are on the rise, and it is likely that this is very much related to a combination of the steps we have taken as outlined above – specifically the website, the zoom meetings, and the membership card. As a result, in 2021 to date, we added 88 new members!

Whereas the Red Lion Group was originally founded as a St. Mark’s centric support group, you can see from the picture below the geographic spread of our current membership.

Red Lion Group membership by region

We appreciate your continued support and remind you that the Red Lion Group is run entirely by volunteers. Membership fees cover our expenses (which are minimal) and surplus funds are donated to the St. Mark’s Hospital Foundation. We recently made a donation of £5,000 to the Foundation. (See https://pouchsupport.org/rlg-donates-5000-for-pouch-related-research/).

Best wishes & Seasons Greetings from

Gary Bronziet
Membership Secretary and IT
membership@pouchsupport.org

Events

Summary of guest speakers – J-Pouch webcasts 2021

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)


Following out 2020 highly successful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (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, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be 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!

Keep an eye out for updates, including additional speakers and dates and times.

We had the pleasure of listening to the following speakers in 2021. We look forward to running a similar series next year. Join us in 2022!


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

Subject: Through the keyhole – latest developments in pouch surgery
Recorded: Wednesday, 5 May 2021. 07:30 pm (London time)


Prof. R. J. Nicholls, Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London

Subject: Evolution of Modern Surgery
Recorded: Wednesday, 19 May at 7.30 pm (London time).


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

Subject: Keep taking the tablets: a guide to the best drugs and when to take them.
Recorded: Wednesday, 26 May at 7.30 pm (London time).


Professor Ailsa Hart, Consultant Gastroenterologist, Sub-Dean (St Mark’s Academic Institute)

Subject: Professor Hart will be speaking on the subject “Managing a pouch behaving badly”

Recorded: Monday 14, June 2021 at 07:30 PM (London time)


Jason Bacon, CEO of St. Mark’s Hospital Foundation

Subject: St Mark’s Hospital’s clinical services at Northwick Park, Central Middlesex Hospital and Beyond

Recorded: Monday, 28 June 2021 at 7.30 pm (London time)

To Register for events go to https://pouchsupport.org/events



Gabriela Poufou, Dietician St. Mark’s Hospital

Subject: Healthy eating for Patients with an Internal Pouch

Recorded: Wednesday 4 August 2021 at 7:30 pm (London Time)

To Register for events go to https://pouchsupport.org/events


Petya Marinova, Pouch nurse specialist, St. Mark’s Hospital

Subject: St Mark’s Hospital: Life after the Pandemic

Recorded: Wednesday 22 September 2021 at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


Ellie Bradshaw, formerly gastrointestinal specialist nurse at St Mark’s Hospital, now at London’s Queen Charlotte Hospital.

Subject: Crouch for your pouch – key emptying tips

Recorded: Wednesday 13th October at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Subject: Fistulas associated with pouches.

Recorded: Wednesday 8th December at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


For a review of last years Zoom into Summer series webcasts , click HERE.

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