Stories

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gary Bronziet

Red Lion Group

News

It’s all in the mind…

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

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

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

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

It’s quite a heady subject after all!

News

Mental health support for pouchees and ileostomists – survey

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

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

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

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

Click here

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

News

Would you like to join our Committee ?

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

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

The charity

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

Commitment

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

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

Key attributes are:

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

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

We hope you will be inspired to join us!

David Davies

RLG Chairman

News

Summer 2020 edition of ROAR! now available

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

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

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

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

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

Join Now

News

P-word problems? Why not try a little yoghurt

RLG Notes Secretary Theresa Parr finds regular doses of her own home-made yoghurt help keep pouchitis at bay

Just what is it about pouchitis? What causes this painful seemingly incurable condition that many of us have suffered from time to time?

Years of research projects, in-depth case studies and scholarly medical papers have produced very little so far for patients and medical professionals to go on.

One possible remedy many pouchees turn to has been probiotics – live bacteria and yeasts that are good for your digestive system. However, the people’s favourite, VSL#3, has recently been discredited due to lack of scientific data or testimonials.

Antibiotics are the usual standby as they can give short-term relief and certainly help to allay some of the worst symptoms of pouchitis.

But what about longer-term solutions? RLG’s Theresa Parr has her own unique method of anti-pouchitis control. “I’ve been lucky and have only had two mild bouts of pouchitis which was many years ago. I didn’t fall into the prescribing category and, as VSL#3 is very expensive to purchase, I looked at alternatives,” she says.

Her solution? Yoghurt. “For many years I’ve been making home-made yoghurt and, touch wood, it seems to be doing the trick and moreover it’s extremely simple to make,” says Theresa.Theresa uses a yoghurt maker she bought from the supplier Lakeland (www.lakeland.co.uk) some years ago. The device has an outer unit housing a heating element and an inner, removable plastic container. Here then is the Parr formula:

“You put a small portion of your starter culture (plain yoghurt containing a balanced blend of bacteria which consume lactose) in the container, add milk (full fat, semi or skimmed according to your taste or waistline!), give it a good stir and then just ignore it for 10 to 12 hours.

“If you want thicker yoghurt, then I suggest you strain it *. I tend to use Yeo Valley as my starter yoghurt but that is just down to personal taste.

“Thereafter, you just use some of your home-made yoghurt to make the next batch and I only resort to shop-bought starter yoghurt if I’ve been away for a few weeks.

“Lakeland now make a new all-singing-and-dancing yoghurt-maker with an adjustable thermostat and a strainer for about £25, while Amazon (www.amazon.co.uk) sell similar for about £18. This can also make Greek-style yoghurt and cream cheese. Fancy!

“I like the fact that yoghurt has no artificial sweeteners, additives or preservatives (and I find I’ve usually eaten it all before it goes off anyway!) and, of course, you can add any extras you like to suit your palette.

“It is also great as a base for salad dressing or with chives on jacket potatoes, etc.

“I do not know the precise strains or levels of active bacteria in yoghurt, but my pouch is a lot happier if I eat some on a daily basis.

And Theresa’s secret recipe for success? “I just throw some on my breakfast porridge!”

* Put a clean tea towel over a fine mesh sieve on top of a large bowl (at least 1 litre capacity). Then allow to stand until thin liquid stops draining through the sieve (about 1 hour).

Breakfast treat – cereal topped with yoghurt

This article first appeared in ISSUE 59: Summer 2020 edition of ROAR! if you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive a printed copy of ROAR! twice a year and have online access to archive ROAR! editions going back to 1994.

Join Now

News

Why Zoey wears her pouch with pride

Former world champion fitness model Zoey Wright wore a stoma for four years before deciding to have a J-pouch op – and is delighted she went ahead .

My J-pouch is now 15 months old, and with each month that passes it’s becoming stronger and stronger and so is my confidence in my decision to have the two-stage surgery.

I can now go six or more hours without even thinking about the loo and most nights I sleep right though until the morning, which is something I never thought would be possible. As a personal trainer/fitness Instructor I did worry that it would put stress on how I perform in my job, but it’s been no different to when I had my stoma.

I started taking my instructor-led fitness classes around eight weeks post- takedown — under the guidance of my surgeon Mr Denzil May from the Royal Cornwall Hospital where I had my op.

I eased myself back into taking exercise and made sure I focused on engaging my core muscles to prevent any post-surgical complications/injuries and it didn’t take me too long to bounce back into action!

Since my takedown I’ve also managed two holidays, one being only 14 weeks post-closure to Tenerife with a friend which was rather boozy! And my J-pouch survived! Then at the start of this year I had a mini break to Budapest and had no worries then either.

However, before having my large intestine removed travelling was out of the question, the thought of flying would make me incredibly anxious and I would have found eating anywhere very tricky. Now I can enjoy all the foods and drinks I like without a second thought.

Award-winner

Before I had my J-pouch created I was a fitness modelling competitor and, after three long hard years of intense training and dieting with my stoma, I was awarded the highest title recognised by Pure Elite, the fastest-growing fitness federation in Europe!

But I’ve now decided to take a step back from those appearances on the stage with a new mission in mind. I aim to continue to train at a high level but wish to encourage and inspire people from all walks of life to start their journey in health and fitness.

I must say that as a regular gym-goer I have found the lockdown tough. There have been many ups and down with my mental health but I’ve found it a great time to reflect on what I want to do next in my career and to see family and friends who don’t normally exercise now actually MOVING has given me some great ideas to help them continue to exercise once life returns to normal.I’m feeling very grateful for my J-pouch and couldn’t be happier with the progress I’ve made.

