Stories - Page 13 of 15 - J Pouch support charity

Everything you wanted to know about your internal pouch….

Everything you wanted to know about your internal pouch but were afraid to ask

Are you aware of the wealth of information available on the Red Lion Group website about Pouch history and living with a Pouch?

Over the years, we have posted personal stories from pouch owners and video recordings from the experts and pioneers in pouch surgery from St. Mark’s Hospital and academic institute.

You can find this information on our Stories page. Or look at the Resources page and browse recordings of Information Days presentations.

Some highlights from previous Information Days:-

Personal reflections on 40 Years of Pouch Surgery by Professor R. J (John) Nicholls
Modern developments in Pouch Surgery by Janindra Warusavitarne
Fertility, fecundity and pregnancy with a pouch by Sam Evans – Pouch Nurse Specialist
Pouch emptying and Biofeedback by Ellie Bradshaw – Lead Nurse, Biofeedback Dept.

So, whether you have a j-pouch, s-pouch, w-pouch or considering pouch surgery, why not attend this year’s Information day and hear expert advice first hand on pouch related topics and meet other pouch owners and pre-pouch patients. This year we will be commemorating the 25th anniversary of the Red Lion group.

The 25th anniversary Information day will take place on Saturday 27^thApril 2019 at
St. Mark’s Hospital, Watford Road, Harrow, Middlesex HA1 3UJ.
See Getting here

Here is the Information day agenda (updated 20.03.2019)

TIME	PRESENTATION
10:00-10:30	Registration with tea/coffee and biscuits
10:30-10:50	Welcome and AGM
10:50-11:00	Personal reflections on the Red Lion group 25 years on Dr. Martin Peters, Pouchee and first Chairman of the RLG
11:00-11:10	My parallel journeys – pouch and RLG Tim Rogers, Founder RLG member, first editor of ROAR! And still on the committee after all these years!
11:10-11:50	Modern developments in Pouch Surgery Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital
11:50-12:20	Pelvic floor perfection and the importance of proper emptying Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital
12:20-13:30	Lunch – a selection of sandwiches and cakes
13:30-14:00	Pharmacy Advice for Pouchees Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist
14:00-14:30	Diet and your pouch Gabriela Poufou, Dietician, St. Mark’s Hospital
14:30-14:45	Tea and coffee break
14:45-15:55	Personal pouch journeys and workshops 1) Female pouch issues Theresa Parr 2) Male pouch issues Gary Bronziet 3) Pouch family and friends (TBC)
15:55-16:00	Evaluation and close

You can download the agenda below.

Information Day Agenda 2019

Download Now!1337 Downloads

If you would like to attend please download the registration form below. Note that the cost is only £8.00 for members and member’s guests and £10.00 for non-members (cost includes lunch and refreshments). Please complete the form and remit payment as soon as possible to guarantee your place as spaces are limited. If you have pre-registered, please send form and remit payment by 1 April to guarantee your place.

Information Day Registration 2019

Download Now!1640 Downloads

If you are not already a member, why not join now and take advantage of the discounted rate and other member benefits. You can join here.

Join Now

We look forward to seeing you there. Come celebrate our 25th anniversary with us!

Stories

25th anniversary special – from the first chairman of…

The first chair of the Red Lion Group reflects on the heady days that marked the launch of the Red Lion Group on 10 April 1994

I remember well my time in St Mark’s Hospital in City Road. I was very ill with a severe case of ulcerative colitis that had not responded to medication. I was admitted to the very old and rather shabby St Mark’s in London’s City Road in a very weak state to be treated with intravenous steroids and methotrexate. After some weeks I was advised to have surgery and offered a pouch operation by my surgeon Mr Peter Hawley.

I was warned of all the possible complications but I was so ill that I didn’t take any time to decide on surgery as soon as possible. All went well and, by day two, I was feeling so much better but very weak. Over the next two years I was readmitted to St Mark’s on numerous occasions because of obstructions due to adhesions requiring a number of major surgeries to combat the problem. This all happened over 30 years ago and now seems just like a bad dream.

Twenty-five years ago I was contacted by the St Mark’s stoma nurse specialist Celia Myers to see if I was interested in discussing ways in which we could help pouch patients and those considering pouch surgery. The group met in the then new St Mark’s Hospital in Watford Road, Harrow.

Celia’s name should go down in history as she was the inspiration that caused the group to come into existence. Tim Rogers, Roar’s designer, was there too. The names of the other founder-members are recorded elsewhere.

We were told that we needed a chairman to run the meetings and perform certain tasks and duties. No one seemed keen to take on this job so I volunteered.

I was chairman of a number of charity groups and medical conference organisers so I thought that one more job could be fitted in somehow. We decided to call the new charity The Red Lion Group and chose the cute little lion as our logo as we felt that it was non-threatening to new members.

