Stories - Page 3 of 9 - Pouch support charity

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.

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.
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.
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.
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.
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.
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.
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.
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.
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.
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.

News

RLG donates to St. Mark’s Hospital Foundation

Christopher Browne presents cheque to St. Mark’s Hospital Foundation on behalf of Red Lion Group

Jason Bacon, CEO of the St Mark’s Hospital Foundation, receives a cheque for £1,000 from Christopher Browne, RLG committee member and Roar! editor (right), at St Mark’s Hospital, Harrow.

The money, which was donated by the Red Lion Group, will help fund key pouch-related research at St Mark’s Hospital. Mr Bacon commented:

“Medical research is expensive and we rely greatly on donations such as this to continue our world-class projects.”

Find out more about the work of St. Mark’s Hospital Foundation here.

Events

Make your first New Year Resolution to attend RLG…

Make your first New Year Resolution to attend RLG Pouch Forum on 4 January 2021

Re-Published on 30 December 2020

The latest in the series of RLG pouch support internet chat forums was held on Monday evening, 7^th December. Attracting some 20 attendees, the evening was the latest opportunity for pouchees to “get together” from the safety and comfort of our own homes and talk about common pouch problems and challenges and to share tips and stories. The evening was choreographed by Gary Bronziet (Membership Secretary), with Michelle Martin (Committee member) and Christopher Browne (Editor in Chief of Roar! magazine) supporting the discussions. Indeed, the discussions were so lively that we decided not to split into male and female groups, but to stay together as one group all evening.

The group discussed topics which had arisen on recent pouch forums and also personal questions and items tabled by the attendees on the night. These included a fascinating expose of the dangers of apple peel in causing the gut to go into spasm. Christopher explained the problem is the very high level of fibre in the peel, which overloads the small intestine in pouchees. One solution is to avoid them altogether, another was to boil the skins to degrade the fibrous material and finally to chew chew chew! This led on to a general discussion of other foods which can cause problems, including mushrooms, chocolate, tomatoes, orange pith and the gerkins in a MacDonalds burger (especially if you are using a medina catheter to empty your pouch).

The group welcomed a newbie, with a J-pouch created as a result of FAP in February of this year. An ultra-marathon runner before his operation, he was relatively fit and otherwise healthy at the time of his operations (unlike many of us who had UC). So he has had a relatively smooth recovery, but is still struggling with night time bowel movements and having to get up two times each night. Relatively common amongst pouchees, there were a number of solutions offered including stopping eating early in the day (he stops at 1600 hours each day!), use of Imodium and timing – 30 minutes before the last meal, correlating foods which cause more night time BMs and ensuring full emptying before retiring. The benefits of the medina catheter were discussed as a means to fully empty one’s pouch before bed time in 3-5 minutes compared with sitting on the toilet for 20-256 minutes to be sure the pouch is empty. The medina offers the opportunity to flush the pouch contents through with warm water, which some pouchees find helpful. Although another comment was that the tubing can be hard when cold, the holes can nip the anal area when being inserted and the holes can be blocked by foods which do not break down in our remaining gut (such as the MacDonalds gerkin – who knew!). It seems the medina is a bit like marmite, you either love it or avoid it (or as one pouchee said “I’m not ready for it yet”, which resonated with me). There is an alternative to the medina catheter called the aqua flush system which Committee member Theresa Parr was keen to champion. More expensive than the medina but with some design improvements, it is available on prescription from your local GP. Mind you, given the postcode lottery for prescription of VSL and biological anti-inflammatories, I think it’s safer to say that the aqua flush system might be available on prescription, but be prepared to make a firm case for it when you visit the GP.

The frequency and need for medical check ups for pouchees was discussed. It became apparent that many of the group did not have regular (annual) check ups and were not chased by their surgeons to attend follow ups. By contrast, others attend every year, whether they have any problems or not. One attendee commented that they had some dysplasia in their rectal cuff so felt that a regular check up was justified to check that the dysplasia has not developed into something more sinister. Many pouchees rely upon the expertise and experience of pouch nurse specialists, where such staff are employed. These specialists are very much on the front line of pouch care and are able to discern very quickly if an issue needs further investigation or resolution by a consultant. They can also offer simple tips or reassurance if indeed the problem is not so urgent. Many centres in the UK do not have pouch nurse specialists; in which case the nurse specialist is usually a stoma nurse. However, this is not ideal.

