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The COVID crisis has accelerated our movement to modern…

The COVID crisis has accelerated our movement to modern virtual technology.

One of the casualties of the COVID crisis has been our annual information day normally hosted at St. Mark’s Hospital which previously had been the highlight of the Red Lion Group calendar. In 2020, when it became obvious that an in-person event would not be possible, it occurred to me that this would be a perfect opportunity to utilise the Zoom technology to replace the information day with a series of “Virtual events” – and hence our Zoom into Summer Series was launched for the summer of 2020. In fact, this technology was not that new. I had been using equivalent platforms such as WebEx and GoToMeeting for many years in my professional capacity – but suddenly this virtual meeting technology had become mainstream, and “zooming” and dare I say, “You’re on MUTE!” also became part of our everyday vocabulary!

In fact, using this virtual platform made the logistics of hosting this event much simpler. No longer did we have to try to coordinate the availability of the potential speakers around one particular Saturday. Separate events could be scheduled at the convenience of each speaker. The Ladies and Gentleman’s “workshops” that previously ended the day at the Information Day were replaced with regular monthly Open Zoom Forums. However, one of the biggest advantages of the “Virtual format” has been the accessibility of the events irrespective of geographic location. We have virtual attendees from all around the UK including Wales, Scotland and Ireland, from Europe (Notably France and Portugal) and we also have some regular attendees from the USA, East and West Coast.

Although it is our intention to host an in-person Information Day at the earliest opportunity (hopefully in 2022) it is also intended that we will continue with our virtual events for the foreseeable future.

The Red Lion Group Website has been significantly improved together with a new easy to remember URL

You have probably noticed that our website was significantly re-vamped a couple of years ago. Thanks to D&AC who put together the new framework. This has been a major leap forward for us and raised our profile tremendously. The new site at pouchsupport.org is at the very top of the Google search results when people are searching for pouch support related information. The available resources are continually expanding making our site the “go to” place for pouch related information and the number of visitors continues to increase – not just from the UK but from around the globe.

Another step was to link our website with the most active Facebook discussion group J-Pouch Support (UK Specific). This group has over 1,000 members and is very active on a daily basis. Visitors can read the activity on this group directly from the FORUM section of our website. See https://pouchsupport.org/forum . (As it is a closed group, to contribute to the group – you need to submit a join request on Facebook).

The membership process has been streamlined and our membership continues to grow

As part of the modernisation, we have also streamlined the membership application process. Visitors can now submit a membership application directly from the website. (See pouchsupport.org/join). We have also registered with a charitable payment portal called CAF (Charity Aid Foundation) which simplifies the fee payment and donation process.

We recently also introduced a unqiue “Can’t Wait” membership card – the only such card designed specifically for pouchees. One side is a traditional “Can’t Wait to use a Loo” message in various languages, and the reverse side is a Medic Alert which has an explanation of our condition together with a URL and a QR code that links directly to a more detailed medic alert page on our website (see pouchsupport.org/medic )

Our membership numbers are on the rise, and it is likely that this is very much related to a combination of the steps we have taken as outlined above – specifically the website, the zoom meetings, and the membership card. As a result, in 2021 to date, we added 88 new members!

Whereas the Red Lion Group was originally founded as a St. Mark’s centric support group, you can see from the picture below the geographic spread of our current membership.

We appreciate your continued support and remind you that the Red Lion Group is run entirely by volunteers. Membership fees cover our expenses (which are minimal) and surplus funds are donated to the St. Mark’s Hospital Foundation. We recently made a donation of £5,000 to the Foundation. (See https://pouchsupport.org/rlg-donates-5000-for-pouch-related-research/).

Best wishes & Seasons Greetings from

Gary Bronziet
Membership Secretary and IT
membership@pouchsupport.org

Recommended annual blood tests for j-pouch patients

A new document has been added to the RESOURCES section of this website and can also be downloaded below.

It describes the recommended annual blood tests for j-pouch patients that St. Mark’s j-pouch patients usually have done as part of their annual checkup at the hospital.

If you no longer have follow ups at St. Mark’s or are not a patient there, then you can request that your G.P. does these as part of your Annual Long Term Condition review.

Blood tests explained

Download Now!2409 Downloads

Check out our Resources page for other useful documents and videos.

St. Mark’s Oral Rehydration Solution (ORS)

Are you getting enough hydration? (How to make St. Mark’s solution)

If you have a J Pouch, it is important to ensure that you are getting adequate and appropriate hydration. For many years, St. Mark’s has recommended a particular formulation for pouchees and ostomates. In this article we explain how to make the St. Mark’s hydration solution.