After about two years the group had an established membership, a newsletter run by the same team as it is now, and we were a registered charity. At this point I felt that it was time for me to pass on the chair to new blood.

I have always maintained an interest in the group and receive Roar! regularly. I believe the group does a wonderful job because I have always maintained that no matter how experienced a pouch nurse or consultant may be only someone with a pouch can really understand what it feels like to have a pouch with all its peculiarities of sound and motion!

I know that when I was faced with the choice I would have loved to have someone to talk to who had been there, done it and got the T-shirt.

I am very lucky to have a pouch which behaves itself almost all the time. I have lived in Spain permanently for 20 years now and can eat anything and what’s more do. I have been admitted to hospital once here for an obstruction and was delighted to find that the surgeon in charge had been trained at St Mark’s by Peter Hawley and knew all about pouches.

I am looking forward with great anticipation to the April 2019 Information Day and the 25^thanniversary of The Red Lion Group. I hope to see lots of you there and swap pouch stories.

News

Ancient ROAR archives discovered!

The eagled eyed may have noticed that there was a gap in the ROAR archives, specifically issues 5- 12 inclusive. Thanks to intrepid explorer Peter Zammit, these ancient ROAR archives have been found and uploaded to the website. So we now have the complete set of ROAR! online, going all the way back to Issue 1: Summer 1994.

There are some fascinating and informative articles in these old editions and I highly recommend that you make some time to re-visit them, or maybe see them for the first time. The ROAR archives are accessible to members and non-members alike.

Events

Celebrate the Red Lion Group Silver Jubilee at 2019…

2019 is the SILVER JUBILEE of the Red Lion Group; providing advice and guidance for pouch patients, their friends and family for a quarter of a century.

The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994. Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.

Book your place by clicking the button below.

Events

Information Day 2019 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2019, which will take place on Saturday 27 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.

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 view videos from previous information days here on the Red Lion Group website.

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 by subscribing to the Information Day mailing list by clicking the link below.

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

Confirmed Speakers

The Information Day on 27 April 2019 will celebrate the Silver Jubilee with an address by Dr Martin Peters, who was the first RLG Chairman way back in 1994. Martin will be reflecting on RLG then and now and on his own reflections about living with a pouch for the last 25 years.

We are delighted to confirm that Elissa Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy at St Marks Hospital, will be speaking about the importance of efficient pouch emptying, the mechanics of pouch emptying and how you can empty your pouch more effectively.

Biofeedback therapy is an effective treatment for bowel dysfunction. The service at the Sir Alan Parks Physiology and Neuromodulation Unit has been successful in providing biofeedback therapy for 30 years, where treatments have extended and evolved to help both the physical and psychological needs of pouch patients. It is particularly useful for pouch patients, who may experience a variety of difficult symptoms including increased bowel frequency, evacuatory dysfunction and incontinence.

You can read more about Bio Feedback research at St Marks Hospital here.

News

Christmas 2018 edition of ROAR! now available

The Red Lion Group publishes an informative magazine called ROAR! two or three times a year and the latest edition has just been published.

Members should have received this (Issue 56: Christmas 2018) in the post.

It is also available to download from the website.

Only members have access to the latest edition on the website. Please contact us to request the password if you don’t have it.

Non members are welcome to view the archive editions on the website going all the way back to 1994.

Visit the Red Lion Group website at www.pouchsupport.org.

News

Decision-Making in IBD Dysplasia Questionnaire

A research team of doctors at St Mark’s Hospital want to speak to people who have had a colectomy and ileoanal pouch due to their inflammatory bowel disease. They particularly want to speak to people who chose to have this surgery due to the finding of changes in the colon lining (called dysplasia). They want to learn how to better communicate and support patients through the process of deciding whether or not to have a colectomy and pouch for this condition. They can only do this if they hear directly from people who have experienced this and can tell them their stories and what worked or didn’t when speaking to their doctors. If you are interested in taking part then please do read the information via this weblink.

or you can email misha.kabir1@nhs.net for more information.

Stories

World champion fitness model swaps stoma-bag for J-pouch

Body image is the most compelling reason why most of us opt to have an ileal pouch. So someone who not only chooses to have an ileostomy but is brave enough to flaunt her stoma-bag in front of hundreds of people as a world champion bodybuilder is truly unique.

After several painful spells of ulcerative colitis, Falmouth-based Zoey Wright had an ileostomy and then took up bodybuilding to improve her fitness and to help regain her strength. Then in November 2017 the 26-year-old was crowned Overall World Champion Bodybuilder in the Pro Elite bodybuilding championships in the UK.

“I chose to step on stage, despite my stoma-bag, to prove to myself and others that the impossible is possible and ever since it’s been my mission to face new challenges and defeat the odds,” said Zoey who since winning her title has become the face of USN, the leading sports nutrition brand.