Other topics included the safe limits for lifting weights generally and specifically in relation to exercising in the gym. Theresa Parr, a retired NHS physiotherapist was able to provide informed comment that the weight is not so important as the way in which you lift the item. Safe practices such as keeping the back straight and not stretching out when lifting were more important in terms of keeping healthy than the weight per se.

Zeina Bushnaq provided a very positive update on her PhD survey of pouchees, ileostomists and potential pouchees to identify opportunities for greater emotional and psychological support. Thanks to the help of the Red Lion Group, Zeina now has 84 completed surveys from pouchees, which is a fantastic total. She thanked everyone who had taken the time to complete The survey.

David Davies, RLG Chairman, announced that he was in discussions with a company wanting to run a clinical trial of a new biologic drug to treat recurrent pouchitis. He will be speaking with them later this week and will hope to be advertising the trial on the RLG website and with emails to members and through social media outlets once the trial was up and running.

Finally, David raised a glass to wish everyone a healthy and happy Christmas and a Happy New Year, in spite of the continuing covid restrictions.

The next online pouch forum chat night will be Monday 4 January 2021 starting at 8pm. Please click “Register Now” link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.

David Davies
RLG Chairman

Re–Published on 01 December 2020

Register now for next Pouch Open Forum on 7 December 2020

The latest in the series of Red Lion Group Pouch Support chat forums via the wonders of zoom technology was held on Monday evening, 2 nd November. Attracting some 30 attendees, the evening was another riveting and thoroughly enjoyable opportunity for pouchees and potential pouchees to talk about common problems and challenges and for the more experienced pouchees to share their tips and recommendations to help the less experienced pouchees. The evening was choreographed by Gary Bronziet, our very own IT guru (and Membership Secretary), with Theresa Parr (Minutes Secretary) and Christopher Browne (Editor in Chief of the excellent Roar! publication) chairing the female and male breakout groups respectively.

The small but perfectly formed male group enjoyed an excellent discussion, including a variety of topics such as cuffitis, the diagnosis of crohns versus ulcerative colitis, prostate gland examinations, symptoms of blockage and the influence of adhesions in causing blockages to be more likely to occur, the foods that cause blockages and cures. We welcomed a new pouchee of only 6 weeks, who was keen to hear personal stories and frustrations to reassure themselves that they were doing OK (indeed he is doing very well). The ladies group included two RLG members who were the 8^th and 9^thpeople respectively in the UK to have their pouches created by Sir Alan Parks at St Marks some 43 years ago!! A very warm welcome was extended as you can imagine.

The ladies session covered topics suggested by the attendees, including loperamide usage, diet, skin care, mental health issues, lifting and exercise and blockages. Regarding lifting, one of the attendees, Linda, provided the following information after the event:

Professor Bo Shen recommended in his book “Pouchitis and ileal pouch disorders” that pouchees “…should not lift more than 20-25lbs as well as avoiding any postures during exercise that may assert pressure or torsion at certain sites such as tip of the pouch, the anastomosis site and previous stoma site.”

On the topic of mental health, Linda also commented that her local hospital ran a six-week (one night each week) course on chronic stress management, which was found to be beneficial. Another potential topic for the next forum.

In summing up, Christopher Browne appealed for more personal stories of mental health in pouchees – an opportunity to share your own story (anonymously or not, as you wish) in an article Christopher is writing for the next edition of Roar! If you have a story to tell and would like to submit, then please send to Christopher at cbrowne@brownmedia.co.uk.

Finally, David Davies (RLG Chairman) extended thanks from a PhD student, Zeina Bushnaq, who is conducting a survey of mental health and psychological support for pouchees during their surgical journey. Thanks to a mention during a previous forum and other posts on social media she has managed to recruit 74 pouchees for the survey, an excellent response for which she is very grateful. Thank you to all who took part. We will hope to publish the outcomes in due course on the RLG website.

These RLG monthly chat forums are very well appreciated by all attendees and have been a noteable highlight amidst the general covid gloom. In particular, for pouchees who are based in more remote regions and for whom there isn’t ready access to other pouchees. Hopefully these sessions are helping those people to feel less isolated.

The next Red Lion Group zoom chat will take place on Monday 7 December starting at 8pm. Please click Register Now link below to register and reserve your place and please note that the dial in instructions will be sent to you within 48 hours of the event start.

