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Clinical trial of a novel drug for the treatment…

Clinical trial of a novel drug for the treatment of chronic, antibiotic resistant Pouchitis in patients with a pelvic pouch

Do you suffer from chronic, antibiotic resistant Pouchitis with at least two episodes in the past year?  Does the problem continue, even after a two-week course of antibiotics?  Are you aged between 18 and 75 and had your original pouch operation due to ulcerative colitis?  Has it been at least a year since your stoma was closed?  If you answered YES to all of these questions then you might be eligible to take part in a clinical trial being conducted in the UK over the coming months.  

Recurrent, persistent Pouchitis is a continuing challenge for many pouchees, as we know from many interactions with RLG members and the wider pouch community in the UK.  Antibiotics are the standard treatment but in some cases the condition persists after antibiotic treatment and there is currently no clinically proven treatment if antibiotics fail.  Now a San Francisco based drug company is developing a novel treatment specifically to treat persistent, antibiotic resistant Pouchitis and they need your help.  If you meet the above criteria and you want to know more about this trial then please click on https://researchforyou.co.uk/pouchitis-study-1/ or telephone 0800 633 5507 (freephone) or Text MAC and your NAME to 81025.   If you are eligible and you wish to proceed then you might be enrolled into a clinical trial which could benefit you and could lead to the approval of a novel treatment from which many future Pouchitis sufferers could benefit. 

The study is being done at 5 centers in England and will be conducted to the highest ethical standards to protect your wellbeing. A reimbursement of up to £1,135 is available to repay travel and inconvenience costs.  We are excited by the prospect of a new treatment for this troublesome and persistent condition. 

In the interests of transparency, MAC are making a modest donation to RLG for helping to publicise this trial. This money will be used by the Trustees to provide support to our members and to support fundamental research into clinical aspects of pouch and cancer care.  From an ethical perspective, we cannot endorse the study drug and cannot predict the outcomes of the clinical trial.  Participation in the trial will be your informed choice and expressing an interest does not commit you to anything.

Best wishes

David 

David Davies



RLG Chairman   

If you meet the above criteria and you want to know more about this trial then please click on button below.

Find out More

I get high with a little help from my…

A healthy love of walking turned into a more serious passion for rock-climbing for Michael Teanby thanks to the advice of a friend and a change of girlfriend

Perched on a long narrow ledge 40 metres above the sea and about 40m below the clifftop, the pressure was growing, the pressure that had replaced the normal ‘urge’ for a bowel motion 11 years ago. The setting sun was still warming the rock and my girlfriend was about to set off on the second pitch1 of the Atlantis/True Moments/Freebird route2; the long weaving route is a bit of a sought-after classic on the Castle Helen sea cliffs of Holyhead. 

Michael Teanby mid-climb

As I was shifting uneasily on the belay stance3 regretting my earlier choice of downing that second cup of tar [I like to call coffee], my pouch emitted an audible grumble. Looking at my girlfriend I uttered ‘the time is nigh’, crag code for ‘I really need the toilet’. 

Unfortunately, there was the problem of our current position; the only way off the ledge was another two hours of climbing. So, making a hollow under a thick section of moss, there I perched baring all on the narrow ledge, hoping to make do with the four sheets of tissue I found in my back pocket. Thankfully we had the cliff to ourselves and I have a very understanding partner. 

There were however a couple of day fishers in boats who had been watching our steady progress up the cliff, and a kayaking party passing by; I just hope they weren’t using binoculars! 

Burying my embarrassment and scratching a small apology onto a nearby loose rock before using it to weigh down the moss, we turned our attention back to the route’s second pitch the ‘True Moments’ traverse4. Eugenie set off steadily, calming her nerves for what was to come – before her lies a 15m traverse across slightly suspect rock. At the end of the traverse a bold vertical 8m section of climbing remains, the crux5 is 4-5m above the last good piece of protection. A fall certainly wouldn’t mean death, but you’d definitely be shaken as the ropes caught you after 10m of free fall. 

