Stories Archives

J Pouch Videos on YouTube Channel

For a number of years, the Red Lion Group has been building up an extensive J Pouch video channel on YouTube.( See YouTube.com/@PouchSupport )

These feature some of the most eminent experts in the field of pouch surgery and support on topics of particular interest to pouchees or those considering pouch surgery.

Many of these videos have been recorded at the Red Lion Group Information Days hosted at St. Mark’s Hospital and more recently over Zoom.

There are links to the various videos from relevant pages on the Red Lion Group web site (pouchsupport.org) in particular from the Resources Page. See pouchsupport.org/resources.

In addition, we have now added a direct link to the YouTube channel from the menu bar on the Pouch Support website. See below:-

PouchSupport.org Home Page showing new menu bar option

When you link to the YouTube Channel, you can browse all of the Videos sorted by Most Recent or Most Popular.

Please support the Red Lion Group by becoming a member at pouchsupport.org/join

Living with J-Pouch or Stoma and affect on mental…

Living with a J-Pouch or Stoma and affect on mental health

A recent mental health survey of J-pouch and ileostomists by the psychologist Zeina Bushnaq has found that most of those who took part showed higher anxiety levels, bouts of depression and greater body dissatisfaction than the average man- or woman-in-the-street. Despite this most participants reported a generally good quality of life.

**Report author: Psychologist Zeina Bushnaq**

The reasons are probably obvious. All the patients in the survey had been through bowel surgery which, as we all know, can be a significant period in our lives. Half of the 152 respondees, or 74, had pouches and an average age of 49 while the other 78 were ileostomists (average age 42).

All came from the RLG and Crohn’s & Colitis UK support groups, the GetYourBellyOut and Purple Wings charities and a number of Facebook and Twitter users.

The survey – which Zeina ran as part of her PhD in counselling psychology at Surrey-based Roehampton University – was particularly timely as the latest statistics show the number of people in the UK with inflammatory bowel disease (IBD) is continuing to rise.

“While the number of people with IBD, ileostomies and ileo pouches has increased over the past few years, research has mainly focused on the physical and medical aspects of these conditions instead of the emotional and psychological aspects. However as IBD diagnoses increase, so do the number of individuals experiencing psychological difficulties, specifically anxiety and depression (low mood),” said Zeina.

Her overview was that the survey’s participants showed high levels of anxiety, low mood (depression) – not mood swings, as that is quite different from low mood/depression – high levels of body image dissatisfaction and held negative attitudes towards mental health services.

However the survey’s aim, she said, was to “help researchers and clinicians better understand people’s emotional and psychological experiences after surgery. This is important because it provides critical information that clinicians need to inform their clinic practices.

“It also means clinicians can make sure people receive the appropriate psychological interventions and that their treatment is tailored to meet people’s emotional needs,” she said.

So what then were the survey’s key findings and what were the main differences between patients with pouches and ileostomists?

“When it came to coping strategies, the only difference that was found was that the pouch group appeared to use problem-focused coping strategies more than the ileostomists,” said Zeina.

“These strategies are used when people try to change the source of their stress and usually take the form of planning or else seeking professional help from doctors or nurses.” She said older participants tended to use these problem-focused strategies more often than younger ones.

Another key factor was the length of time that has passed since the patient has had their surgery. “The further in time from surgery, the more likely participants have time to adjust and cope – and therefore to use problem-focused strategies,” said Zeina.

And what were the recommended types of treatment? “Psychological interventions between the two groups may be different because each group experiences different difficulties, ie individuals with ileostomies may experience short-term complications with their stomas and individuals with ileal pouches may experience long-term complications of the pouch such as pouchitis,” she said.

“Tailoring psychological interventions may help address people’s specific emotional needs, thus improving their mental wellbeing, whilst also improving access to mental health services,” said Zeina.

The survey is believed to be the first of its kind to examine the differences between a wide range of psychological factors including low mood, anxiety, body image, attention, people’s beliefs, coping, help-seeking and attitudes towards therapy in individuals with ileostomies and ileoanal pouches, said Zeina.

“The results highlighted the importance of understanding people’s attitudes towards mental health services and the need to improve psychological training, healthcare pathways and access to mental health services,” she said.

Patient panel

St Mark’s Hospital has its own Psychological Medicine Unit (PMU) which provides consultation and training to its staff and some specialist input that is mainly for in-patients. Dr Sonya Frearson, consultant clinical psychologist and head of St Mark’s PMU, is currently conducting a needs assessment for St Mark’s Hospital with a view to seeking funding to expand services.