(Updated 28 December 2022)

St. Mark’s solution is a potassium-free glucose electrolyte mix commonly referred to as an oral rehydration solution (ORS). It is used for the management of short bowel syndrome caused by surgical removal or congenital disease of the small intestine. St. Mark’s solution may be recommended by your doctor or dietitian if you have a high pouch output.

Due to this complex condition you may not be able to absorb enough water, vitamins, minerals, protein, fat, calories and other nutrients from food whilst on a normal diet. If you are not absorbing enough fluid you may experience a high output from your stoma.

If your output is high and you are losing more than 1500mL per day from your pouch, you are at a greater risk of becoming dehydrated. To prevent dehydration you may be advised to drink 1 to 3 litres of ORS solution, sipped throughout the day.

How to make St. Mark’s solution

All ingredients for St. Mark’s solution can be bought from supermarkets or pharmacies for less than a single prescription charge. The ingredients need to be dissolved in 1 litre of cold tap water The prescribed amount should be sipped throughout the day The solution must be thrown away within 24 hours and a fresh solution should be prepared the following day . The solution may taste salty but can be improved by:

being stored in the fridge before you drink it, so it is chilled being frozen and taken as slush ,
being sipped through a straw ,
adding a small amount of squash, fruit juice or cordial.

These adjustments are best added while making up the solution rather than adding to each glass, to ensure the salt content remains high

Ingredients for 1 litre batch

Glucose powder (20g – 6 teaspoons)
Table salt (sodium chloride) 3.5g – 1 level 5ml. tea spoon
Sodium bicarbonate or sodium citrate 2.5g – heaped 2.5ml teaspoon

Managing your pouch output

Drinking too much ordinary fluid will increase your pouch output and make you dehydrated. When it is hot, we sweat and lose salt and fluid from the body. In this situation people with a high pouch output are more likely to get dehydrated and you may find you need to drink more electrolyte mix to replace these losses.

Speak to your doctor or dietitian for advice on increasing the amount of daily St. Mark’s solution you are drinking.

You can reduce your pouch output by:

Limiting the amount of ordinary fluids that you drink (for example fruit juice, squash, fizzy drinks, water, tea, coffee) to about 1 litre (about 6 cups per day)
Drinking a rehydration solution like St. Mark’s solution electrolyte mix to help your body absorb fluid and salt
Increasing your salt intake
Reducing your fibre intake

If you need more information, please talk to your doctor, specialist nurse or pharmacist.

Mind over matter

Mind over matter

They say buying a property, getting married and having an operation are the three most important events in our lives. But how many of us actually prepare mentally for these experiences? Roar! editor Christopher Browne looks at how a group of pouchees dealt with their illnesses before, during and after surgery

Just how fit are you? Or is fitness rather low on your list of priorities?

When faced with this question, I have no doubt most of you, like me, instantly think of physical fitness ie activities such as a morning or evening run, a swim or a bike ride, some regular indoor exercises perhaps or a game of tennis or golf.

Few – if any of us – think of mental fitness.

Yet our mental approach is as important to our well-being as our physical one. Some would say more so. For how can you perform an everyday task without putting your mind to it? The answer is: “You can’t”.

The same applies to illness. How can you cope with a debilitating condition like ulcerative colitis or FAP without trying to control or combat it? Once again the answer is: “You can’t”.

Apart from pain and emotional distress, there’s another less predictable element that can help or hinder us when we are unwell and that is our psychological make-up or to use a more commonly used phrase “mind over matter”.

But then how many of us can truly say they consciously thought about their mental health and how to apply it when they became ill and faced surgery?

Once again, I think the answer is very few of us (with one honourable exception as you’ll see in the case studies below). There is no doubt that – like a football, rugby or hockey manager or any other team sport for that matter – forging a plan or a strategy can certainly help us to cope and finally recover from operations and serious illness.

I hope this Roar! report will help you find out just how mentally fit or unfit you are. It may even encourage you to write to Roar! and give us your own personal experiences of mental health before, during and after operations.

We’ll start with an initiative by a UK-based hospital which set up a series of mental health workshops for patients with Crohn’s disease and ulcerative colitis.

The courses, which were run by Beaumont Hospital in Dublin, put the patient at the centre of their own care and thus encourage them to think about their lifestyles, thoughts, moods and also the behaviours that make up who they are.

Referred to as self-management, this approach to mental health includes making choices to improve your health such as being more active, eating more healthily and using self-care rituals.