David Davies

RLG Chairman

Re–Published on 25 October 2020

Registration is now open for our next Open Zoom Forum on Monday 2 November at 8:00 pm. Open to all pouchees, prospective pouchees, family and friends – we split into ladies and gentlemens break-out groups so you can talk openly and share your experiences with other pouchees.

A quote from an attendee after recent meeting –

“Thank you – I did enjoy the session. I’d forgotten that in certain circles I was perfectly normal!“

You can register for the next forum on Monday 2 November at 8:00 pm by clicking the register now button below.

(If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 2 November 2020).

Read about previous sessions and examples of topics discussed below.

Re–Published on 23 August 2020 – David Davies Chairman Red Lion Group

The second in the series of zoom get togethers for pouchees took place on Monday 3 August at 8pm. Organised by the Red Lion Group, the forum offers the opportunity for pouchees, their family and friends to get together via the wonders of zoom to discuss common challenges and learn from each other’s experience in dealing with pouch-related issues. One of the challenges for the organisers is to ensure that people have the chance to be heard and we therefore divided the audience into male and female sub-groups for the discussions, then re-grouped for a summary session at the end.

Once again, the event attracted a good number of pouchees and everyone contributed in a lively discussion of various pouch-related issues, including:

How to avoid (or reduce) night time BMs (and therefore reduce fatigue from losing sleep):
- Use of a catheter to achieve complete emptying before bed
- Medications and their use to prevent/reduce nightime BMs. Windeeze was one suggestion to reduce gas in the pouch
- Alternative therapies – one person recommended a few drops of CBD oil tincture under the tongue before bed time.
Diet and the best diets to use to achieve weight loss along with a healthy pouch
- The benefits of the MacDonalds diet for pouchees!
The St Marks pouch nurses and how to contact them
Probiotics and the high cost of VSL#3. Many people use probiotics and feel they help keep their pouches healthy. Uchu Mead – Head of Pharmacy at St Marks Hospital – commented at an Information Day in 2019 that the best time to use VSL#3 was just after a course of antibiotics for pouchitis, when the antibiotics have disrupted the pouch bacterial community. However, a number of the attendees use VSL#3 on a daily basis, which is expensive. VSL#3 is not on the prescribers list, but pouchitis is now a recognised condition which GPs can find on the NHS website.
It was pointed out that at the Information Day it was mentioned that the probiotic called Vivomixx, claims to be the only product that uses the original VSL#3 formula, and the current product called VSL#3 cannot use the original formula. You can read about this interesting patent battle on Google if you are interested!

Huge thanks to Theresa Parr and Christopher Browne for moderating the sessions and to Gary Bronziet for arranging the facility and pressing all the right buttons. And thank you to all who took time out to join the event and contribute to the lively discussions.

You can register for the next forum on Monday 7 September at 8:00 pm by clicking the register now button below.

Published on 5 July 2020.

First Red Lion Group Zoom Forum “a great success”!

The recent “Zoom into Summer” series of presentations was a great success and demonstrated the power of the Zoom platform to facilitate real time, “face to face” interactions. So much so, that those clever people at Red Lion Group decided to trial a new concept; a zoom “coffee morning” to mimic the breakout discussion sessions that have proved so popular at the Information Days in the past. The first of the “Zoom into RLG Forum” took place on Thursday 2 July and was attended by 20 RLG members. The group was divided equally into men and women, who discussed pouch-related issues in their respective groups for 40 minutes or so and then came together to compare the topics. The two facilitators were RLG stalwarts Susan Burrows and Christopher Browne and our thanks to them for their inspired leadership.

Representative screen image of Zoom meeting

The event was a resounding success. Topics discussed by the men included seepage, the use of pads available on prescription, eating meals early in the day to prevent night time BMs, use of loperamide for the same, how to mask the smell of BMs, key hole surgery, support for remote pouchees (from Fife!), dysfunctional pouches, feeling of incomplete emptying, catheters and, amidst some hilarity, the challenge of weeing without poohing whilst standing up when on a night out.

Meanwhile, the ladies discussed topics as varied as sore bottoms, pouchitis, the use of catheters, the question of whether or not to choose a pouch operation compared with a permanent ileostomy and the ingenious suggestion of a motion-sensitive night light to illuminate the route to the toilet when a pouchee needs to go in the night in an unfamiliar place.

We pouchees are united by a common journey and shared experiences which are unique to our circumstance. There is reassurance and comfort in coming together to discuss these common challenges and issues and especially to find humour in adversity when the occasional “slip up” occurs. The Zoom platform allows people to “meet” on video calls and talk as a group as if we were in the same room, to effectively mimic the Information Day breakouts.

