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

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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.

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

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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

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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!

Medication for your internal pouch – keep taking the…

Medication for your internal pouch – keep taking the tablets!

Codeine or loperamide? Ciprofloxacin or Metronizadole? All too many of us have faced a nagging decision about which drug to take for a pouch problem or a spell of pouchitis. But, happily, help is at hand. At a previous Red Lion Group Infomation Day, St Mark’s Hospital’s Pharmacist Yee Kee Cheung gave us a guide to the best drugs and when to take them. Here were her findings…

Your Internal pouch, dehydration and fragile skin

With our limited reservoirs for storing food and liquids, dehydration and dry skin are common problems for many pouchees. Acting treasurer Peter White reports

I always know the cold weather has arrived when my skin becomes more susceptible to injury. As many of us know, having an ileoanal pouch means losing out on some of the fluid absorption the large bowel or colon would normally perform. That means being prone to dehydration – and part of that condition is dry skin. For me, part of living without a colon means managing my skin.

So here are some of the key ways to deal with the problem:

Skin elasticity:

Cold and wet can make skin less elastic, and that has two impacts. First, it can split – leaving painful cracks which, sometimes do and sometimes don’t, result in minor bleeding; either way it hurts. Second, it leaves the hands more susceptible to damage, and this is the problem I really have to watch out for.

Cracking skin:

Avoiding cracking isn’t rocket science, but does require some attention. It’s quite common for women to carry moisturising hand cream, but not many men carry a handbag! Of course, there are relatively discreet ways to carry hand cream – in the car, in a work-bag, at your work desk and at home – and these cover most eventualities. In my experience women are also more than happy to share their hand cream with a man brave enough to ask!

Avoiding skin damage:

Avoiding skin damage takes more thought. For me gardening, DIY, water sports and mountaineering, each come with potential risks to the skin, and particularly the hands. Gloves are a really good way to manage these risks, and there are loads of different types available these days. For gardening and DIY leather gloves are well worth using. I recently took some skin off one of my knuckles trying to remove some wire mesh; it could have happened to anyone, but I suspect the injury was worse for me as my skin is less elastic than many people’s. For water sports I wear neoprene (wetsuit material) gloves summer and winter, which cost around £5 and absorb all the abrasion.

For mountaineering I often wear waterproof gloves and socks to reduce blisters and the effects of rubbing, and preventing the skin becoming saturated for prolonged periods. There are now a lot of waterproof gloves and some socks available for running, cycling, walking and other sports. If you can find them though, it’s well worth getting gloves which are smartphone compatible, especially in winter.

Repairing skin damage:

The body is of course extremely good at repairing itself. But constant wetness can hinder that process and result in unnecessary bleeding. With a pouch, going to the loo, and washing hands, are more frequent. So how do we keep hand injuries dry?

I have tried most varieties of plasters. Many are useless when wet. Even those that are waterproof are little use on moving parts (such as knuckles and other joints); inevitably they don’t stay on (or stay waterproof) for very long.

Something I use a lot is Germolene New Skin. Applied instead of a plaster on minor skin wounds, it’s basically like pasting UHU glue onto the injured part using a small spatula contained in the lid. Within a few minutes it has set, and a glue-like layer protects the skin from water (and infection). It can sting a bit, but it’s well worth it, as you can wash hands and have a shower without the inconvenience or discomfort associated with plasters or no covering. It’s my favourite plaster! I have even started using it for prevention on my feet, instead of taping them with micropore tape.

This article was first pucblished in Roar Issue 56 – Christmas 2018.

If you found this article interesting, why not take a look at

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

Or why not become a member. You can start the registration process below!

Join Now

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.

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.

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.

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.

Information day 2018

The 2018 Information Day took place on Saturday 12 May 2018 at the St. Mark’s Hospital in Harrow.

We were delighted to welcome over 80 attendees including pouchees, potential pouchees and medical specialists

2018 marks the 40th anniversary of the invention of the Pouch at St. Mark’s hospital and we were delighted to have Professor John Nicholls one of the pioneers and foremost experts on the subject as keynote speaker giving his personal reflections on 40 years of the pouch operation.

David Davies (RLG Chairman) with Prof. John Nicholls (a.k.a *the Rear admiral*)

David Davies (RLG Chairman) with Stephen Want

David Davies with Stephen Want, RLG member, who gave a talk about his experience as one of the earliest recipients of the pouch

David Davies with Lisa Allison after her presentation on the subject “Pouch Surgery Complications“. Lisa is a Pouch nurse specialist at St. Mark’s hospital and former Chair of the Red Lion Group.