If the findings of Zeina’s research have prompted you to seek support with ways to improve living with your condition a good first step is to use the following link to refer yourself to your local NHS talking therapies service: https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies/

Or if you are interested in joining a patient panel to help with this treatment then please contact Sonya (using “patient panel” in the subject line) by email to lnwh-tr.psychology.pmu@nhs.net

Zeina Bushnaq: Biography

Zeina Bushnaq is a psychologist and recently completed a doctorate in counselling psychology at the Surrey-based University of Roehampton.

Born and raised in the Middle East, Zeina aims to continue her recent work and research in the IBD community and to help those who face problems or who may be struggling.

She has an MSc degree is social and applied psychology from the University of Kent and a BA in psychology from Canada’s Dalhousie University.

Michelle’s magic formula

RLG communications officer Michelle Martin has her own unique way of dealing with anxiety and stress. We’ll call it PMA – the positive mental approach

I work for a hospice, so when the UK went into lockdown I was one of the first members of staff to be sent home due to concerns over my health. We entered the lockdown just as I was celebrating one year of living with a pouch and by this point I was really enjoying life without my temporary stoma bag.

Then I found that after a year of lockdowns I had to regain my confidence in my pouch. I had become so used to being at home near a toilet that I had become nervous of big trips out.

This situation made me realise two key points:

There was nothing wrong with my pouch, it was my own anxiety that was holding me back. It was very easy for me to blame my condition but sometimes I needed to look beyond that.
How important it was to keep active and not retreat to the safety of my own home. It is very easy to stay at home and feel safe but that is not living.

I concluded very quickly that if I stayed at home I would lose touch with my friends, family and the world around me. I also had a spell of Covid and it set me thinking about my mental health. I decided that after being so ill I wasn’t prepared just to sit back. I wanted to live life.

Living with an autoimmune disease is always challenging but combining that with the worst pandemic in over 100 years just makes things that much more difficult. It is OK to find it stressful but the most important thing is to seek help and support if it is preventing you from living the life you want. You have been through so much you deserve to be happy and to live well.

What a refreshing response, Michelle. It’s an approach that all pouchees – with or without Covid – would do well to follow.

Christopher Browne
ROAR! Editor

A version of this article first appeared in ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994.

See pouchsupport.org/join for further information.

Dietary advice for J-Pouch

Dietary advice for J-Pouch
Eating your way to rude, good health

Rest and relaxation are vital aids to recovery after major surgery – but then there’s diet, says Christopher Browne

Glance through any tabloid newspaper or popular weekly magazine and one of the hottest topics you’ll find is dieting. Most of these diets aim to make you feel good about yourself, slimmer and more svelte-looking (both men and women).

And why not indeed! But dieting is not just a way to lose weight. Your diet and what you choose to eat and drink is a major priority when you are recovering from an operation. Your body needs sustenance, essential minerals, salts and vitamins to help you grow stronger and recover your former health.

Some of us were lucky enough to see a recent webcast about healthy eating by Gabriela Poufou, lead IBD dietitian at St Mark’s Hospital – See below for recording.

Gabriela Poufou – Healthy Eating for patients with an internal pouch

[Note: You can download the slides to this webcast at the end of this post]

It was the best guide to diet and recovery I have ever seen – far more thorough than any newspaper guide. And I’ve got to admit that until recently – apart from taking care to avoid certain foods – I haven’t taken diet as seriously as I should. Neither, I might add, has it seemed to be a top priority in hospitals – apart from St Mark’s and Central Middlesex Hospitals perhaps – GPs’ surgeries and health clinics.

Until now. Pleasingly, this trend is changing. Surgeons, GPs, clinicians, nursing staff, patients and support groups are recognising the importance of diet and healthy eating and as an enthusiastic layman I make no apologies for drawing on the outstanding knowledge and advice Gabriela Poufou gave us in her webcast.

Let’s start with dehydration. If you have a pouch, do you remember how tired and thirsty you felt as the effects of the final closure of your pouch began to wear off. This is because you were dehydrated. The removal of your large bowel meant it could no longer act as a reservoir to reabsorb water and salts.

This major change in your bodily functions needs time to settle. So one of the best go-to remedies is St Mark’s Hospital’s electrolyte solution – six teaspoonfuls of glucose powder, a teaspoonful of salt and a dessertspoonful of bicarbonate of soda dissolved in a litre of water. Pouchees are advised to drink this solution at regular intervals during the day (There are other variations too which you can find on Google).