It also helps you cope with important tasks like making sure you take the correct medication for your condition, monitoring the symptoms of your own illness, coping with the emotional aspects of your condition and finally communicating with healthcare professionals.

RLG member Linda Tutty who joined one of the courses says: “There were 10 of us and each of us made weekly action plans, shared our experiences, and helped each other solve problems we faced in creating and carrying out our individual programmes.”

As Linda points out: “I met wonderful people with a variety of different health conditions, and this made me feel I was not alone which helped me emotionally. It made me aware of my habits and gave me the tools to make positive changes.”

The key message of the courses says Linda was “to learn to speak more openly about my condition – it was wonderfully comfortable being with other people with similar conditions.

“The other thing I focused on was to set achievable targets or goals for the week ahead and once you have reached your target there is a great sense of accomplishment, no matter how small your targets may be,” says Linda.

She also learnt the value of relaxation techniques. “We were taught and practised breathing exercises and visualisation techniques. I absolutely recommend that all patients who have any chronic condition avail of a self-management programme if possible.” [See RLG committee member and former chartered physiotherapist Theresa Parr’s breathing and relaxation exercises also on this website here ]

You can also order a copy of the course’s handbook “Self-management of Long-term Health Conditions” by Kate Lorig from www.amazon.co.uk (£2.98).

One person who has certainly had more than her fair share of illness, surgery and operations in the past four years is Red Lion Group member Ruth Cox.

In 2016 Ruth had emergency surgery after a chronic spell of uc and says that when doctors told her about her surgery “I was completely shell-shocked. I can remember feeling numb and as if I was in a dream and this wasn’t real.”

Then after her initial stoma operation Ruth says she was “quite determined to get back to my old self as soon as possible and came out of hospital a week after surgery.”

But when she went back to hospital to have her J-pouch fitted a few months later, she discovered she had breast cancer. After the initial shock she was told that the cancer was at an early stage and after an operation to remove the tumour and four weeks’ radiotherapy once again she started to make plans to have her J-pouch op.

Until setback number two. Soon afterwards Ruth was diagnosed with enteropathic arthritis which is linked to uc. Painful and debilitating particularly in her feet and ankles, it meant Ruth had to use a wheelchair and crutches to get around and rely on her family for everyday tasks for six months. Eventually she saw a consultant who prescribed two drugs, Methotrexate and Humira, “and suddenly I was pain-free and walking around like normal again”.

It meant Ruth was soon fit enough to have her closure which went ahead in April 2019. “My personal journey to a J-pouch has had a huge impact on me and has changed my perspective on life a lot. It’s taken me much longer to heal mentally than physically and it can be a slow process,” Ruth says now.

“I’ve tried mindfulness, spoken to counsellors and had lots of support from family and friends and in the end, time helped a lot. Luckily, I’m quite a resilient person and have always tried to stay positive and not let life events get me down.

“The way I look at it is that bad things will happen in life and you make the choice in how you deal with it. You can spend the rest of your life feeling sorry for yourself or you can make the best of what you’ve got now and look for the good things in life.

“I’m pretty sure that my experiences over the last few years have changed me as a person and I know that I appreciate the little things in life more now. I live for today and try to regularly tell people that I love them and appreciate them. Until you experience some adversity in life, you never know how strong you can be,” says Ruth.

RLG committee member Michelle Martin devised her own personal recovery plan before, during and after her pouch surgery at Broomfield Hospital, Chelmsford, Essex, nearly two years ago.

“Within just a few weeks, I had gone from having an upset stomach to having my colon removed and living with a stoma, which I found mentally and physically challenging. My family and friends didn’t think I would cope and, initially, I wasn’t too sure myself. I couldn’t stand to look at my stoma or change the bag. I just wanted to be left alone,” says the 42-year-old.

“However, as the days and weeks went by, I started to feel better,” says Michelle. “I had spent most of my life feeling tired, having headaches, so feeling well was a novelty. I knew I was going to need more operations, and I also knew this would have a mental and physical impact on me.”

She decided exercise was the key to her recovery and would help her prepare for her next operation. “I knew being fit and healthy would help me recover but it was also essential for my mental well-being,” she says.

Eight weeks after being discharged from hospital she started going to the gym. “I took it easy to start with, focusing mainly on hydrotherapy. It did mean putting on a swimming costume, but as luck would have it, I had lost so much weight, my swimming costume could easily accommodate my bag!”