Fortunately, all went well; we gained the top without further issue just as the sun was setting over the Irish Sea, the summer’s heat still radiating from the red quartzite rockface that had facilitated our passage up the cliff, and the coconut scent of the gorse flowers drifting by on the breeze. My life had never been better.

Occasions like this are surprisingly rare for me. Compared to the usual three hours, when climbing I can often go six to eight hours without needing the toilet, and despite not changing my diet in preparation, there is usually ample time to bag6 a route and remain in comfort. I don’t know why; maybe it’s just the adrenaline slowing my digestive system as blood is diverted to more critical areas, though that too is strange as I find climbing relaxing. There’s an addictive flow to it, that perfect level of clarity and stress that comes from having your entire being focused on a single task.

Mountains and cliffs haven’t always been part of my life. The Lincolnshire Wolds and salt marshes of my youth are quite devoid of rock. In 2011, two years after I’d lost my left kidney to an adhesion, a friend invited me to North Wales. Nothing special, just a walk up Snowdon, but I was hooked. 

Over the next three years my bond with this friend grew stronger, walks got continuously steeper and more technical, and we’d spend a week each summer roaming across the mountains of Scotland. Technically it’s called scrambling, it blurs the line between walking and rock climbing. In 2014 I picked up my first rope. As our scrambles were getting steeper still, learning how to protect ourselves correctly seemed prudent. We were soon moving across terrain that three years before would have seemed like an insane proposition, but here we were playing in the mountains to our hearts’ content.

Climbing has added a great deal to my ‘mental toolkit’. My stress response improved, and my social skills, situational awareness, general fitness and outlook on life all shifted thanks to this wonderful pursuit and the welcoming community that surrounds it. Though not all without cost. As my love (obsession?) for rock and adventure grew, so did a rift in my relationship at the time. We’d been together for nearly 10 years but 2016 saw an end to that. She’d been with me through all my surgeries and stuck with me. There was once love but it had faded; arguments would start and end with threats like “you’ll not find anyone who’ll accept your condition”.

At times I was no kinder; looking back I realise that I was becoming ever more distant and continually more uninterested in the relationship. That’s what decided it, I wouldn’t stay in one relationship out of fear of rejection in another; it just wasn’t healthy. I’d always been completely open about my condition with friends and climbing partners and never once had someone not welcomed me or accepted my toilet habits.

Enter Eugenie, the wonderful woman who four years later would be sat at one end of a narrow ledge 40m above the sea, giggling at the ridiculousness of the situation whilst I wrestled with my harness trying to relieve myself a couple of metres away, all the while hoping another team of climbers didn’t appear. She’s sat there giggling a lot to be fair – the multiple times I’ve forgotten my toilet kit whilst heading to a crag, only to watch me gather various leaves to use as a paper substitute. For reference the best is sphagnum moss, naturally moist and quite durable, as good as a baby wipe and compostable.

Hopefully 2021 will allow me to return to the mountains I love so much, and maybe I’ll see a few of you among them? Just remember a toilet kit, not all areas offer substitutes as kind on the skin as sphagnum moss.

Michael checks his phone messages

The climber’s glossary:

1 A pitch is a rope length (50-80m)

2 The name of a tour in climbers’ language

3 The belay stance is a climber’s position when anchored to a rock and paying the rope out to a lead climber

4 To traverse means to move horizontally across the rock instead of vertically

5 The crux is the hardest section of a route

6 To ‘bag’ a route means to finish it


This article first appeared in ISSUE 60: Christmas 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 all the way back to 1994.

Join Now

Now Breathe!

Given everything that’s going on at the moment, it seemed to be a good time to think about stress and how to cope with it.

Firstly, what do we mean by stress?

Stress is the body’s reaction to any change, positive or negative, that requires an adjustment or response. The body reacts to these changes with physical, mental, and emotional reactions. Stress is a normal part of everyday life. You can experience stress from your environment, your body, and your thoughts.

It is a very individual thing; a situation that one person thinks of as stressful, another person finds relaxing or invigorating.

It can be good or bad e.g. we need the physical activity of walking upright and fighting earth’s gravity to maintain good bone density. Too little due to prolonged bed rest or a stint in a space station (!) and our bones thin and become osteoporotic. Too much, say from excessive road running in poor shoes, and we overload the bones which may result in stress fractures.