Gabriela Poufou encourages pouchees to continue this rehydration regime for at least two months as your body starts to heal after your final pouch closure.

Here are some of the other keys to post-surgical diet and recovery. [Please watch Gabriela’s video for a much fuller and more detailed version].

For the first few weeks dietitians recommend a soft, low-fibre diet, and, as you start to recover, move on to high protein and energy foods to encourage the wounds from the surgery to heal more quickly, reduce the risk of blockages and help prevent weight loss.

The diet Gabriela Pouchou and specialist dietitians recommend for pouchees after four to six weeks has many of the features of the NHS’s excellent Eatwell guide – Click HERE for NHS Eatwell Guide.

The foods recommended for pouchees after four to six weeks are: proteins – meat, fish, cheese, eggs, milk yogurt and pulses; carbohydrates including cereals, bread, rice, pasta and potato; healthy fats and calcium-rich dairy products – or lactose-free alternatives – including olive oil, milk puddings, yogurts and petit filou (small yogurts), custard and blancmanges.

After two months you’ll also be able to drink fluids such as water, tea and coffee (in moderation), unsweetened fruit juices and sugar-free squashes. If your loo output is up you may need to continue with an electrolyte mix 30-60 minutes before meals.

During the first few weeks post-surgery (and, in some cases, permanently) pouchees should avoid nuts, seeds, peas, raw vegetables, mushrooms, sweetcorn, celery, dried fruit and coconut. In time you may be able to reintroduce some of these foods in small amounts.

Dietitians advise pouchees to adopt a “little and often” approach to food and to eat slowly and chew your food well. They also recommend you experiment with the size and timing of your meals and you may find some foods suit you better than others. So a bit of trial and error won’t do you any harm!

In the NHS’s Eatwell Guide is a dietary caveat which applies to all of us whether pouchees or otherwise: “Most people in the UK eat and drink too many calories, too much saturated fat, sugar and salt, and not enough fruit, vegetables, oily fish or fibres.”

Whatever approach you take to your post-surgery diet, if you are in any doubt whatsoever about anything please seek advice from your hospital dietitian. He or she will be only too happy to pass on dietary advice and eating tips.

The Michelle Martin formula

Pouchee and RLG committee member Michelle Martin who had her pouch fitted in 2019 says: “I religiously followed what I refer to as the ‘beige diet’ – avoiding anything with too much fibre including too many vegetables and fruit. After that, I gradually reintroduced fruit and veg and very quickly I was able to enjoy a very healthy and varied diet.

“I have made some adaptations to my diet as I find certain foods do not agree with the pouch. I have therefore limited the amount of red meat I eat, I avoid ice cream and despite my love of sugar and chocolate I have to limit these to a treat. However, I frequently give in to my sugar cravings and regularly regret that decision! I also find I have to limit my alcohol intake to one drink per sitting!

Adds Michelle: “I start my day with porridge and fruit. I have a varied lunch menu including sandwiches, salad, homemade soup, and whenever possible I make my own bread or sourdough. I really enjoy cooking. I make the majority of my dinners from scratch and most of them are based around vegetables, salad and fish. I am still able to enjoy spicy foods and I love curry or chilli dishes.

“I find the policy of eating a little and often works very well, so I have a reputation for always eating! But I normally only eat small amounts at any one time, and I can’t eat a three-course meal as I get full up very quickly. Eating out can be more challenging as I need to ensure the food is of good quality and that minimal oils and fats are used during the cooking process. I also find that to save wastage I generally order starters for my main course.

Probiotics are another of Michelle’s dietary favourites. “A while ago I had my first bout of pouchitis. It was caught early and is now under control, however I have now introduced probiotics to my diet and take them every morning with homemade natural yoghurt,” she said.

“To keep my pouch healthy, I find I must look after my general health. I know my pouch is at its best when I take care of myself ie eat the right foods, exercise, and get enough sleep. When I start to rush around, get stressed, and do not take the time to think about what I am eating, my pouch and my overall health deteriorates.”

The vegan approach

**Picture of health: Andrew Millis with fellow vegan and running partner Kate Dunbar**

The recent rise in the number of people seeking meat-free alternatives has led to the growth of vegetarianism and in some cases veganism in the UK.

The vegan diet is based on plants such as vegetables, grains and fruit and foods made from plants. It also excludes meat, fish, dairy products and eggs.