Michelle also took up yoga to help her relax. “Getting fit gave me something to focus on and helped me feel in control. I was fighting back and I was going to be fitter and healthier than I had been in a long time. I had a firm belief that I was the key to my rehabilitation, the surgeons saved my life, my consultant was putting me back together, but I had a responsibility to take this opportunity and do my part in improving the outcomes.

Michelle says keeping fit “was one of the ways I looked after my mental health and I feel for me personally was the most beneficial to my recovery.”

The other factor, she says, was making sure she continued to do what she loved, especially going on holiday. “So after each operation I planned a trip away, something positive to look forward to.”

However post-surgery she faced a statutory 10-week wait for travel cover from her insurer. “I made my mind up that after that 10 weeks I would be on a flight, be it a city break or chilling out on a beach. Obviously the beach holiday won through and that helped me relax, feel normal, and recover!” she says.

Michelle’s positivity is palpable. “I have been exceptionally lucky so far, I am really happy with my pouch, and my quality of life has improved. I think my positive outcomes are due to having the right people around me. Knowing I had a brilliant surgeon, stoma nurses that looked after me both physically and emotionally, a supportive partner and family, great friends and a good employer who allowed me time to recover.

“That combined with keeping fit and having a clear goal, enabled me to get through a very difficult period in my life,” she says.

Another important event Michelle says helped her recovery was a conversation with a counsellor she knew. “We were talking about how people react to traumas and what influences our reactions. Interestingly he said the actual trauma is just one aspect of how we are feeling when we go through a life-changing experience. We are also heavily influenced by our past life, our relationships, how we feel about ourselves both emotionally and physically and the circumstances which led us to this point in our lives,” she says.

As Michelle points out: “What I took from this conversation was that we focus so much on the surgery and our illness that we forget to take a holistic view of our life. There is a need to look beyond our health issues and focus on what else shapes us and how we can manage these to improve both our physical and mental well-being.“

Art as therapy

One way to help your recovery from an illness or a difficult episode is to take up an interest. The textbook term is “occupational therapy”. Just ask RLG member Christine Lawton who turned to painting to help her after her pouch surgery. “Although I am not a psychologist, I know it has been proven that painting and drawing are extremely good mental therapy. I am not surprised because when you are drawing or painting, you are looking at a subject with different eyes and you become completely engrossed away from the everyday hassles of life.

“It is invigorating to express mood and let out our pent-up feelings. Colours can also have a beneficial effect on your moods and morale and brighten up your day. It doesn’t matter what the result is: it is the journey that counts,” she says.

“I’ve found painting and art a wonderful way to relax during a difficult period and it has been a real boon and has also helped me to pass the time quicker during the lockdown.”

Two of Christine Lawton’s recent animal portraits: a cockapoo and her local vicar’s cat

A surgeon’s view

Finally, who better to have the last word on mental health than the lead colorectal surgeon at St Mark’s and the patron of the Red Lion Group Janindra Warusitavarne.

“When surgery is needed for ulcerative colitis I have noticed that different people have different reactions. Much of the decision to proceed to surgery depends on the quality of life of the individual and how the disease affects that quality of life,’ Janindra told Roar!.

“For an individual where there is a risk of cancer and surgery is proposed but the disease is well-controlled, trading off good function for potentially worse bowel function can be a difficult decision. On some occasions, where the disease becomes acutely severe, the decision to have surgery or not may be taken away from the individual when emergency surgery is needed. In most situations the surgery is planned for when there are no further medical options,” says the consultant surgeon.

“The most important point to consider when making the decision to have surgery in ulcerative colitis is that removal of the colon or rectum removes the disease as well but whether an individual chooses a J-pouch or a permanent ileostomy depends on the perceived quality of life gain. In this regard, the mental health of an individual is vitally important.

“Often when surgery is considered, an individual can be tired, in pain and feeling generally ‘unwell’. Post-operatively when the individual feels better as the disease is not causing sickness, decision-making can be a lot clearer. It is at this time the decisions regarding stoma and J-pouch should be made.

“At this stage one can decide if the stoma is something they can live with or if they wish to proceed to J-pouch surgery. Making a decision when one is relatively well means that a more objective assessment can be made. When the stress of the disease and its effects on mental health have been removed more relevant decisions can be made.

One way to aid this vital decision is pre-operative counselling, says Janindra. “Post-operatively, the success or otherwise of the J-pouch varies according to the mindset of an individual. This is why pre-operative counselling is so important as it helps to understand the nature and consequences of surgery. When this aspect is well understood an individual having a J-pouch is better able to understand the inner working of the pouch and this can help with overall quality of life and well-being.

