Stories Archives - J Pouch support charity

Loneliness of the long-distance (J-pouch) runner

Illness and J-pouch surgery were no obstacle to a former triathlete’s ultramarathon success. Everyone with a J-Pouch is a winner!
Just ask Tom Plater.

Good marathon runners are a rare breed – and outstanding ones a very rare species indeed. RLG member Tom Plater, who’s specialist skills are marathons and ultra-marathons, is certainly one of the latter. A red-blooded Lion to his core, you might well say. But what makes Tom’s latest achievements even more remarkable is that he has a J-pouch.

Four years ago this 37-year-old former triathlete and ironman faced a markedly different test of his resolve and stamina when he discovered he had FAP (familial adenomatous polyposis), a condition that, if left untreated, can lead to bowel cancer. Soon after the diagnosis, Tom was told by two St Mark’s Hospital consultants that he would need surgery to create a J-pouch. Recovery would be tough, but he would be able run again, they said.

Brave to a fault, the optimistic consultant project manager says: “Even as I was being bombarded by new information, well-informed advice on recovery and cautions about my mental wellbeing, I’d already fixed my sights on getting back to normal,” During his six months with a stoma, Tom started running again “wearing baggy clothes”, as well as local cycling trips and “finding evermore reasons to not go to the office”.

However, as Tom says, his first run post-op was “terrifying and the decisions to be made endless “. So, he resigned himself to being a gym bunny, never venturing outdoors. Then one day he spoke to a friend whom he’d met during his earlier Army career who said he was organising a marathon in the famous Brecon Beacons. Tom duly signed up.

“l leapfrogged from marathons into the unnatural world of Ultras (ultra-marathons)“

“The event turned out to be a huge confidence boost and a return to my love of being in the hills with friends,” says Tom.

Then the following year, 2020, the intrepid runner leapfrogged from marathons into the unnatural world of Ultras [ultra-marathons] when he entered a 100km race. To get into shape for the event, Tom adopted a keto/high-fat/low carb [carbohydrate] diet (HLFC), the theory being that fat-burning ketones reduce the volume of food needed during a race and so lessen the risk of any malfunctions. Aided by the relentless encouragement of his family and friends, Tom “stumbled to the finish of the race in 12hrs 29mins”.

Then he heard about an even more challenging event – the North Downs Way 100 – a 100-mile-long ultra-marathon that was being run over the national trails of Hampshire, Surrey, and Kent.

“100 miles of non-stop running, utilising a digestive system that is no longer capable of letting me sleep for more than two hours in one stretch was a totally ridiculous idea. But the madness of it relieved most of the worry throughout my training and into the build-up for the race” says Tom. And Tom also had a secret weapon – a handy little bag of M&S Percy Pigs.

“I got to the start-line totally convinced that with these gummy children’s sweets and another product called Tailwind nutrition for athletes, I could complete at least 37 miles of the race in one stretch with no J-pouch malfunctions” says Tom.

“After finishing that first third of the race, I found the rest of the course was made up of glorious off-road trails and the becalming effects of a hot English summer’s day.

As ever, Tom kept a nary eye out for any source of relief. “I did my best to let go of my anxiety when facilities weren’t at the marked aid stations and made the most of the euphoria of seeing an unexpected loo stop when it appeared,” he says.

Eventually Tom achieved his pre-race goal of completing the race in under 24 hours – not one of his fellow competitors realising that this former triathlete had recently had two major operations and was the proud owner of a unique piece of man-made anatomy.

Tom’s ultra-marathon efforts also raised £2,350 for the St Mark’s Hospital Foundation and £1,350 for the Help for Heroes military charity.

As this brave Red Lion says now: “I am convinced that a J-pouch can reach whatever goal is on its owner’s finish- line.”

Congratulations Tom!

Jason Bacon, CEO of the St Mark’s Hospital Foundation, commented: “As someone who enjoys running and occasionally gets out for a 10k or half marathon race I stand in awe of Tom Plater. Tom’s run was a truly remarkable feat and raised £2,350 for the Foundation for which we are truly thankful. “Importantly Tom also raised awareness that having a pouch is not an impediment to achieving extraordinary physical feats.“

A version of this article first appeared in ISSUE 64: Winter 2022-23 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.

See pouchsupport.org/join for further information.