Veganism is not for everyone but Andrew Millis, our very own marathon man who was RLG vice-chair and is a very active member of the committee, is a passionate advocate. Andrew, who has run many marathons for various causes, says: “Two years into a vegan lifestyle I can report my pouch and I are doing very well indeed.

“I can still run half marathons, the odd marathon and park runs and my pouch is working brilliantly. No pouchitis, no medication whatsoever, and a good plate of veg with rice or potatoes leaves me wondering if I have had any surgery at all.

“I have so much energy for activities and to help focus on my work as well as stamina for the cycling and running I enjoy. I do take a vitamin supplement called Veg 1 which is a chewable tablet and tastes like the Haliborange we used to take as kids. It is available from the Vegan Society.

“I don’t have any colds or such similar elements and if I was missing out on any nutrition, I think I would have known about it after two years. I had a blood test at my local practice, and my vitamin B12 was well up (> 300ug, compared to minimum 200ug).”

Trendy diets that entreat you to slim, impress your colleagues or attract a new partner are one thing. Carefully planned ones that aid recovery and help you regain strength after an operation are another – and a timely aid for anyone with bowel problems or conditions.

Christopher Browne
RLG Commitee member and ROAR! editor.

See pouchsupport.org/join for further information.

You can download a copy of the slides for the Gabriella Poufou webcast below.

Healthy eating for patients with an internal pouch

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A double tribute to Morag Gaherty

The Red Lion Group owes former membership secretary and Roar! editor Morag Gaherty a double debt of gratitude.

Morag who sadly died of cancer earlier this year was one of the pioneers of the group when it was founded in 1994. Working closely with St Mark’s Hospital’s senior pouch nurse specialist Julia Williams, it was Morag’s drive and determination that helped transform RLG from a small patient support group into a national and now international charity.

So you can imagine the committee’s surprise and gratitude when we heard that Morag had left us a £3,000 bequest in her will.

Morag’s husband Brian who had a pouch op after suffering from FAP (familial adenomatous polyposis) was also an active founder member of the Red Lion Group and served as chair of RLG for three years.

When Brian passed away in 2005 Morag continued to be an active member of the committee, mainly due to her concern that one of her three children might inherit FAP, a genetic condition that can cause bowel cancer, from their father.

Morag was always a vibrant and good-humoured presence at Information Days and RLG committee meetings. Her lively articles and acute observations about pouchcare and modern treatment were also a delight to read in various editions of Roar! magazine.

Morag was a woman of many parts. A trained chartered accountant, she founded and ran a successful online reusable nappy business, appropriately named The Nappy Lady, for almost 10 years – and the company is still trading.

Morag who lived in Bearsted, near Maidstone, Kent, leaves a daughter Lucy, aged 23, and a 21-year-old son Thomas.

Stoma or J-Pouch? A life changing decision

Stoma or J-Pouch? A life changing decision.

” So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?” Joe Wright on J-Pouch Support Facebook group.

Many of us are faced with this life changing decision – permanent ileostomy (stoma) or J-Pouch. Of course, not everyone even has the privilege of having this choice. Depending on circumstances, the decision may have already been made for us or not available. Prior to the invention of the Ileal Pouch Anal Anastomosis (IPAA) commonly referred to as a J-Pouch there was no alternative to a permanent stoma. When the J-Pouch procedure was invented, it was an appropriate option, most commonly for sufferers of UC and more rarely FAP. Sadly, not an option for Crohns disease or Cancer in the rectum. If you are in a situation where you have an acute condition, requiring emergency intervention, and you are treated at a location which is not a specialist centre experienced in the J-pouch procedure, they may perform a proctocolectomy removing the rectal stump. The rectal stump and anus must be left in situ for the creation of a J-pouch. It is not recommended to perform the J-pouch creation on an acutely ill patient. The ideal situation would be a three-stage operation – Colectomy with ileostomy, J-Pouch creation with loop ileostomy and finally the closure of the loop ileostomy and J-Pouch functioning, sometimes known as the “take-down”.

Diagram Description automatically generated — Diagram showing 2-stage and 3-stage IPAA (Ileal Pouch Anal Anastomosis)

Although it is the case that some people have the J-Pouch creation in a single stage this is rare. More likely this would be for a patient with FAP rather than suffering with UC. Most UC patients will find themselves with a temporary stoma for several months or longer. These patients may then find themselves adjusting to life with the stoma and asking themselves the question – is J-Pouch creation the way to go or am I better off as I am?

There has been a recent thread on the J-Pouch Support (UK Specific) Facebook Group on this subject and I present below some of the questions and answers.

