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A double tribute to Morag Gaherty

A double tribute to Morag Gaherty

Morag and Brian Gaherty: happy days

The Red Lion Group owes former membership secretary and Roar! editor Morag Gaherty a double debt of gratitude.

Morag who sadly died of cancer earlier this year was one of the pioneers of the group when it was founded in 1994. Working closely with St Mark’s Hospital’s senior pouch nurse specialist Julia Williams, it was Morag’s drive and determination that helped transform RLG from a small patient support group into a national and now international charity.

So you can imagine the committee’s surprise and gratitude when we heard that Morag had left us a £3,000 bequest in her will.

Morag’s husband Brian who had a pouch op after suffering from FAP (familial adenomatous  polyposis) was also an active founder member of the Red Lion Group and served as chair of RLG for three years.

When Brian passed away in 2005 Morag continued to be an active member of the committee, mainly due to her concern that one of her three children might inherit FAP, a genetic condition that can cause bowel cancer, from their father.

Morag was always a vibrant and good-humoured presence at Information Days and RLG committee meetings. Her lively articles and acute observations about pouchcare and modern treatment were also a delight to read in various editions of Roar! magazine.

Morag was a woman of many parts. A trained chartered accountant, she founded and ran a successful online reusable nappy business, appropriately named The Nappy Lady, for almost 10 years – and the company is still trading.

Morag who lived in Bearsted, near Maidstone, Kent, leaves a daughter Lucy, aged 23, and a 21-year-old son Thomas.

Ileo-Anal Pouch Surgery – A Guide for Patients


Ileo-Anal Pouch 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!

Information Day 2022 (postponed)

Information Day 2022 (postponed)

Updated 10 May 2022

I am sorry to write to you with news that we have taken the difficult decision to postpone the Red Lion Group Information Day, which was to have taken place on Saturday 14 May at Central Middlesex Hospital.  

Unfortunately, we did not have enough registered attendees to support the event.  If you are one of the people that had pre-registered for the event, you will have received separate notification and options regarding your donation.

We are all disappointed, but this does offer the opportunity to rearrange the event to later in the year and at a more accessible venue when more people can attend. 

We will be looking to rearrange the event later in the year and possibly also to run some of the presentations as on-line webinars in the meantime.  We will let you know as soon as we have an alternative date and venue.  


The Red Lion Groups first in-person information day since 2019 will be held on Saturday 14th May 2022 at Central Middlesex Hospital (CMH).

Our annual Information Day has always been considered one of the highlights of the Red Lion Group year, but sadly due to COVID, we have not held one since 2019. Now, with restrictions easing, we are delighted to confirm that we will be holding an in person event this year.

Don’t miss this opportunity for a face-to-face meeting with experts in the field of Pouch Surgery and care, as well as meeting Red Lion Group committee members and other pouchees and prospective pouchees.

The past 2 years, RLG have been very fortunate to have had an excellent series of talks from the professionals at St.Mark’s conducted over Zoom. All of these are available on the website. 

Following feedback from previous face-to-face meetings, we are increasing the amount of time available for informal group discussion and Q&A time with the experts. This year, the Information Day will follow a slightly altered format with longer sessions from the professionals allowing for more depth to the session and more time for Q&A. The pouch nurses are also doing an hour long workshop for pouchees which will be followed by our usual workshops when any issues raised can be discussed further.


Location

Avery Jones Lecture theatre at Central Middlesex Hospital


Food & Beverage

Tea and Coffee will be provided, but it is proposed that attendees bring their own lunch. This is to take into account that many attendees have particular dietary requirements and also a precaution in the light of COVID.

For your information, there is a cafe and a WHSmiths located at the main entrance to CMH that sells a selection of drinks and sandwiches.

Cost

Members recommended £5.00 donation to cover costs.
Non-members and Guests recommended £10.00 donation to cover costs.


Registration

Click register button below to register and donate. Places are limited so register soon to guarantee your place.

POSTPONED

You will receive email confirmation of your donation and registration.


Agenda

As usual, we will have some of the leading names in the field of J-Pouch creation and maintenance speaking on relevant subjects as well as time for open discussion and socialising.

See below for current draft agenda (Updated 25 March 2022)

TimeDescription
10:00am-10:30amRegistration & Coffee
10:30am-10:40amDavid Davies – Chairman Red Lion Group

Welcome & Introduction
10:40am-11:25amValerio Celentano – head of the J-pouch one-stop clinic at Chelsea & Westminster Hospital.

Latest surgical techniques in j pouch creation and pouch dysfunction.
11:30am-12:15pmDr. Sonya Freason – Consultant Clinical Psychologist – St. Mark’s Hospital

– Psychology and the Gut
– Mindfulness
12:15pm-12:30pmAnnual General Meeting of Red Lion Group (AGM)
12:30pm-1:30pmLUNCH
1:30pm-2:30pmPouch Nurse Team – St. Mark’s Hospital

Moderated Q&A session on Pouch Care
2:30pm-2:45pmCOFFEE BREAK
2:45pm-3:45pmMale & Female Breakout groups
3:45pm-4:00pmSummary & Close

Getting there

Central Middlesex Hospital is located in Acton.