Similarly with mental stimulus; too little and we get bored and restless, too much and we risk burnout.

So what tips us over the edge?

Demands can come from work, relationships, financial pressures, health issues and many other situations, but basically anything that poses a real or perceived challenge or threat to a person’s well-being can cause stress.

It’s usually a combination of factors; too much stress, especially over a prolonged period of time combined with the feeling that you have little control over the situation, can overload you both physically and mentally and so have a negative impact on your well-being.

Most of us can cope with stress in one area of our lives, say work, as long as we have a happy and supportive home life and are in good physical and mental health. However, if home life or health is also affected then it can become harder to cope as we get tired and rundown without any section of life in which we can take a breather and recharge our batteries.

So what happens when you feel stressed?

The fight or flight response is triggered within the body and will cause both physical and mental changes.

It is a primitive, reflex protective response designed to protect us from harm.

The system affected is the autonomic nervous system; this is the part of the nervous system that governs most of the automatic functions within the body so digestion, temperature regulation, heart and respiratory rates, urination, pupil dilation, arousal, etc.

The sympathetic nervous system regulates the flight or fight response whilst its opposite number, the parasympathetic system, regulates the rest and digest response.

The fight or flight reaction begins in the amygdala, which sits deep in the brain and triggers a neural response in the hypothalamus. The initial reaction is followed by activation of the pituitary gland and secretion of the hormone ACTH. The adrenal gland is activated almost simultaneously, via the sympathetic nervous system, and releases the hormone epinephrine (adrenaline). The release of chemical messengers results in the production of the hormone cortisol, which increases blood pressure, blood sugar, and suppresses the immune system. The initial response and subsequent reactions are triggered in an effort to create a boost of energy. This boost of energy is activated by epinephrine binding to liver cells and the subsequent production of glucose. Additionally, the circulation of cortisol functions to turn fatty acids into available energy, which prepares muscles throughout the body for response. Catecholamine hormones, epinephrine, dopamine and norepinephrine facilitate immediate physical reactions associated with a preparation for violent muscular action i.e. punching someone or running away.

This amazing chemical cascade causes both physical and emotional changes readying the body for either fight or flight.

The physiological changes that occur during the fight or flight response are activated in order to give the body increased strength and speed in anticipation of fighting or running.

The intensity of emotion that is brought on by the stimulus will also determine the nature and intensity of the behavioural response. Individuals with higher levels of emotional reactivity may be prone to anxiety and aggression which are then acted on during the fight or flight response.

This should be a short term response and once the threat is removed, the parasympathetic system kicks in and returns the body and mind to its normal, balanced state. The fight or flight response was developed in early man when most threats required a physical and usually short term response. However, many of the stresses of the modern world are of a mental rather than a physical nature; they can often occur over a prolonged period of time. Much as you might like to punch the boss, this is generally considered unacceptable behaviour and we can’t run away from work as we need to pay the mortgage. With a lack of physical release for all this tension, it can have long-term negative effects on the body and mind.

With prolonged stress, this can lead to a state of constant hyper-arousal and various long term health problems which can include hypertension, type 2 diabetes, headaches, insomnia, irritable bowel syndrome and chronic pain, as well as heart disease, stroke and cancer. Depression, anxiety, and other mental health disorders, such as post traumatic stress disorder (PTSD), can develop when stress becomes chronic.

To add to the fun, we now have coronavirus added into the mix. It feels as if it is affecting all areas of our lives, it is happening over a prolonged period of time with no foreseeable end in sight and we feel that we have little or no control over our circumstances. We have reduced access to many of the activities that normally help us to cope with stress such as meeting up with family and friends or doing various sporting and recreational activities that all help us to stay sane. So, it’s not surprising that the coronavirus situation is making most us feel at least a little anxious and restless!

So, what can we do about it?

We can’t do a lot about the external stuff at the moment but we can focus on ourselves in a good way.

Hopefully, by the time that you read this, some of the lockdown restrictions will have lifted and you will be able to do more of your normal activities.