From Joe Wright. So, I need to make the decision very soon to either make the stoma permanent and remove my rectum etc. or go for the j pouch. I’ve had two years to think about this and still can’t decide as some stories put me off like finding toilets all time. I just don’t know what to do for the best?”

From Stephen S. I feel your pain, I also need to make the exact same decision soon. When I first got the ileostomy, I was 100% sure I wanted the J pouch. These days I’m 75/25 in favour of keeping the ileostomy (like you, I don’t have many issues with it, the bag lasts a few days, I go swimming, camping, walks, days out, holidays etc and it has little to no impact on my life – I also love spicy food, which I feel wouldn’t be an option with a JP), I was initially on-board with the idea of ‘if it goes wrong, just go back to a stoma’, but my surgeon said to me that it’s not a great path to go down, they’re big surgeries, you will lose some small bowel (which will make output looser, absorb even less B12 etc etc) and the stoma will never be as good as it is now, so it’s certainly an option, but he said if I’m thinking like that, then I should keep the illy. But as crunch time approaches, it’s really hard to make the call, knowing that there’s never another option. The hands we’re dealt in life, eh?

From David Davies (Red Lion Group Chair). I enjoyed reading your very well-balanced post. I’m guessing you haven’t had the surgery to create the pouch yet. This is a big op and certainly not a stroll in the park so my feeling is you must be motivated by the prospect of poohing out of your bum (instead of into a bag) to go through the op plus the subsequent (and much smaller) stoma closure op. Plus the possibility that your quality of life might be adversely affected if the pouch doesn’t work out well. Your acceptance of the stoma is impressive, and I wonder if you have a driving desire to have the pouch? Let’s face it, we have all had the crucial surgery that saved our lives, whether the initial surgery was necessitated by UC, CA or FAP (or anything else). The subsequent choice of stoma vs pouch is more of a lifestyle decision for most, albeit with implications for mental health and well-being. And you raise a very good point about it not being so straightforward to go back to a stoma if the pouch doesn’t work. But one thing I would counter is the spicy food thing. Many pouchees eat spicy foods without problem – me included. So, I would caution about having that as a reason not to go for a pouch. Another consideration is employment – some self-employed are put off by the more extensive surgical journey for a pouch vs a stoma and the potential loss of income. I had a driving, overwhelming desire to get a pouch, which meant I never even considered for one second the prospect of sticking with a stoma (which I also got on ok with). I think that helped with my acceptance of the consequences in terms of operations and recovery and the various challenges of living with a pouch. Best wishes on your journey, whatever your decision, and I hope the comments of this excellent group are helpful.

From Gary Bronziet (Red Lion Group Membership Secretary). My pouch journey followed a common path. Starting with mild symptoms, I was originally diagnosed with proctitis (which effects just the rectum). This was way back in 1979 when I was living and working in Toronto. I returned to the UK in1980 and over the next few years the symptoms got more serious developing into full blown chronic ulcerative colitis (UC). I was fortunate to be referred to John Nicholls and there began a life-long “relationship”. I recall that at our first meeting, he drew me a picture of the pouch procedure with the reassurance that most cases of UC are resolved without the need for surgery. Between 1980 and 1984, I had several in-patient stays in St. Mark’s (the original building in City Road, Islington). I was jointly under the care of John Nicholls, and Professor Leonard-Jones, on the medical side. There was certainly no pressure on me to have surgery, and the available medical options were tried (which at the time were salazopyrin and steroids). Of course, anyone that has suffered with UC will testify – the effects of the disease were debilitating and affecting all aspects of my life, including extreme weight loss and necessary blood transfusions. I was however a reluctant surgical patient and tried to soldier on. I remember on one of my admissions to St. Mark’s, another patient who had begun his pouch journey advising me to have the op. I recall his words that “I obviously hadn’t suffered enough yet”! He was right, and eventually I reached the decision that my quality of life was so poor that I really had no option but to agree to the surgery and in 1984 my own pouch journey began. The plan was for a 3-stage procedure, which commenced in the autumn of 1984, when I was admitted to the London Clinic where John Nicholls performed my total colectomy and ileostomy. Goodbye to ropey colon!

