When did you last suffer a fracture?

Chances are it was some time ago. However, bowel problem sufferers can be more prone to a broken wrist, hip or ankle than others due to a condition known as osteoporosis. Red Lion member Sandy Hyams explains.

Sandy Hyams with her Welsh terrier, Lucky

Seven years ago, I had a nasty fall, breaking and dislocating my shoulder and sustaining nerve damage. I also started suffering from back pain which no amount of painkillers seemed to budge.

To add to my woes, I discovered that I had wedge compression fractures of the spine when the bones become “squashed” due to their reduced strength.

As you can see I’m not one to do things by halves! In fact, I lost count of the number of physiotherapists I visited in a vain attempt to relieve my constant pain. And it was not until a GP suggested I have a DEXA scan* that I discovered osteoporosis had been the culprit all along.

It all started when I tried to reach up into the top of a bedroom wardrobe to lift down a blanket and fell in the process. When I fell over there was a loud crack as I felt my bones go.

As part of the fall-out (excuse the pun!) I lost about three inches in height and suddenly – it all seemed to happen overnight – I found all my trousers were too long and I couldn’t get up to shelves that had been well within my reach before.

Brittle bones

So, what exactly is osteoporosis? It is a brittle bone condition that is usually discovered – as in my case – after a fall. An estimated one in two women and one in five men over 50 suffer such fractures which usually occur in the wrist or hip.

Osteoporosis is often referred to as the “silent epidemic” and UC (ulcerative colitis) and Crohn’s sufferers are particularly prone to it. Among the danger signs for bowel disease sufferers are long-term use of steroids, low body weight, poor food absorption and long periods of immobility.

Other contributory factors are family genes, low calcium intake when young, heavy smoking, excessive drinking and lack of exercise. Low bone density also increases with age and one of the major risk factors for post-menopausal women is a declining level of oestrogen, the hormone which protects by balancing the removal of old and the renewal of new bone cells.

Key remedies

Reassuringly, osteoporosis can be treated and prevented. Three effective ways to help strengthen your bones and general skeleton are to revert to a calcium-rich diet, use weight-bearing exercises at home or at the gym and take Vitamin D supplements and get as much natural sunshine as possible! All these remedies help the body to absorb calcium.

For many years the only treatment available for women with osteoporosis was HRT (Hormone Replacement Therapy). Now, however, there is a range of non-hormonal drugs on the market, including the commonly prescribed bisphosphonates, which are mostly in tablet form and taken either daily, weekly or monthly. There are also intravenous and subcutaneous injections. Like most medicines, they all have possible side-effects. For instance, bisphosphonates can cause digestive irritation, a sore throat or difficulty in swallowing.

For me, one of the drawbacks of regular tablets was needing to take them first thing in the morning on an empty stomach and then remaining upright for 30 minutes afterwards. After speaking to a consultant, I decided to opt for Prolia (known as Denosumab), a twice-yearly jab given at my local GP surgery. A week before each injection I have a blood test to check my calcium and vitamin D levels.

If you think you might be at risk of osteoporosis, it would be a good idea to discuss with your GP whether you need a referral for a DEXA scan. It could certainly save you the pain and misery of broken bones in the future. Although osteoporosis does not make a fracture a certainty, the chances of suffering a broken bone are undoubtedly more likely.

* Most hospitals have this scanner which measures the bone density of the spine, hips and femurs and is a simple and pain-free procedure that uses very low doses of radiation.

For more information on any aspect of osteoporosis, you can phone the Royal Osteoporosis Society (ROS) helpline on 0808 800 0035 or email nurses@theros.org.uk. ROS also has an extensive range of free booklets, leaflets and factsheets about the condition.

Ed: If any RLG members have had similar experiences to Sandy’s, please write to our Letters page (cbrowne@brownemedia.co.uk).

This article first appeared in ISSUE 58: Christmas 2019 edition of ROAR!

If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support Group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

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March of the medical robots

Keyhole – or laparoscopic – surgery has been the buzz-phrase in cutting-edge surgery – if you’ll excuse the pun. Until recently. Today robots are giving surgeons a speedier, more efficient way to perform pouch operations, reports Christopher Browne.

**Danilo Miskovic, St Mark’s Hospital’s lead robotic surgeon**

If you want to liven up a dull dinner party or even a high-level business meeting – and who doesn’t! – mention robots. Once coveted by filmmakers and sci-fi lovers, the march of the robots is revolutionizing our approach to almost everything from domestic chores to high-end technology.

And, hold on a minute, there have been rumors spreading through the hospital wards at St Mark’s about a group of surgeons and a …… robot! It’s just robotic gossip you might say, but you’d be wrong for it’s all true.

For almost two years now a team led by Professor Omar Faiz, St Mark’s Hospital’s clinical director, has been pioneering a research programme into robot technology, financially backed by a St Mark’s Hospital Foundation fundraising campaign.

