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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
Parks Nicholls Paper 1978
Download Now!1879 Downloads

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 35+ years later it is still going strong! Thank you Professor Nicholls, from a lot us us!

Ed Note: Two Red Lion Group members, Jean Reed and Sylvia Panford were numbers 9 and 10 respectively of pouch recipients, having had their pouches created in 1978 by Sir Alan Parks. They met as patients and have remained friends ever since.  That is, 45 years and counting and their pouch’s still going strong!  They are both regular attendees on our monthly forum.

J-Pouch Information Day at St. Mark’s Hospital

25th Anniversary J-Pouch Information Day at St. Mark’s Hospital

Do you have a j-pouch, s-pouch, w-pouch or considering pouch surgery?  Have you ever attended a Red Lion Group J-Pouch Information day at St. Marks’s hospital? Whether you are a regular or first time attendee – you will be very welcome and I am sure you will find the day interesting and beneficial.

The J-Pouch Information Day on Saturday 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  Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital will be speaking on Modern developments in Pouch Surgery.

Another highlight will be Elissa Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy at St Mark’s Hospital, who will be speaking about the importance of efficient pouch emptying, the mechanics of pouch emptying and how you can empty your pouch more effectively.

Meet and mingle with other pouchees and pre-pouch patients and share your experiences in our interactive work-shops.

The cost is only £8.00 for Red Lion Group members and members’ guests, and £10.00 for non-members. Cost Includes lunch and refreshments.  Full details and registration form below.

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

If you are driving, FREE parking is provided to attendees in the St. Mark’s Hospital car-park (Please request a parking pass on the application form below).

Here is the full Information day agenda (updated 20.03.2019)

TIMEPRESENTATION
10:00-10:30Registration with tea/coffee and biscuits
10:30-10:50Welcome and AGM
10:50-11:00Personal reflections on the Red Lion group 25 years on

Dr. Martin Peters, Pouchee and first Chairman of the RLG

11:00-11:10My parallel journeys – pouch and RLG

Tim Rogers, Founder RLG member, first editor of ROAR!

And still on the committee after all these years!

11:10-11:50Modern developments in Pouch Surgery

Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital

11:50-12:20Pelvic floor perfection and the importance of proper emptying

Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital

12:20-13:30Lunch – a selection of sandwiches and cakes
13:30-14:00Pharmacy Advice for Pouchees

Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist

14:00-14:30Diet and your pouch

Gabriela Poufou, Dietician, St. Mark’s Hospital

14:30-14:45Tea and coffee break
14:45-15:55Personal pouch journeys and workshops

1) Female pouch issues Theresa Parr

2) Male pouch issues Gary Bronziet

3) Pouch family and friends (TBC)

15:55-16:00Evaluation and close

You can download the agenda below.

Information Day Agenda 2019
Download Now!1331 Downloads

If you would like to attend please download the registration form below.  Please complete the form and remit payment as soon as possible to guarantee your place as spaces are limited.

Information Day Registration 2019
Download Now!1633 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!

Let us spray, or not as the case may…

Let us spray, or not as the case may be…

How many of you use air fresheners? And if you do, which brands do you prefer? Roar’s team of expert testers give us their feedback – by Roar! editor Christopher Browne.

Please note – the Red Lion group does not endorse any product mentioned in this article.

To spray or not to spray – that is the question. Do you use an air freshener after going to the loo? And if you do, which one do you find works best for you?

For the first few months after I had my pouch fitted, I was not too concerned about its after effects or smell. I lived on my own and the only person who had to face the odours from the lavatory was me. However, it was when I went back to work and started going to social functions again that I sought ways to cope with the pungent after effects.

First, I studied the small print on the main high-street air fresheners and tried a succession of sprays without too much success. Though I found the odours from Neutradol and Febreze were slightly less acrid and medicinal than their rivals. Then I read about a spray that not only counteracts bad smells but also eliminates them. It had the neat-sounding sobriquet –odour-eater. How could I refuse? It was an apparently revolutionary concept in the mid-1990s

The brand name of the product was Airoma, aptly enough. After ordering one from the internet, I found I could order batches of three or more from eBay. They ranged from citrus and herbal fern fragrances to mango and cool –which didn’t really smell of anything and probably wasn’t meant to! After a few weeks I found the mango freshener gave off the most subtle and soothing fragrance. I continued to use it for work and play for several years and found the once murmured reactions of my friends and colleagues ceased.

I still use it, although very occasionally. As a catheter user I find I have less frequency and rarely leave more than a faint whiff in the corridors of power! If you’re a catheter user, please let me know if this applies to you too!