Central Middlesex Hospital
Acton Lane
Park Royal
London NW10 7NS

For further information see Getting there

Ultra Low Emission Zone (ULEZ): ULEZ was introduced from 25 October 2021. Sterling Way is part of the North Circular Road and is outside of the ULEZ. All exits facing central London, including Bull Lane for North Middlesex University Hospital, are inside the zone. Find out more on the Transport for London website.


Parking

Parking is available at Central Middlesex Hospital. See Parking

We hope to be providing Car Park passes for our Info Day attendees. Further information to be provided.

Download Poster

You can download a printable version of the Information Day poster by clicking on the Download Now button below.

If you are a medic or a pouch nurse for example, you may wish to display this in your department to advertise the event to your patients.

Information Day 2022 Poster
Download Now!

Contacting the Pouch Team at St. Mark’s (and other…

Contacting the St. Mark’s Hospital Pouch Team and other useful contacts

You can contact the Pouch Team at St. Mark’s Hospital by phone on 0208 453 2099
or by email at lnwh-tr.internalpouchcare@nhs.net

If you leave a message, they will do their best to respond to you within 24 hours.

St. Mark’s Hospital Pouch Team (from left) Petya Marinova, Zarah Perry-Woodford, Rali Marinova

You can find further details of the St. Mark’s Hospital Pouch and Stoma nurse team at https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Other contacts at St. Mark’s Hospital.

ST MARK’S SPECIALIST SURGICAL PRACTITIONERS – 
For surgical wound related problems or pre-assessment querie
s

Email: lnwh-tr.stmarkspractitioner@nhs.net 

ST MARK’S ENDOSCOPY – 
For Endoscopy procedure questions or appointments   

Telephone: 0208 235 4130
Email: lnwh-tr.endoscopy@nhs.net   

Website: https://www.stmarkshospital.nhs.uk/services-a-z/wolfson-unit-for-endoscopy/ 

ST MARK’S ADMISSIONS – 
For questions regarding your admission  

Telephone: 0208 235 4055
Email: lnwh-tr.stmadmissions@nhs.net 

ST MARK’S OUTPATIENTS – 
For outpatient appointments questions  

Telephone: 0208 235 4051/0208 963 8853
Email: lnwh-tr.smopd-appointments@nhs.net 

ST MARK’S IBD TEAM – 
For any IBD queries – e.g. IBD medications, Iron Infusion   

Telephone: Tel:0208 453 2368 (Advice line) /Secretary: 020 8235 4026,  Email: lnwh-tr.ibdnurse@nhs.net  

ST MARK’S INTESTINAL FAILURE UNIT – 
For Roundwood/IRU questions  

Telephone: 020 8453 2214
Email: LNWH-tr.IFU@nhs.net 

ST MARK’S NUTRITION NURSES – 
For Roundwood/IRU Nutrition nurses questions 

Telephone: 0208 235 4120
Email: LNWH-tr.St-Marks-Nutrition-Nurses@nhs.net

ST MARK’S BIOFEEDBACK – 
For biofeedback appointments and queries, contact the Biofeedback team

Telephone: 0208 453 2458
Email: 
lnwh-tr.biofeedbackphysiologystmreferrals@nhs.net

ST MARK’S MEDICAL SECRETARIES – 
For Consultant appointments and queries, contact your Medical Consultant secretary 

Dr Donnelly/Dr Gabe/Dr Holman’s secretary – 
Telephone:
 0208 235 4196
Email: dora.michaelides@nhs.net 

Dr Naghibi’s secretary – Telephone: 0208 235 4084  

Dr Amar Sharif/Dr Nikolaos Kamperidis’s secretary – 
Telephone:
 020 8869 3058
Email: Bharti.Huda@nhs.net 

Professor Hart/Dr Akbar’s secretary – 
Telephone:
 020 8869 5808
Email: sokantey@nhs.net  

ST MARK’S SURGICAL SECRETARIES – 

For Consultant appointments and queries, contact your Surgical Consultant secretary 

Miss Vaizey/Professor Faiz/Mr G Thomas’s secretary – 
Telephone:
 0208 235 4020 
Email: susan.russell6@nhs.net  

Mr Warusavitarne/Mr Mehta/Ms Williams’s secretary – 
Telephone:
 0208 235 4168 
Email: meeta.maru@nhs.net  

Ms E Burns/Mr A Antoniou/Mr I Jenkins’s secretary – 
Telephone:
 020 8235 4177 
Email: a.elie@nhs.net  

Mr Tozer/Miss Asha Senapati’s secretary – 
Telephone:
 020 8235 4195 
Email: rose.gonzalez@nhs.net  

Professor Clark’s secretary – 
Telephone: 
020 8235 4018 
Email: anne.wheelhouse@nhs.net

PATIENT ADVICE AND LIAISON SERVICE (PALS)

If you need advice about St. Mark’s services, don’t know where to turn to, or have concerns about your care, the Patient Advice and Liaison Service (PALS) is there to help.

For PALS contact information go to https://www.lnwh.nhs.uk/pals/

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
Download Now!

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

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

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

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!
Information Day Agenda
Download Now!

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.

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