Keeping the body working is a good way of resetting the autonomic nervous system to a more relaxed and balanced state as physical activity will help to use up the excess adrenaline, as well as encouraging the release of serotonin which helps with lifting your mood. Even if you can’t do your normal sporting activities, a brisk walk will help especially this time of year as, even on a cloudy day, your Vitamin D levels will still get a boost. Just take note that the sunlight frequency to stimulate Vitamin D production is between 11am and 1 pm, between March and October, so a lunchtime walk is ideal. Melatonin, also from exposure to sunlight, can help with sleep.

Keeping the brain occupied and active is also useful. Anything that gets the brain working is ideal.

It’s worth bearing in mind that it takes, on average, 10 – 20 minutes for the effects of adrenaline to wear off. Well written dramas are usually timed so that you get a burst of adrenaline every 10 to 15 minutes. This means that you get a gradually increasing effect over the length of the programme. Whilst entertaining, they may not aid restful sleep.

Art and craft activities are enjoying a resurgence and can be a form of mindfulness.

Both Eastern and Western cultures have used meditation for centuries so yoga or Gregorian chanting can help reset your parasympathetic system.

Singing is excellent as it encourages deep breaths.

There are many sites available with advice on mental health activities so I’m going to focus on two physical techniques that can help to mediate the effects of an overactive sympathetic system.

I’ll come clean at this point; in a previous life I was a physiotherapist. Many of the effects of stress cause physical changes so it feels appropriate to use physical means of counteracting these effects. I specialised in the management of long-term pain conditions especially back and neck pain. So, for over 35 years, I have used these techniques with patients (and myself) and most have found them very beneficial in helping them to manage their pain.

Pain and coronavirus have a lot in common. They cannot be seen, can affect all areas of your life day in and day out and it can feel that you have little control over the effects. Both are stressful and can lead to a hyper-aroused autonomic nervous system. In a hyper-aroused state, pain and anxiety levels can feel higher so anything that can help to diminish these effects can be useful.

So, what are these techniques?

One is controlled deep breathing and the other is a progressive muscle relaxation technique.

There are many variations on these themes so I’ll like to explain why I use these techniques in this particular way.

When we are nervous or anxious, we tend to take a deep breathe and then exhale as a natural way of trying to relax; we even talk about taking a breather. Similarly, we will often stretch to try to reduce the tension in our muscles. These two exercises are a refinement of this process.

Controlled deep breathing

Firstly, find somewhere comfortable to sit or lie down. You should be warm but not hot and ideally, it should be quiet. Some find gentle music in the background helpful especially if there is much in the way of background noise.

Rest your hands lightly on the bottom of your ribs with your fingertips just resting on your stomach in the gap between the lower ribs.

Take a slow deep breath in through your nose (this helps to warm and humidify the air). Feel your rib cage expand and your stomach gently lift. You should feel your lungs fully expand. Hold for a moment, register how it feels to fully inflate your lungs and then gently and slowly breath out, feeling as though you have pushed out all the air from your lungs but this should not be forced. It can help to do this through pursed lips.

Your lungs will naturally want to reinflate so just repeat this process for another 2 cycles. Then return to your normal breathing rate. More than 3 or 4 deep breaths and you will tend to feel light headed. This is normal and will disappear as you return to your natural rhythm. As you improve your breathing, you may find that you can take more breaths before becoming dizzy. If you’re not used to using your lungs fully, you may find that you cough and clear some phlegm. In these days of keeping your lungs healthy, this is a good thing and will improve with practice.

Some people find it helps to count as they do the breathing exercises.

There are various counting methods cited as having different psychological affects. All will help to activate the parasympathetic system and so decrease stress and tension.

Over the years, I’ve found that there is no right or wrong counting rate. People will find the right rhythm for them, their physique and their fitness levels. A 6ft 4in man who cycles 20 miles a day will naturally have a greater lung volume and breathe more slowly than a 5ft female who spends all day at a desk.

So, just find the rhythm that suits you best. The most important aspects are that it is a slow and relaxed tempo and that you fully inflate and then deflate your lungs; it should not be forced but it should be controlled.