The campaign funded the capital costs of the purchase of a Da Vinci Xi surgical robot – the most advanced of its kind in the world – in March 2018. Just a month after the robot’s delivery, a group of St Mark’s surgeons performed the hospital’s first robotic operation on a bowel cancer patient.

As the UK’s first hospital to use robot technology almost exclusively for bowel surgery, St Mark’s has carried out 180 plus robotic operations on mainly bowel-related cases. “We set ourselves the goal to perform 80 robotic colorectal operations in our first year and we easily exceeded this target. One of the cases was particularly unique: it involved two surgeons operating robotically on both a patient’s bowel and liver during the same operation,” said Jason Bacon, CEO of St Mark’s Hospital Foundation.

Another “first” occurred In August this year when a team of four surgeons, including Mr Danilo Miskovic, St Mark’s lead robotic surgeon, carried out a 12-hour pelvic exenteration [an operation to remove multiple organs in the pelvis] on a young father with cancer which had been caused by complications with ulcerative colitis.

Two months later, a team headed by Prof Faiz and Mr Miskovic, performed the first-ever robotic ileoanal pouch surgery on a St Mark’s patient.

“We believe the introduction of robotic surgery is an important milestone in reducing the risk of recurrent disease, and provides patients with a good short- and long-term quality of life. Similar to laparoscopic surgery, it is minimally invasive but it also provides the surgeon with magnified, high-definition 3d images to enable extremely precise surgery,” said Mr Bacon.

“While robotics has been established in other surgical specialties, namely urology and gynecology, its application has not until recently been widely researched and implemented for bowel disease surgery.”

Since the robotic surgical programme began, St Mark’s bowel cancer surgeons have been training to use the robotic surgical tool, while a fellowship in robotic surgery, funded by Intuitive Surgical, supplier of the Da Vinci Xi robot, will train more surgeons in the next three years.

**Operation robot: a St Mark’s team carry out robot-assisted surgery**

This article first appeared in ISSUE 58: Christmas 2019 edition of ROAR!

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Zoey joins the J-pouch set

Intrepid bodybuilder Zoey Wright who was crowned world champion fitness model while wearing a stoma-bag at the Pure Elite Pro World Championships recently has taken the next step and had a J-pouch fitted in April this year.

The Red Lion Group offer Zoey our warmest congratulations for her bravery and decision to opt for a J-pouch. Our thoughts are also with her during her post-op recovery period.

Despite more than four years of serious uc issues and frequent visits to hospital, Zoey, as many Roar! and pouchsupport.org readers know, decided to continue her bodybuilding and fitness model career while wearing a stoma-bag. Her success with an ileostomy in the world championships is probably a first in the worlds of sport and fitness.

27-year-old Zoey told Roar!: “Recently, I said goodbye to my stoma and hello to my J-pouch. I lived with my stoma for over four years and so it is taking some time adjusting to the new ‘plumbing’, but I’m extremely happy with how my recovery is going so far.

“My surgeon and his team at the Royal Cornwall Hospital have been amazing and there to answer any questions big or small! I’m looking forward to getting back into weightlifting and fitness instructing very soon and hopefully go from strength to strength with my J-pouch!”

You can keep up with Zoey’s progress on www.zoeywright.com, Twitter (@zoeywrightx) and www.instagram.com/zoeyfitness.

Dysplasia: the pros and cons of surgery

Dr Misha Kabir

Decisions, decisions, decisions! Sound familiar? If you’re a potential pouchee one of the biggest decisions you may have to face is whether to have surgery after a bout of dysplasia -pre-cancerous cell changes that can lead to cancer if they are not removed.

In most cases dysplasia can be taken out during a colonoscopy (an examination of the large bowel and part of the small one using a flexible tube known as an endoscope). If this process doesn’t work, most medical professionals recommend surgery to remove the large bowel and the fitting of fit a pouch or stoma.

In a recent St Mark’s Hospital survey, which polled 113 responses, (see the December 2018 Roar!page 14) almost two-thirds of patients (64%) diagnosed with dysplasia opted to have surgery while 36% decided not to do so and have regular monitoring instead.

However, 35% of those who had never been diagnosed with dysplasia chose the surgical option, while 30% preferred regular monitoring and a further 35% were uncertain about what they would decide to do.

The reasons respondents gave when considering treatment are shown in Box 1 (below):

Survey leader Dr Misha Kabir, Clinical Research Fellow in IBD and Endoscopy at St Mark’s Hospital, told Roar!: “The respondents who preferred surgery were more likely to think that dysplasia progressed to cancer within a year and that colonoscopy surveillance alone would probably not prevent cancer developing in the future.

“Three-quarters of the 47 respondents who had previously been diagnosed with dysplasia felt well informed by their medical teams about the risk of cancer associated with a dysplasia diagnosis and the management options available to them.

“The majority also did not regret the final decision they made to have surgery – or not – for the dysplasia. They also completed a quality-of-life score which on average was the same for the patients who had surgery and those who had not done so.”

