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P-word problems? Why not try a little yoghurt

RLG Notes Secretary Theresa Parr finds regular doses of her own home-made yoghurt help keep pouchitis at bay

Just what is it about pouchitis? What causes this painful seemingly incurable condition that many of us have suffered from time to time?

Years of research projects, in-depth case studies and scholarly medical papers have produced very little so far for patients and medical professionals to go on.

One possible remedy many pouchees turn to has been probiotics – live bacteria and yeasts that are good for your digestive system. However, the people’s favourite, VSL#3, has recently been discredited due to lack of scientific data or testimonials.

Antibiotics are the usual standby as they can give short-term relief and certainly help to allay some of the worst symptoms of pouchitis. 

But what about longer-term solutions? RLG’s Theresa Parr has her own unique method of anti-pouchitis control. “I’ve been lucky and have only had two mild bouts of pouchitis which was many years ago. I didn’t fall into the prescribing category and, as VSL#3 is very expensive to purchase, I looked at alternatives,” she says.

Her solution? Yoghurt. “For many years I’ve been making home-made yoghurt and, touch wood, it seems to be doing the trick and moreover it’s extremely simple to make,” says Theresa.Theresa uses a yoghurt maker she bought from the supplier Lakeland (www.lakeland.co.uk) some years ago. The device has an outer unit housing a heating element and an inner, removable plastic container.  Here then is the Parr formula:

“You put a small portion of your starter culture (plain yoghurt containing a balanced blend of bacteria which consume lactose) in the container, add milk (full fat, semi or skimmed according to your taste or waistline!), give it a good stir and then just ignore it for 10 to 12 hours. 

“If you want thicker yoghurt, then I suggest you strain it *. I tend to use Yeo Valley as my starter yoghurt but that is just down to personal taste. 

“Thereafter, you just use some of your home-made yoghurt to make the next batch and I only resort to shop-bought starter yoghurt if I’ve been away for a few weeks.

“Lakeland now make a new all-singing-and-dancing yoghurt-maker with an adjustable thermostat and a strainer for about £25, while Amazon (www.amazon.co.uk) sell similar for about £18. This can also make Greek-style yoghurt and cream cheese. Fancy!

“I like the fact that yoghurt has no artificial sweeteners, additives or preservatives (and I find I’ve usually eaten it all before it goes off anyway!) and, of course, you can add any extras you like to suit your palette. 

“It is also great as a base for salad dressing or with chives on jacket potatoes, etc.

“I do not know the precise strains or levels of active bacteria in yoghurt, but my pouch is a lot happier if I eat some on a daily basis.

And Theresa’s secret recipe for success? “I just throw some on my breakfast porridge!”

* Put a clean tea towel over a fine mesh sieve on top of a large bowl (at least 1 litre capacity). Then allow to stand until thin liquid stops draining through the sieve (about 1 hour).

Breakfast treat – cereal topped with yoghurt

This article first appeared in ISSUE 59: Summer 2020 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 a printed copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

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Why Zoey wears her pouch with pride

Former world champion fitness model Zoey Wright wore a stoma for four years before deciding to have a J-pouch op – and is delighted she went ahead .

My J-pouch is now 15 months old, and with each month that passes it’s becoming stronger and stronger and so is my confidence in my decision to have the two-stage surgery.

I can now go six or more hours without even thinking about the loo and most nights I sleep right though until the morning, which is something I never thought would be possible. As a personal trainer/fitness Instructor I did worry that it would put stress on how I perform in my job, but it’s been no different to when I had my stoma.

I started taking my instructor-led fitness classes around eight weeks post- takedown — under the guidance of my surgeon Mr Denzil May from the Royal Cornwall Hospital where I had my op.

I eased myself back into taking exercise and made sure I focused on engaging my core muscles to prevent any post-surgical complications/injuries and it didn’t take me too long to bounce back into action!

Since my takedown I’ve also managed two holidays, one being only 14 weeks post-closure to Tenerife with a friend which was rather boozy! And my J-pouch survived! Then at the start of this year I had a mini break to Budapest and had no worries then either. 

However, before having my large intestine removed travelling was out of the question, the thought of flying would make me incredibly anxious and I would have found eating anywhere very tricky. Now I can enjoy all the foods and drinks I like without a second thought.

Award-winner

Before I had my J-pouch created I was a fitness modelling competitor and, after three long hard years of intense training and dieting with my stoma, I was awarded the highest title recognised by Pure Elite, the fastest-growing fitness federation in Europe! 

But I’ve now decided to take a step back from those appearances on the stage with a new mission in mind. I aim to continue to train at a high level but wish to encourage and inspire people from all walks of life to start their journey in health and fitness.

I must say that as a regular gym-goer I have found the lockdown tough. There have been many ups and down with my mental health but I’ve found it a great time to reflect on what I want to do next in my career and to see family and friends who don’t normally exercise now actually MOVING has given me some great ideas to help them continue to exercise once life returns to normal.I’m feeling very grateful for my J-pouch and couldn’t be happier with the progress I’ve made.

Wright Decision” “The new me!”

This article first appeared in ISSUE 59: Summer 2020 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 a printed copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

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Help doctoral student with research project

I am passing on the chance for you to get involved in some research being conducted by a doctoral student, Zeina Bushnaq, at the University of Roehampton. Zeina is asking people with ileostomies or pouches for their experiences and thoughts regarding mental health services.

The survey takes about 30 minutes to complete, the project has been approved by the University ethics committee and your data will be confidential and anonymised.

There is no payment, but I hope a few of you will have the time and motivation to complete the survey.  Zeina has prepared a flyer for more information and your participation is completely optional!

If you would like to take part in this study, for more information please click here

Thanks on behalf of Zeina and her colleagues. And don’t forget to mention where you heard of the research.

Thanks 

David Davies

Chaiman – Red Lion Group

Video: Considering a J-Pouch? What you need to know.

Mr Toby Hammond talks about J-Pouch Surgery – Recovery Time, Risks and Benefits

New committee member Michelle Martin has made the first of a series of videos about the pouch featuring her own surgeon Mr Toby Hammond as the presenter.

The idea for the series was prompted by Michelle’s experiences of ulcerative colitis and what exactly made her decide to go ahead with J-pouch surgery.

Says Michelle: “In 2017 I had an emergency operation to remove my colon due to undiagnosed ulcerated colitis. It was a total shock. Suddenly I was living with a stoma and everything in my life had changed. 

“Initially, my main focus was to have my stoma reversed, however over time I got used to my stoma, I felt well for the first time in years and I didn’t want any more operations.”

However, she wanted to find out more about the second option – having an ileo-anal pouch fitted. “I spent a lot of time talking through my options with my consultant Mr Hammond [Toby Hammond, consultant general and colorectal surgeon at Broomfield Hospital, Essex], but I found that away from the hospital there was limited information that would help me make an informed decision. 

“I eventually decided to go ahead with the operation and just over a year later I couldn’t be happier,” says Michelle. 

As she points out: “I know deciding to go ahead with the operation is a difficult decision, and I wanted to help others in a similar situation. I approached Mr Hammond and he was more than happy to support the project, and I hope this will be the first of many videos that will help people living with a J-pouch.”

You can view the video on YouTube below.

The Red Lion Group would like to thank Mr Toby Hammond and Graham Fisher, cameraman and editor, for both giving up their time for free and helping to produce this informative film.

If you would like to become a member of the Red Lion Group, you can sign up by clicking on the button below.

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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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When did you last suffer a fracture?

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

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!

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

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.

Zoey Wright after Pouch Op

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):

Box 1

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:

Box 2

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.

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