As well as being a very relaxing technique, it also encourages you to use your lungs fully and help clear the lungs of any secretions, especially from the bases.

Mitchell Method of Physiological relaxation

Most progressive muscle relaxation methods tend to tense up the very muscles that we should be encouraging to relax.

This pattern is easy to see in someone who is tense. The jaws are clenched, shoulders are hunched, they are usually frowning and hands are balled into a fist. Legs may be crossed and the body tends to lean forward so, in other words, they are getting ready to fight or run.

This alternative method encourages you to learn how to recognise tension in your muscles or joints. By instructing the opposite muscle groups to work, you will automatically send a message to relax the tense muscles and joints. With practice, your body will become familiar with this ‘position of ease’ and so it will become easier and quicker to relax with the right muscle cues.

As with the breathing exercises, find a comfortable position either sitting or lying down. Warmth helps muscles to relax and a quiet space can help with focussing on the new patterns of ease.

The instructions are the same for each movement:

Gently stretch away from the tense position; it should not be painful

Pause for about 5 seconds

Then just let go and take a moment to feel the new, relaxed feel of the muscles and joints.

To begin with you should try to work through the whole sequence. This will help you to identify the parts of your body that seem to feel the most tense and the patterns that help you feel most relaxed.

  1. Shoulders. Pull your shoulders down towards your feet. Feel your neck muscles slowly lengthening. Hold for a slow count to 5 and then just let go.  Feel the new position of ease as you release the muscles.
  2. Elbows. Stretch your elbows so that your arms straighten. Feel the front of your arms stretching. Hold for a slow count to 5 and then just let go. Feel the new position of ease as you release the muscles.
  3. Hands. Stretch your fingers out straight. Feel your fingers uncurling. Hold for a slow count to 5 and then just let go. Feel the new position of ease as you release the muscles.
  4. Trunk. Push your trunk into the bed or chair so that your body makes contact with the chair or bed.  Feel your body pressing into the chair or bed. Hold for a slow count to 5. Just let it go. Feel the new position of your body as you release the muscles. Feel that your body is completely supported by the chair and body and your muscles are able to gently support you.
  5. Thighs. Roll your thighs away from one another. Feel your hips rolling out. Hold for a slow count to 5 and then just let them go. Feel the new position of ease as you release the muscles.
  6. Calves. Pull your toes and ankles up. Feel the back of your calves stretch. Hold for a slow count to 5 and then just let them go. Feel the new position of ease as you release.
  7. Eyes. Close your eyes but raise your eyebrows up as far as they will go. Feel the tightness in the muscles in your forehead for a slow count to 5. Then just let them go. Feel the new position of ease as you release them.
  8. Mouth and jaw. Keep your lips lightly together but let your teeth part so pulling your jaw down. Let your tongue is dangle loosely in the middle of your mouth. Feel the difference in your mouth and cheek muscles as you do this. Hold for a slow count to 5. Then just let go. Feel the new position of ease as you release.
  9. Breathing. Focus on your breathing; just think about taking gentle relaxed breaths. Now breathe in deeply feeling your lower ribs expand and then breathe out slowly. Do this once more and then return to your relaxed breathing pattern. With each breath feel your body getting heavier and heavier and gradually relaxing further down into the surface you are resting against.
  10. Repeat the sequence. It can help to repeat the sequence 2 or 3 times, gradually feeling yourself letting go more and more.

When you start doing either the breathing or the relaxation exercises, it helps to do them daily. Gradually, your mind and body will learn the new patterns; you will develop new muscle memories and it will become easier and easier to trigger a general relaxed state.

You can then use these techniques in everyday life by doing a quick body scan whenever you start to feel tense.

With enough practice, you will find that you will be able to use just one stretch to trigger a chain response in your other muscle groups e.g. when driving in heavy traffic, if you notice that you are clenching your hands, then just stretching out your fingers, holding for 5 seconds and then just letting go, your shoulders will also relax.

Similarly, you can use just one or two deep breaths so breaking the tension pattern before it takes hold.

As with most things in life, it is not a quick fix but, over time and practice, these techniques can help in many situations.

