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How Rebecca took those vital first steps to recovery

RLG member Rebecca Berzins almost became an also-ran when pouch surgery threatened her passion for running. Then sheer determination took over.

I’ve always been a keen runner, enjoying the buzz and camaraderie of several fun runs, 5ks and a half marathon or two – even during the four years I had a stoma.

However I faced a much bigger snag in 2016 when I had a pouch operation. Suddenly I began to struggle to get back into my familiar running routine again, sometimes finding the timing of my runs tricky and unpredictable.

I decided that with some good planning there was no reason why I couldn’t take it up again. So at the start of 2019 I signed up for the Vitality 10k – a 10-kilometre run through the streets of London. I decided that I’d be damned if my pouch was going to rob me of my passion for running!

I duly printed off a training plan and to the cheers of my four-year-old daughter, Cleo, shouting “Run faster Mummy”, I set off running again. Despite not being altogether in the best of shape physically I knew that, on the days that I did feel up to it, stepping out for a run would make me feel like me again. Running always makes me feel fit, healthy and alive!

As race day approached friends and family started asking me how they could sponsor me so I decided to use the opportunity to raise funds for the Red Lion Group. Having sat in on the AGM at the annual Information Day in April 2019, I knew how valuable the funds would be.

Sticking to my training plan was tough at times as on bad pouch days I couldn’t run as planned. Yet I tried not to get despondent and kept in mind that I was taking part in a race that was important to me – not simply bettering past racing times.

During my training I ran first thing in the morning before I ate anything as I find that is the easiest approach. But on race day my start time wasn’t until 10.45am so I knew I would need some fuel. I had a light breakfast first thing and left myself plenty of time to empty my pouch and make several toilet trips before the race started (although race day nerves meant I’ve always done that anyway so I can’t really blame my pouch!).

Being a little out of practice and somewhat short of training meant my knees were struggling by the halfway point, but I was pleased not to have to make any toilet stops during the race, which took me a little over an hour to complete.

It was wonderful to be back doing what I love again and I am delighted that I raised £605 for the Red Lion Group.

**Finishing touch: Rebecca Berzins with her Vitality 10k medal**

Ed: Congratulations Rebecca! We very much appreciate your fundraising efforts

A version of this article first appeared in 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 all the way back to issue number 1, published in 1994.

See pouchsupport.org/join for further information.

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Coronavirus Update

Many of you have been contacting us over the past few weeks about the coronavirus outbreak expressing understandable concerns about its effects on your health, work, finances and general well-being.

It has also meant we have had to postpone the Red Lion Group’s Annual Information Day and AGM, which was due to take place on 25 April, in compliance with government restrictions. We recognize the value of the Information Day to our members and are constantly reviewing the possibilities of a re-arranged event later in the year. We will keep you posted on this.

Covid-19 has posed many questions and concerns for us all about both the present and the future. In particular the “at risk” status of pouchees and potential pouchees who are on various medications.

There is very clear and concise advice on this topic on the websites of the Ileostomy and Internal Pouch Association (IA) ( Click here ) and Crohn’s and Colitis UK ( Click here ) and we suggest you refer to these in the first instance

If you still have issues or concerns then please don’t hesitate to contact us at info@pouchsupport.org.

The RLG Committee

Information Day Postponement

Dear Members and Guests,

The Red Lion Group Committee has reviewed the latest updates regarding the emerging Coronavirus situation across the UK and implications for the safe conduct of the Internal Pouch Annual Information Day scheduled to take place at St. Mark’s Hospital on Saturday 25^th April. As the outbreak is still gathering pace in this country, it is not possible to accurately forecast what the coronavirus status will be in 6-7 weeks’ time. Nevertheless, the Committee has taken the decision to postpone the Information Day until later in the year, when hopefully the situation will be under greater control. This is especially pertinent to pouchees and potential pouchees whose immune systems may be compromised and reflects our determination to look after the safety and wellbeing of our members and their guests at all times.

We realise this will be disappointing to delegates and appreciate your understanding of the need for this action. We will be monitoring the situation closely and will be announcing the alternative date for the Information Day as soon as possible via the usual channels (our web site, emails, posters, letters and through social media).

Thank you for your patience and continuing support. We remain open online at all times on our web site at pouchsupport.org or by email at info@pouchsupport.org and of course we wish you all well.

The RLG Committee

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.

Join Now

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.

DD and Bev’s Choppertastic canal ride for RLG

DD and Bev’s Choppertastic Leeds-Liverpool canal ride for RLG

Our charity now has an account with Just Giving to facilitate fund raising via on-line donations to provide much-needed funds to improve our services and support to people with pelvic pouches in the UK. Up until recently the Just Giving service was out of the reach of small charities such as RLG, but recent industry changes mean Just Giving have been forced to provide their services for free. Hence our registration! So if you have any burning ambitions creeping around the bottom of your bucket list or indeed just a passion to raise money for RLG then we would warmly welcome your support with a fundraising initiative. Please don’t feel that it has to be something immense. Recent examples I have seen for charity fundraising have including simple things like “Guess the number of Easter eggs in the jar”, a sweep on the Grand National and a sweep on the winner of the Six Nations rugby competition. Let us know what you want to do and we will provide all the support to get you started.