But enough of me for now, here are the Thoughts of Chairman Davies. “It wasn’t until I started to think about an answer to the question whether to use a spray or not that I realised how much this issue pervades my sub-conscious and drives my behaviours,”David says. “Sprays have never worked for me. If I’m in a busy public toilet then I’ll sometimes apologise with a smile to the person using the cubicle after me. They always say ‘that’s ok’or similar with a smile back and I wonder what they really think when they get inside!

“At my partner’s house we tried a few products, but they masked the bad smells with very powerful, nauseatingly sweet and synthetic smells. There are odour-free deodorisers on the market, but they didn’t do much of a job. So, we ended up with scented candles that I light (if I remember) when I’m using the toilet. The candles preferentially burn the volatiles in the air and let off a more subtle smell than the sprays,”says David.

Chairman Davies has another anti-odour technique. He has his own personal cubicle at home. “I have a convenient out-of-the-way en suite, which is my toilet of choice and is private,”he says. An eminently good idea for a family man or woman, I would have thought.But what do you do when visiting friends or going to parties?  “At other people’s houses I’ll try and locate a remote toilet rather than using the one the rest of the dinner party guests are using,”says David.

Recently a group of leading manufacturers have been endorsing products called ‘essential oil sprays’. RLG’s membership secretary Susan Burrows and several other members of the Red Lion Group use a brand called Poo-Pourri.

“I bought it on the internet at www.poopourri.co.uk. I don’t know why it works but it does. They market it as ’This before-you-go blend of natural essential oils creates a barrier to embarrassing bathroom odour.’ And the manufacturer has quite jokey instructions: ‘Spritz the bowl before you go and no one else will ever know.’,” says Susan, adding: “The spray comes from the US and this one is only available online but there are others on sale over here.

Sense of humour warning – Only watch video if you have a twisted sense of humour like me! (Ed.)

Another RLG committee member commented: “At home I don’t tend to use a spray but if we have guests, I use Poo-Pourri before I go. It is so much more effective than standard air fresheners and leaves the bathroom with a lovely lemon grass smell.”

Essential oils don’t necessarily appeal to everyone, however. Chairman Davies slightly poo-pooed the idea when he said: “They supposedly work by creating a film on the toilet water that prevents smells being released. That makes no scientific sense to me and nor does it cure the problem if you pebbledash the bowl.”

“At the end of the day all my friends and family know about my op, so I expect them to get on with it and generally they do. There is the usual mickey-taking when it comes to who is going to room with me on cycling weekends away with the lads,”he adds. I know what he means. I’ve had the same experience on a couple of overseas trips too!

Others find there is no substitute for good, old-fashioned common-sense. RLG committee member Peter White relies on fresh air to help clear away any lingering odours. “At home I tend to leave the window ajar for a few minutes with the door to the rest of the house closed. Many modern fittings allow ‘closed’windows to be slightly ajar, so allowing them to operate like a supersized trickle vent,”adds Peter.


If you found this article interesting, why not consider attending our Information day to be held at St. Mark’s hospital on Saturday 27th April 2019, where you will have the opportunity to listen to experts in the field of pouch surgery, pouch research and development and pouch care, and share your experiences with other pouchees.

Here is the Information day agenda (updated 20.03.2019)

You can download the agenda below.

Information Day Agenda 2019
Download Now!1331 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!1633 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!

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 27th April 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)

TIMEPRESENTATION
10:00-10:30Registration with tea/coffee and biscuits
10:30-10:50Welcome and AGM
10:50-11:00Personal reflections on the Red Lion group 25 years on

Dr. Martin Peters, Pouchee and first Chairman of the RLG

11:00-11:10My parallel journeys – pouch and RLG

Tim Rogers, Founder RLG member, first editor of ROAR!

And still on the committee after all these years!

11:10-11:50Modern developments in Pouch Surgery

Professor Omar Faiz, Consultant Colorectal Surgeon and Clinical Director at St. Mark’s Hospital

11:50-12:20Pelvic floor perfection and the importance of proper emptying

Ellie Bradshaw, Lead Nurse, Biofeedback Dept, St. Mark’s Hospital

12:20-13:30Lunch – a selection of sandwiches and cakes
13:30-14:00Pharmacy Advice for Pouchees

Uchu Meade, St Mark’s Pharmacy Manager, Lead Clinical Pharmacist

14:00-14:30Diet and your pouch

Gabriela Poufou, Dietician, St. Mark’s Hospital

14:30-14:45Tea and coffee break
14:45-15:55Personal pouch journeys and workshops

1) Female pouch issues Theresa Parr

2) Male pouch issues Gary Bronziet

3) Pouch family and friends (TBC)

15:55-16:00Evaluation and close

You can download the agenda below.

Information Day Agenda 2019
Download Now!1331 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!1633 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!

Ancient ROAR archives discovered!

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.

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.
Register Now

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.

Register Now

 


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.

 

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.

 

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.

Kangaroo Club – Information Day

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

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