If you are experiencing any difficulties with these techniques, then ask to be referred to a chartered physiotherapist. If you are struggling with mental health issues, your local Mental Health team can also give you valuable advice and support. The Every Mind Matters website has some excellent advice.

Hope this helps and keep well.

Theresa Parr (Red Lion Group committee member)

Theresa was a chartered physiotherapist working in both the NHS and private sectors, both in clinical settings and teaching at undergraduate and post graduate levels. She specialised in treating back and neck problems together with pain management.

HLA-B27 – The genetic link connecting UC and other…

HLA-B27 – The genetic link connecting UC and other autoimmune conditions?

If you have suffered with Ulcerative Colitis, there is a possibility that you may be affected by other inflammatory (autoimmune) conditions such as uveitis or spondylitis.  There is a link between these conditions which is the HLA-B27 gene.

by Gary Bronziet, Membership Secretary Red Lion Group (25.09.2020)

As a young man, in addition to my UC, I also suffered with uveitis (an inflammation of the eyes) and back pain. I hoped that when I got rid of my “ropey colon” (that was way back in 1984) these other conditions would magically disappear but alas, they did not.

Over the years I continued to have occasional flare-ups of uveitis. Aware of my history of UC, my ophthalmologist at Moorfields was the first consultant to mention the link between the two conditions and the HLA-B27 gene. He referred me to be tested for the gene, a simple blood test.


“About half of all people with anterior uveitis have the HLA-B27 gene. The gene has been found in people with certain autoimmune conditions, including ankylosing spondylitis and ulcerative colitis“. From NHS website article https://www.nhs.uk/conditions/uveitis/causes/


Surprisingly, my own HLA-B27 test came back negative – although the consultant at the time said that it wasn’t always a conclusive test. 

Over time, my pouch has been extremely well-behaved and the uveitis flare-ups less frequent. My ongoing “chronic” condition has been my lower back pain and to a lesser extent, other joints including my elbows. As a keen golfer that is not an ideal situation. When asked for my handicap, my usual answer is ‘my back’!

I’ve had my back poked, prodded and scanned by a stream of spinal surgeons. The first diagnosis after an MRI was L5 disc degradation. More recently after a second MRI scan a spine surgeon advised that my “disc degradation” was “not unusual for someone of my age” and not the cause of my back pain. Being aware of my history of UC he suggested another type of scan. This was a nuclear (SPECT-CT) scan, which is used to identify inflammation. Sure enough, my spine was riven with inflammatory “hot spots”. 

I have soldiered on over the years, taken up Pilates (which I strongly recommend) and occasional facet joint injections which give temporary relief.

Which brings me back to where I started in this article and the HLA-B27 gene. I recently resorted to diagnosis by Google and have convinced myself that my back and joint symptoms are probably spondylitis (AS). This would not be surprising considering my history of UC and uveitis.

I have considered having another test for the gene, but I’m not sure it would make any difference to the prognosis. However, it might be that my next step should be to find a good rheumatologist rather than an orthopaedic surgeon. 

I wonder how many of you have a similar history and whether you have been tested for the HLA-B27 gene? If you have any experiences to share, feel free to write to me at gary@bronziet.com

Gary Bronziet


Red Lion Group

Ankylosing Spondylitis

Mental health support for pouchees and ileostomists – survey

Zeina Bushnaq, a postgraduate researcher at the University of Roehampton, is doing a Doctorate in Psychology and has a particular interest in the mental health support offered to pouchees and ileostomists.

She is currently looking for volunteers to complete a simple, online survey to help with her research.  The results will provide insight and guidance into the future mental support for pouchees, potential pouchees and ileostomists.  Ten minutes of your time to help improve the prospects and quality of mental and emotional support for pouchees, potential pouchees and ileostomists in the future.  What’s not to like?  

Zeina’s project has been approved by the University Research Ethics Committee and all answers will be treated in complete confidence and anonymised.    

Please click below for more information and to take the survey.  

Click here

Zeina needs 60 of each group of people to complete her research, please help her to achieve her goal. 

Ziena Bushnaq

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.

Join Now

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.

Join Now

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.

Join Now

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.

Join Now

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