“When a pouch does not function appropriately, there can be many reasons for this and having the appropriate team with the appropriate support is essential. When the hope of a quality of life improvement is resting on surgery then any change in this expectation has to be managed appropriately.

“It is under these circumstances that managing the mental health of an individual is just as important as dealing with the clinical issues. This requires understanding on the part of the clinical team and reassurance to the individual.

“The J-pouch is for quality of life and mental well-being is vital for quality of life,” adds Janindra.

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 printed Copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

Join Now

When I visited the home of the red lion

Holidays – remember them? RLG member Susan Burrows certainly does and writes vividly and entertainingly about her trips in Roar! magazine. Here’s her account of a memorable visit to Kenya

Shortly before the first lockdown I had a once-in-a-lifetime trip to the beautiful African country of Kenya.

We (I and my group of 16 intrepid travellers) spent the first two days of our visit in Nairobi, the country’s sprawling, bustling capital where we discovered that much of the city’s land is owned by the famous Maasai, a semi-nomadic tribe based in Kenya and Tanzania.

Once known as fearsome hunters and fighters, the Maasai’s main activities today are herding and raising cattle, goats and sheep. It meant that at busy road junctions we often found ourselves jostling with herds of cattle which were being driven by young boys from the tribe.

Another feature of Nairobi is that there are no traffic lights and getting across junctions and around roundabouts was, to say the least, haphazard. I think that at times we all had our eyes shut – much to the amusement of our driver.

We also visited the Daphne Sheldrick Animal Orphanage – named after the pioneering conservationist and author who rescued, reared and reintegrated orphaned elephants into the wild for more than 30 years. Here the young elephants feed in mini-herds, coming back three times a day for milk feeding and, in the hot weather, mud baths.

Out of Africa

Another highlight was a visit to the Karen Blixen Museum – founded by the Danish author of the same name – where both the house and garden were made famous by the film “Out of Africa” which was based on the book she wrote.

On the third day we flew in a small private plane to the Maasai Mara [the word ‘Mara’ comes from the local dialect ‘Maa’ and means spotted], a huge game reserve in the Kenyan town of Narok. We stayed in a lodge on the edge of the Mara River – a favourite spot for hippopotami – and until then I didn’t realise how noisy they can be particularly at daybreak.

The reserve is 1,500 square kilometres of broad, biscuit-coloured savannah (tropical grassland) and plays host to the most spectacular array of birds and animals. At times the vast landscape is dotted with shadows from small clouds which scud across the vast sky. It is adjacent to the Serengeti, another famous national park, and for five days we enjoyed the sights and sounds of the Maasai Mara on early morning, late afternoon and full-day game-viewing excursions.

And we saw so much – elephants, hippopotami, several prides of lions, a cheetah fast asleep under a tree, a leopard and her cub who were notoriously shy but made their way around our vehicle to get to the other side of the track (see photo). There were zebras, giraffes, warthogs, cape buffaloes and, after many hours of searching, one of the 18 rhinoceri that still wander the Maasai Mara.

The list is seemingly endless, but I must mention that we also saw the tail end of the wildebeest migration – a fantastic spectacle as the animals ran down towards the river to rest before moving on to the Serengeti.

It takes two to tango: A pair of secretary birds

Accompanied by an experienced Maasai guide we visited a typical local village. It was built along traditional lines complete with a cattle enclosure, outer palisade and mud and cow dung huts which are all built by the women.

We also discovered that cattle are a very important commodity, particularly if buying another wife!

Our five days on the Mara ended with a visit to a school. The school was supported by the lodge where we stayed and provides the portable water filtration systems to cleanse the local drinking water of the bacteria which causes many diseases. The children were on holiday but a number returned to tell us about their school life. They walk many miles a day to and from school but their enthusiasm for school life was uplifting.

Health and safety

During the visit we took malaria tablets. It was not the first time that I had taken them, and I had no adverse reactions to them. We drank bottled water as well as using it to clean our teeth. The water is clean but different chemicals are used to cleanse it and this can cause upset stomachs. I think that this applies in numerous countries. The toilets in the lodge were excellent and there was constant running water.

When we were on the game drives there were no toilets, but the half-day drives were only about three hours long and the full-day drive probably around five hours. During the latter we stopped for a breakfast picnic and two of the vehicles were parked a short distance away and used to shield people who needed to use the facilities!

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

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.

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.

The climber’s glossary:

¹A pitch is a rope length (50-80m)

²The name of a tour in climbers’ language

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

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

⁵The crux is the hardest section of a route

⁶To ‘bag’ a route means to finish it

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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.

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

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.

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