The event was a great success with attendees unanimously voting for another such event in one month time. The next forum will take place during the evening of Monday 3^rd August, starting at 8pm. To register to attend the forum, click on the register now button below. If you have previously registered for one or more of our Zoom into summer webcasts, you will receive a message saying you are already subscribed. Follow the instructions to Update your preferences and tick the box to say that that you would like to attend the forum on 3rd August 2020.

Thanks again to the facilitators, Susan and Christopher, to Gary Bronziet for providing the technical input and to all the delegates who kindly joined this first event.

David Davies

Chairman – Red Lion Group

We look forward to receiving your registration and seeing you at the Forum. You will be sent the Zoom invitation in due course.

Stories

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

News

It’s all in the mind…

Just how fit are you? When did you last do a few pre-breakfast press-ups? Or a couple of bracing laps of the local park perhaps? Last week, last year – or never perhaps.

And how often do you think about your mental fitness? It may not be so obvious, but however strong, skilful, athletic or flexible you are, it’s your calmness and determination that guide you and help you to perform your daily activities ie it’s all in the mind!

Mental health is such a vital and fascinating subject, that we will be investigating it further in the December Roar! with contributions from two leading psychiatrists, case studies from doctors, surgeons, healthcare professionals and, of course, other pouch-owners.

Would you like to add your own experiences of mental health to this article? You can do this by sending your own examples, ideas and views in confidence – and anonymously if you prefer – to Christopher Browne, Roar! Editor, at cbrowne@brownemedia.co.uk.

It’s quite a heady subject after all!

News

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.

News

Would you like to join our Committee ?

We are looking for new volunteers to join the Board of Trustees at Red Lion Group.

Would you like to join this small team of enthusiastic and friendly volunteers? If so we would love to hear from you. Please read the information below and write to me at dbd60@hotmail.com if you would like to know more.

The charity

RLG is a small charity run by volunteer Trustees, with a shared passion/ mandate to provide support, advice and reassurance to people who have – or are thinking of having – an internal pouch, plus their friends and family. Our membership is currently around 350 people and we are seeking to increase this to 500 over the next 2 years. We are a registered charity and have a commitment to good governance and compliance.

Commitment

We are looking for people who are happy to work as part of a team on various administrative tasks to deliver information and advice to our members. The time commitment is not onerous, perhaps 2-4 hours per month on average. Up until now we have had one face to face meeting a year, typically in London and an opportunity to meet face to face at the Information Day (which takes place at St Mark’s Hospital in Spring time). All other activities can be achieved from the comfort of your own home.

During COVID, we have used online meeting facilities (zoom) to conduct meetings and these have been very successful. We have between 3 and 6 team telecons per year.

Key attributes are:

Enthusiasm to support our members
Happy to work with other Trustees as part of a valued, small team
Ideally (but not essential), with skills/instincts in one or more of the following: Fundraising, member enrolment, IT, project management, process design, social media, marketing
With the time to devote to this role (2-5 hours per month)
Willing and able to help the charity develop and improve what we do
You do not need to have undergone the surgical procedure to be a trustee. Many of our members are family and friends of “pouchees” and we have other non-pouchees amongst the trustees
We welcome people from diverse backgrounds

Participation is voluntary, although we do reimburse expenses where necessary.

We hope you will be inspired to join us!

David Davies

RLG Chairman

News

Summer 2020 edition of ROAR! now available

The Red Lion Group publishes an informative magazine called ROAR! two or three times a year and the latest edition has just been published.

Members should have received this (Issue 59: Summer 2020) in the post.

It is also available to download from the website, as well as ROAR! archives going all the way back to Issue 1, published in 1994.

Only members have access to ROAR! on the website. Please contact us to request the password if you don’t have it.

If you are not already a member, why not join by clicking on the link below!

Join Now

News

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

News

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.

Join Now

Now Breathe!

RLG donates to St. Mark’s Hospital Foundation

Make your first New Year Resolution to attend RLG…

Register now for next Pouch Open Forum on 7 December 2020

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

It’s all in the mind…

Mental health support for pouchees and ileostomists – survey

Would you like to join our Committee ?

The charity

Commitment

Summer 2020 edition of ROAR! now available

P-word problems? Why not try a little yoghurt

Why Zoey wears her pouch with pride

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The Red Lion Group is a UK registered charity number 1068124