“When I saw my surgeon after the ileostomy he asked if I wanted to have a J-pouch fitted and I said I am fine – I’m actually enjoying my life with a stoma-bag and it has caused me no issues whatsoever,” she said.

However after winning her world title, Zoey started having problems in her pelvic area “so I spoke to my surgeon and said I had changed my mind about having J-pouch surgery,” she said.

The Cornish athlete is now due to have the first stage of her two-stage J-pouch operation at the Royal Cornwall Hospital, Truro, in the next few months.

Events

Kangaroo Club – Information Day

The Kangaroo Club – a pouch support group based in Oxford – is holding its next annual Information Day on Saturday 6^th October 2018.

Cost: Free of charge

Time: 10:00 a.m. – 4:00 p.m.

Venue: John Radcliffe Hospital, Oxford

The aim of the Kangaroo Club Information Days is to give a chance to meet other people who have had colorectal surgery or who are eligible for such surgery. As well as time being given for informal discussion with other attendees, there is a full programme of more formal sessions led by medical staff from the Oxford Radcliffe Hospitals NHS Trust .

The Information Day on 6^th October 2018 will include a full programme of sessions covering:

Colorectal surgery as a specialty
Pouch surgery: developments and variations
What is normal?
About Occtopus and The Kingston Trust
Round table discussions – as suggested by pouch owners and for their supporters
Questions and answers with the Colorectal Nursing team

For more information and to register to attend please click here

We look forward to seeing you there.

News

Ileoanal Pouch Report 2017

Revolutionary pouch report puts St Mark’s Hospital top of the league

Here are some key findings about pouches and pouchcare from the frontline – i.e the UK’s and Europe’s leading surgeons and specialist bowel centres.

(You can download the full report from the image on the left).

St Mark’s Hospital carries out more pouch operations than any other hospital in the UK and Europe – with Universitair Ziekenhuis Leuven in Brussels second, Edinburgh’s Western General Hospital third and the Churchill Hospital, Oxford fourth.

These are the findings of a recent survey, the Ileoanal Pouch Report 2017, published in July 2017 by the Association of Coloprotoctology of Great Britain and Ireland (ACPGBI).

The report covers the outcomes of more than 5,000 patients including 500 under-20s who have had pouch operations under the care of approximately 150 surgeons.

Among the report’s most significant findings are:

Someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD) – every 30 minutes;
At least 300,000 people in the UK have IBD in one form or another;
About one-in-four people with UC will need an operation at some time during their lives, with pouch surgery being one of the most common procedures;
The most popular type of pouch is the J-pouch, while the once-popular S-pouch and W-pouch have largely been phased out;
Approximately one-third of today’s pouch operations are carried out laparoscopically – i.e with keyhole surgery;
Most patients spend 10 days in hospital when they have a pouch operation. However, a surprisingly high 27.4% of patients need to be re-admitted within 30 days of their operation:
Approximately 80% of pouch operations are successful and restore patients to a high quality of life;
St Mark’s Hospital has carried out 159 operations in the past five years.

The report which was first published in 2012 makes the following key conclusions:

“There is clearly a compelling argument for centralisation of pouch surgery. The procedure is performed infrequently within a repertoire of surgical options available to patients having had a colectomy or needing proctocolectomy.”

“Intimate knowledge of all surgical options, considered experience in guiding patients to the option that may best suit them, and back-up from the specialised multi-disciplinary team is paramount in providing the best possible service for patients.”

“While there are undoubtedly some centres that are currently offering pouch surgery at low volume with good outcomes, this report indicates that they are probably the exception rather than the norm. And the future is likely to take a more pragmatic view when it comes to ensuring good outcomes and training the next generation of specialist surgeons.”

Like the first Ileoanal Pouch Report in 2012, the 2017 version is based on the latest data from the SWORD HES database and the Pouch Registry, a leading database set up by St Mark’s Hospital’s Emeritus Consultant Surgeon and Red Lion Patron Professor John Nicholls in 2015. The data is sourced from voluntary information supplied by half of the UK’s and Europe’s specialist bowel surgeons. surgeons.

You can download the full report from the Resource section of the Red Lion Group Web site.

Click here to Download.

This article appeared in ROAR! Issue 54: Christmas 2017.

Everything you wanted to know about your internal pouch….

Everything you wanted to know about your internal pouch but were afraid to ask

25th anniversary special – from the first chairman of…

Ancient ROAR archives discovered!

Ancient ROAR archives discovered!

Celebrate the Red Lion Group Silver Jubilee at 2019…

Information Day 2019 – book your place now!

You can book your place by subscribing to the Information Day mailing list by clicking the link below.

Christmas 2018 edition of ROAR! now available

Decision-Making in IBD Dysplasia Questionnaire

World champion fitness model swaps stoma-bag for J-pouch

Kangaroo Club – Information Day

Ileoanal Pouch Report 2017

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The Red Lion Group is a UK registered charity number 1068124