David Davies with Dr Jonathan Segal of St. Mark’s hospital, after his presentation “Pouch Research Update – medical & surgical perspectives” .

David Davies with Mr Janindra Warusavitarne of St. Mark’s hospital, after his presentation on the subject “Modern developments in Pouch Surgery“.

David Davies with Miss Sam Evans after her presentation of “Fertility, fecundity and pregnancy with a pouch“. Sam is a Clinical Nurse specialist in pouch care at St Mark’s hospital.

There were also a number of work shops and of course food & beverage.

You can find recordings of the presentations from this years event here on the RLG web site.

We look forward to seeing you all again next year!

How pregnancy and childbirth affected my j pouch

From Rome to Raphael – How pregnancy and childbirth affected my j pouch

Knowing that many pouch owners have trouble conceiving, I feel almost guilty that my baby began more by chance than design, his existence more the result of a romantic weekend in Rome than of concerted effort.

However, once I discovered that I was pregnant, all sorts of questions began to worry me: would my pouch, created three years ago, be squashed by the growing baby? Would my absence of colon limit the baby’s nourishment? Might the pouch be damaged during childbirth? If I opted for a caesarean section, would the incision hit adhesions, and the wound heal properly given my already extensive scarring?

These worries might sound silly now, but they were pretty real to me at the time, so I decided to see a private specialist obstetrician for ante-natal care. My anxiety about being treated as a ‘normal’ mother-to-be on the NHS was heightened when I attended an ante-natal clinic at my local hospital. At each visit, I was seen by a different junior doctor, none of whom seemed to know about pouches, let alone any pouch problems associated with pregnancy.

In the end, the cost of private care was too high, and actually proved unnecessary. I asked to be put on the books of a consultant obstetrician at the local hospital, who reassured me with his knowledge of my situation, helped by an informative letter from my pouch surgeon.

The hospital consultant explained that one risk of having a caesarean was that an adhesion might accidentally be cut (the pouch itself is too far behind to be in the way), perhaps making swift additional surgery necessary to fix my digestive plumbing. However, an advantage of being at a large NHS hospital was that surgeons would be on standby in case that happened. I still preferred this option to the risk of rupturing an adhesion during labour.

Pregnancy had no effect whatsoever on my pouch, certainly in the early months. The baby settled to the left of my central scar, perhaps because adhesions to the right (where the stoma had once been) left him too little space to manoeuvre. This meant that my belly looked a little odd, and the scars didn’t stretch as much as the skin, but it felt fine.

I had to go to the loo (pouch) a little more frequently during the last month or so of pregnancy, but the consolation was that I did not suffer from constipation, which is otherwise common during pregnancy. My diet remained the same, with the addition of multi-vitamins and more fluid, and I put on weight as normal.
I must admit to feeling great relief when my pouch surgeon recommended an elective caesarean, although I could have opted for natural childbirth had I really wanted to. Somehow I felt unperturbed by the prospect of an operation – I was after all an old hand at abdominal surgery. But the rumoured agonies of natural childbirth were utterly horrifying to the uninitiated. Stitches in my tummy I can cope with, but there – no thank you! Better the devil you know…

I was fully conscious during the birth, although numbed from the diaphragm downwards by an epidural. Giddy with hope and anticipation, I giggled all the way through the operation, and was able to welcome Raphael as soon as he made his grand, if undignified, exit (or should I say entrance?). The epidural also meant that I did not have to recover from a general anaesthetic, which was a blessing.

I then spent five days in hospital, standard for post-caesarean recovery, during which I learned the basics of baby care under the much appreciated supervision of the nursing staff.

A close eye was kept on the wound, and the transition from drip to fluids to solid food was made slowly, because this had been problematic after pouch surgery.

The point where the caesarean scar crossed the long central scar took a little longer to heal than elsewhere, but six months on is almost invisible. Because of the scar tissue, I may only be able to have one, or at most two more caesareans, but a hat-trick will be quite sufficient.

My life now is unrecognisable from my ‘pre-Raphaelite’ period, but the pouch has remained efficient and trouble-free. Obviously, women must make their own decisions about pregnancy and childbirth, guided by medical expertise, but I hope that my experience will help to reassure and encourage. My journey from Rome to Raphael was not a difficult one, and now I am thoroughly enjoying the fruit of my (lack of) labour.