As a starter, my partner Bev and I will be cycling the 127 miles of the Leeds-Liverpool canal on 22nd and 23rd June and your support will be greatly appreciated through donation to help us during the bleak moments. As you know, RLG is entirely run by volunteers and with no overheads, so every single penny you donate will go to this worthy cause. You can donate at

Donate

David Davies
Red Lion Group Chairman

You can visit the Red Lion Group Just Giving Page, or start your own fund raising for the Red Lion group using the buttons below.

Date announced for 2020 Information Day!

An initial announcement that the Red Lion Group Information Day and AGM, 2020, will take place on Saturday 25 April at St Mark’s Hospital, Harrow. This will be another action-packed day catching up on the latest topics of interest to pouchees, potential pouchees and relatives and friends of pouchees! All welcome but numbers will be limited. Please keep the date free! More information will follow as the agenda firms up.

A record number of attendees at 25th anniversary 2019 Information day at St. Mark’s Hospital.

They came, they saw, and heard all about living…

They came they saw, and heard all about living with a j-Pouch….and ate some cake as well!

Twenty-five years young and who better to celebrate such an epoch-making event than the first chairman Dr Martin Peters who flew back to the UK from Spain and even postponed his own wedding anniversary to launch this year’s Silver Red Lion Group Information Day.

Dr Martin Peters, the first chairman of the Red Lion Group

Epoch-making, age-defying – all descriptions apply – this turned out to be the largest and best-attended Day in the group’s history with more than 80 Red Lion members, relatives and healthcare professionals meeting and mingling at St Mark’s Hospital’s Himsworth Hall on 27 April this year.

At least five RLG founder-members joined the celebrations and both Dr Peters and founder-member Tim Rogers, the first editor of Roar!, gave rallying speeches and assured us that the new days are just as good as the old – if not better! And the stats bear this out, with a growing membership, a greater reach in the UK and overseas and a flourishing new website.

Every Information Day celebrates progress and change in recovery, achievement and technology – as reflected in the talks which featured such topics as biofeedback (Ellie Bradshaw, St Mark’s lead biofeedback nurse), Pharmaceutical research (Uchu Meade, St Mark’s pharmacy manager), Diet (Gabriela Poufou, St Mark’s dietitian) and the workings of the ileoanal pouch (Lisa Allison, St Mark’s clinical pouch nurse specialist).

But perhaps there is no better sense of fulfilment than discussing your personal problems and challenges at a workshop, as members found at three animated events for male and female members – and families and friends – which enabled them to speak openly and frankly about their concerns with fellow members.

It was a day to remember – aptly summed up by one Red Lion member who said: “Even though I have had my pouch for 21 years, I picked up some very useful tips and I loved the opportunity to meet other pouch owners.”

See you at the next one in 2020!

First editor of Roar, Tim Rogers (Left) with current chairman David Davies (Right)

Dr Martin Peters and David Davies cut the 25th anniversary cake

You can download the presentations below.

Pelvic Floor Perfection and the importance of Emptying -Ellie Bradshaw

Don’t forget, you can find presentations and/or video recordings from this year’s and previous year’s Information Days on our resources page from the menu bar or by tapping here.

Calling All Fundraisers!

CALLING ALL FUNDRAISERS

The Red Lion Group is actively seeking enthusiastic individuals to help lead our 2019 fundraising drive.

Raising money for good causes is part of what we do and we have funded research projects into inflammation of the bowel, pouchitis and faecal transplantation among others in our quest to help support new and potential pouchees throughout the UK and Europe.

Fundraising takes many forms such as individual donations – which as a registered charity enables us to claim £2.50 gift aid for every £10 raised – sporting events such as running, cycling and swimathons; sweepstakes with friends and family which are a lively and fun way to raise money – and what could be better than to start with the 2019 Rugby World Cup in Japan!

RLG is working with two major online platforms, to help you raise money from the comfort of your sofa or amid the razzamatazz of a road cycling event. As you know, the Red Lion Group is run by volunteers and has very few overheads, so almost every penny you raise will be used to help these causes.

Chairman David Davies will be doing a cycling event – the Leeds/Liverpool canal over two days in June. It’s 127 miles of reasonably flat terrain, but the kicker is that he and his partner will be doing it on Raleigh Choppers. These are iconic bikes of the 1970s – you either had one or you didn’t and if you didn’t have one, you were a complete nobody!

Suddenly it’s springtime again and the green shoots are here! So why not tell us about your fundraising ideas and events by contacting the RLG chairman David Davies or Roar! editor Chris Browne at info@pouchsupport.org.

We’d really love to hear from you!

How Rebecca took those vital first steps to recovery

Coronavirus Update

Information Day Postponement

When did you last suffer a fracture?

March of the medical robots

March of the medical robots

Zoey joins the J-pouch set

DD and Bev’s Choppertastic canal ride for RLG

Date announced for 2020 Information Day!

They came, they saw, and heard all about living…

Calling All Fundraisers!

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The Red Lion Group is a UK registered charity number 1068124