Red Lion Group website hits 100k views!

We are really proud to have reached this milestone. Since we revamped and rebranded the Red Lion Group website as pouchsupport.org in 2018, we have just reached 100,000 views, from over 30,000 visitors, from 135 different countries. The numbers are growing year on year, and this year 2023, we should hit 40-50,000 views. I think that is pretty impressive for a website focused on such a niche medical condition, but the most important thing is that we are providing help and support to so many pouchees and prospective pouchees out there!

The picture above shows how the number of views has increased since we went live with the new website in 2018. The number of views in 2022 hit 33,008 and we are already at 11,061 views for 2023 – and it’s only the beginning of March! It looks very likely that we will exceed 40,000 views this year.

The following picture shows the most popular posts and pages since the start of 2023.

Although Red Lion Group is primarily UK based, our website visitors and Red Lion Group membership spans the globe. Picture below shows the top 10 countries by viewer number.

To see the full list of 135 countries (to date), download the image below. There are some interesting names on the list!

Website Views by Country

See ALL Views

We hope that our website growth will contunue onwards and upwards and thank you all for your continued support.

Gary Bronziet
RLG Membership Secretary and IT support

J Pouch and Vitamin B12 deficiency

J Pouch and Vitamin B12 Deficiency

It is very common for patients with ileo-anal pouch (J Pouch) to suffer with B12 deficiency but this may not be picked up by routine blood tests

Vitamin B12 is absorbed in the end ileum, which in the case of J pouch patients has been removed. It is therefore very common for J pouch patients to suffer from Vitamin B12 deficiency.

Unfortunately, routine blood tests to show B12 deficiency can be unreliable as described in the NHS paper on the subject: Click on the link below.

NHS Diagnosis: Vitamin B12 or folate deficiency anaemia

In particular, this paper explains that

A particular drawback of testing vitamin B12 levels is that the current widely used blood test only measures the total amount of vitamin B12 in the blood
This means it measures forms of vitamin B12 that are “active” and can be used by the body, as well as the bound or “inactive” forms, which cannot be used by the body
If a significant amount of the vitamin B12 in the patient’s blood is inactive, a blood test may show normal B12 levels, even though the patient cannot use much of it and might have Vitamin B12 deficiency
This is why it’s important for symptoms to be taken into account when a diagnosis is made.

Signs and symptoms of Vitamin B12 deficiency

In summary, it is recommended that if a patient with a J Pouch presents with relevant symptoms, they might well benefit from B12 supplements (usually in the form of B12 injections), even if blood test results show the B12 level is within the normal range.

Pouch B12 deficiency for GPs

B12 deficiency is common amongst patients with ileo-anal pouch. However, the routine blood test to check for B12 deficiency is unreliable. This document, produced by the Pouch Nurses at St. Mark’s Hospital London, explains why the blood test may be unreliable and can be shown to a GP if you feel you have the relevant symptoms.

Download Now!

Medic Alert Card

We have also updated the Medic Alert information on our website to provide a full explanation of this B12 deficiency phenomenon. The medic alert page contains a comprehensive description of what ileo-anal pouch surgery involves and the issues and challenges faced by people living with an ileo-anal pouch. The reality is that ileo-anal pouch surgery is performed relatively rarely, and its possible that you may be the only pouch patient registered with your GP practice. It is understandable that you may know more about the procedure than your GP, and therefore you may both benefit if you share this information with him/her!

If you are a Red Lion Group member, you should have a “Can’t wait / Medic alert card“, which has a QR code which links to the medic alert information.

The Medic Alert online information and a downloadable copy can be found at pouchsupport.org/medic or by scanning the QR code on the card.

The Medic Alert information has been created by the Red Lion Group, with support from the Pouch nurses and Consultants at St. Mark’s Hospital the UK National Bowel hospital and pioneers in the field of the ileo-anal-pouch.

For further information about the Red Lion Group “Can’t Wait / Medic Alert” card click here.

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…

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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

See pouchsupport.org/join for further information.

Dietary advice for J-Pouch

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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

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.

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

Download Now!

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

Loneliness of the long-distance (J-pouch) runner

Loneliness of the long-distance (J-pouch) runner

Red Lion Group website hits 100k views!

Red Lion Group website hits 100k views!