Following my surgery, I was soon back at work and enjoying life for the first time in years. I can’t say that I “liked having a stoma” but it certainly wasn’t as bad as I had imagined, and the effect on my quality of life was transformational following the years of chronic UC. The plan had been to have the second stage operation 6-months later which would have been the summer of 1985. However, at this stage I was beginning to have the doubts that were expressed at the start of this article. The pouch creation is major surgery, and it’s a tough decision to volunteer for what is essentially “elective surgery” at a time when you are feeling healthy. The stoma did not stop me doing anything. I travelled, played squash, swam etc. It was a long time ago, but I recall my biggest doubt with having a pouch was “urgency”. The last thing anyone wants who has been in this position is to return to a situation where they are scared to be more than 10ft from a toilet. (I also had my first son, Daniel, born in May 1985). When I checked into St. Mark’s in the summer of 1985, I expressed these “doubts” to John Nicholls. A joint decision was made that there was no urgency in making the decision. It was suggested that it would be safe to delay for up to three years – at which point a decision would have to be made to either proceed with the pouch surgery or further surgery to remove the rectal stump that had been left for the pouch creation. So, life continued with the stoma for a further 3 years.

A person and person in a pool Description automatically generated with medium confidence — **Gary & young Daniel in Crete (1987) Swimming no obstacle to stoma**

Deciding to proceed with the pouch surgery was an extremely tough decision. I had become comfortable with the stoma, was enjoying life, getting on with my career and of course enjoying family life with my young son. The thought of undergoing more major surgery was daunting, but what swung it for me was the fact that, if I did not have the pouch, I would still require major surgery to remove the rectal stump. {That was the recommended course of action back them, but it may be that the situation has changed or doesn’t apply in all cases}.

For better or for worse I decided to go with the pouch, and this was scheduled for November 1987. I recall I was due to speak at a conference in Montreux in October 1987 and John Nicholls mentioning that “it was one of his favourite places” and I should attend the conference before my surgery. I recall gazing out on the beautiful lake and wondering if I had made the right decision.

I am pleased to say that the surgery went smoothly, and I now have a collector’s item of a pouch – a “hand sewn” W Pouch courtesy of John Nicholls. I’m not sure if he autographed it.

I have never regretted the decision. I would say that I had at least 25 years of perfect pouch function. Able to eat anything, no frequency or urgency issues, never getting up at night. In fact, my pouch was such a “non-issue” that I have travelled the world without even feeling it necessary to disclose my pouch to my travel insurance. {I’m not sure I would recommend that depending on your circumstances}.

A group of men standing in front of a jeep Description automatically generated with medium confidence — 2015 Celebrating my 60th birthday with some off-road driving & Golf at Gleneagles. Daniel (left) then 30, David (middle) then 24. My Pouch, then 28!

In more recent years, I have had some issues. Emptying problems and more recently adhesions/blockages relating to scar tissue from the original surgery. The emptying problems were addressed by using a medina catheter. For the blockages, I am currently awaiting surgery to hopefully rectify this.

If you would like to add your story to this BLOG and/or possible publication in ROAR! please send to Christopher Browne (ROAR! editor) at cbrowne@brownemedia.co.uk

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

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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

J Pouch Videos on YouTube Channel

J Pouch Videos on YouTube Channel

Living with J-Pouch or Stoma and affect on mental…

Living with a J-Pouch or Stoma and affect on mental health

Patient panel

Zeina Bushnaq: Biography

Michelle’s magic formula

Dietary advice for J-Pouch

Dietary advice for J-Pouch
Eating your way to rude, good health

The Michelle Martin formula

The vegan approach

A double tribute to Morag Gaherty

A double tribute to Morag Gaherty

Stoma or J-Pouch? A life changing decision

Stoma or J-Pouch? A life changing decision.

The COVID crisis has accelerated our movement to modern…

Recommended annual blood tests for j-pouch patients

St. Mark’s Oral Rehydration Solution (ORS)

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

How to make St. Mark’s solution

Ingredients for 1 litre batch

Managing your pouch output

Mind over matter

When I visited the home of the red lion

When I visited the home of the red lion

Out of Africa

Health and safety

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The Red Lion Group is a UK registered charity number 1068124

J Pouch Videos on YouTube Channel

Living with a J-Pouch or Stoma and affect on mental health

Patient panel

Zeina Bushnaq: Biography

Michelle’s magic formula

Dietary advice for J-PouchEating your way to rude, good health

The Michelle Martin formula

The vegan approach

A double tribute to Morag Gaherty

Stoma or J-Pouch? A life changing decision.

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

How to make St. Mark’s solution

Ingredients for 1 litre batch

Managing your pouch output

When I visited the home of the red lion

Out of Africa

Health and safety

Dietary advice for J-Pouch
Eating your way to rude, good health