The reasons for not feeling well informed are highlighted in Box 2 below:

Dr Kabir added: “We hope to address the issues raised in Box 2 and to improve the information and the support we give to patients making these decisions in the future. As always we are grateful for the invaluable role that support groups like Red Lion Group continue to provide to patients making decisions about surgery.”

The high life – a snowboarder’s secrets of success

If you’re looking for thrills – and spills – snowboarding or boarding is today’s snow-lover’s favourite. For those seeking the X-factor splitboarding – when the board divides into two to cope with tricky slopes and rough terrain – is the ultimate experience. Red Lion Group member Adam Bramley reports.

Adam Bramley and his touring ‘buddy’ Valentina

Slippery slope or path to success: Adam Bramley on Courchevel

A spell of unexpectedly warm weather in the French Alps earlier this year proved a double bonus for snowboarder and pouchee Adam Bramley. His health suddenly changed for the better and his passion to get back on the slopes was almost instantly rekindled. “Having had my takedown in October 2018 at the end of a three-stage surgical process I was absolutely desperate to get back on the snow,” says Adam, who had his operations at the Queen’s Medical Centre in Nottingham.

The intrepid boarder, who was staying in the famous French ski resort of Courchevel with his ‘touring buddy’ Valentina, adds: “The improvement continued throughout February, March and early April this year. And with some decent piste-skiing under my belt and a good few kilograms back on my frame, courtesy of copious amounts of excellent French cheese, I started looking towards bigger challenges.”

As many snow enthusiasts know, one of the key features of the French Alps is its refuges – places where people can stay varying in size from simple mountain huts to small hotels with hot food and showers. “We decided that a hut-to-hut route would give me the opportunity to get out into the mountains for a few days, making our way across untracked snow and getting in some good descents.”

On the first day the pair stood excitedly at the foot of Courchevel 1650 (the number marks the mountain’s height) with 30 litres of kit on their backs and “looking nervously up at the 1,000 metres plus of ascent we’d planned for the start of our adventure,” says Adam.

“Our three-day adventure passed in a blur. Hut-to-hut touring is a challenging undertaking at the best of times. You have to carry all your food and equipment, manage the weather, snow conditions and avalanche risk, navigate through tricky terrain, climb using nothing more than your own leg power, descend steep slopes in variable snow conditions and finally heat the hut where you are staying at the end of each day.

As well as the physical challenges, Adam had bravely decided to give his six-month-old J-Pouch a trial run without the security of any traditional back-up support or facilities.

And the highlights were spectacular. Each day the pair watched as the sun climbed over the mountains and the snow turned golden yellow in the pre-dawn morning light. On another day they had the thrill of descending a perfectly even 600m-long 45 degree slope “all the way into the valley” and during one lunch-break they were even approached by an alpine fox. Two other unforgettable moments were lying on a rock and watching as a series of avalanches poured off the upper Alpine slopes in the afternoon sun and the “feelings of fear we experienced when stuck and exposed on a bitterly windswept ridge turning to absolute exhilaration moments later as we charged off it into a late April powder-field,” says Adam.

So how did Adam’s pouch fare during his Alpine adventure? “Physically I didn’t feel too bad. There’s still a big weakness in my core and I’ve got another 10kg to gain before I’m back to my previous weight – including a lot of work to do on my abs before I can truly trust them again. The pouch was OK. It started off great, but by the end of the second day I was feeling a bit gripey, which I’m blaming on a combination of much greater physical effort than I’d done previously and a sudden change of diet. It worked though and this adventure has stoked the fires for bigger trips next time,” he says.

“What I have gained is the confidence that one day I’m going to get back to something pretty close to normal – something I wasn’t 100 per cent confident about beforehand. I’ve definitely still got a lot of healing and learning to do and my next step is going to be to take six months back at home focusing on my health. Come next winter though I’m confident that I’ll be back in my snowboard instructor’s uniform.

Next year, after a long period of unbroken recovery, Adam plans to finish his International Snowboard Teacher Diploma (ISTD) exams – which he began before his spell of ulcerative colitis – and become a fully-fledged snowboard instructor.

“It’s often stated that pouches continue to improve for 10 years – and I’m pleased with where mine is after only six months,” says Adam.

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.

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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!

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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.

When did you last suffer a fracture?

March of the medical robots

March of the medical robots

Zoey joins the J-pouch set

Dysplasia: the pros and cons of surgery

The high life – a snowboarder’s secrets of success

The Internal Pouch – it started with this historic…

The Internal Pouch – it started with this historic paper in 1978

Let us spray, or not as the case may…

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

Medication for your internal pouch – keep taking the…

Medication for your internal pouch – keep taking the tablets!

Your Internal pouch, dehydration and fragile skin

Skin elasticity:

Cracking skin:

Avoiding skin damage:

Repairing skin damage:

25th anniversary special – from the first chairman of…

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The Red Lion Group is a UK registered charity number 1068124