Join Now

News

Help doctoral student with research project

I am passing on the chance for you to get involved in some research being conducted by a doctoral student, Zeina Bushnaq, at the University of Roehampton. Zeina is asking people with ileostomies or pouches for their experiences and thoughts regarding mental health services.

The survey takes about 30 minutes to complete, the project has been approved by the University ethics committee and your data will be confidential and anonymised.

There is no payment, but I hope a few of you will have the time and motivation to complete the survey. Zeina has prepared a flyer for more information and your participation is completely optional!

If you would like to take part in this study, for more information please click here

Thanks on behalf of Zeina and her colleagues. And don’t forget to mention where you heard of the research.

Thanks

David Davies

Chaiman – Red Lion Group

Stories

Video: Considering a J-Pouch? What you need to know.

Mr Toby Hammond talks about J-Pouch Surgery – Recovery Time, Risks and Benefits

New committee member Michelle Martin has made the first of a series of videos about the pouch featuring her own surgeon Mr Toby Hammond as the presenter.

The idea for the series was prompted by Michelle’s experiences of ulcerative colitis and what exactly made her decide to go ahead with J-pouch surgery.

Says Michelle: “In 2017 I had an emergency operation to remove my colon due to undiagnosed ulcerated colitis. It was a total shock. Suddenly I was living with a stoma and everything in my life had changed.

“Initially, my main focus was to have my stoma reversed, however over time I got used to my stoma, I felt well for the first time in years and I didn’t want any more operations.”

However, she wanted to find out more about the second option – having an ileo-anal pouch fitted. “I spent a lot of time talking through my options with my consultant Mr Hammond [Toby Hammond, consultant general and colorectal surgeon at Broomfield Hospital, Essex], but I found that away from the hospital there was limited information that would help me make an informed decision.

“I eventually decided to go ahead with the operation and just over a year later I couldn’t be happier,” says Michelle.

As she points out: “I know deciding to go ahead with the operation is a difficult decision, and I wanted to help others in a similar situation. I approached Mr Hammond and he was more than happy to support the project, and I hope this will be the first of many videos that will help people living with a J-pouch.”

You can view the video on YouTube below.

The Red Lion Group would like to thank Mr Toby Hammond and Graham Fisher, cameraman and editor, for both giving up their time for free and helping to produce this informative film.

If you would like to become a member of the Red Lion Group, you can sign up by clicking on the button below.

Join Now

Events

Zoom into Summer series of Pouch webcasts

Updated Sunday 21 June 2020

Professor John Nicholls discussing the history and evolution of the Internal Pouch procedure.

This week’s Red Lion Group Zoom meeting featured the eminent surgeon, Professor John Nicholls, who spoke about the history and evolution of the different surgical procedures for the treatment of bowel diseases, including the pouch procedure of which he was, with Sir Alan Parks, the first surgeon to describe and carry out the procedure. This was a fascinating talk, especially as so many attending the talk have Professor Nicholls to thank for their own pouch! You can view the recording of the talk by clicking on the picture above.

This was the last session in the Zoom into Summer schedule to feature a guest speaker, however as mentioned at the meeting by Red Lion Group chairman, David Davies, we intend to hold further Zoom meetings in the format of an informal “coffee morning” chat, like the open forums we usually hold at the end of our annual Information Days. The first one is provisionally scheduled for Thursday 2 July at 10:30 am. Further details to follow!

Thanks to everyone that has supported our Zoom events and sent such positive feedback, and special thanks to all of our speakers. We have had over 100 people that have taken part, and look forward to seeing you on our first coffee morning meeting!

Updated Sunday 14 June 2020

Zoom into Summer with Zarah Perry-Woodford – Living with a Pouch

This week 48 of us had the pleasure of listening to Zarah Perry-Woodford, followed by a vibrant question and answer session covering a variety of Pouch related issues. If you missed the session, you can see a replay by clicking on the picture of Zarah above.

Next Thursday you will have the opportunity of hearing from Prof. John Nicholls who, with Sir Alan Parks more than 40 years ago, pioneered the procedure we know now as the Internal Pouch or IPAA. We look forward to hearing his personal reflection on 40 years of the pouch procedure on Thursday 18 June at 10:30 am.

Please don’t forget to register to receive the Zoom meeting Link. You can register by tapping the button below. Note that this zoom meeting will be immediately followed by the AGM (Annual General Meeting) of the Red Lion Group, and Red Lion Group members are invited/encouraged to remain on the Zoom for the AGM. We promise it will be short and sweet and further information about the AGM will be sent out seperately to members.

Note the main presentation from Prof. Nicholls is open to all, not just RLG members!

Updated Tuesday 9 June 2020

Links to the recordings from the first three Zoom into Summer sessions are now available. Click on the pictures below to view the recordings of Dr. Yoram Inspector, Janindra Warusavitarne and Jason Bacon respectively.

Don’t forget to register for this week’s Zoom featuring Zarah Perry-Woodford if you have not already done so!

Updated Sunday 7 June 2020

Dr. Yoram Inspector – the link between the Brain and the Gut

Another “lockdown ” week gone by, and another fascinating Red Lion Group Zoom meeting, this week featuring Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Yoram shared his unique perspective on the link between the brain and the gut, with a good measure of Greek Classics and Mythology thrown in! Make sure to look out for the recording if you missed it.

It’s not too late to register for the Zoom meeting this coming Thursday 11 June (10:30 – 11:30) where this weeks guest speaker will be Zarah Perry-Woodford. Zarah has a CV that reads like a medical Who’s Who. A pioneer in patient care and support, Zarah is the Consultant Nurse at St Mark’s Hospital, the UK’s centre of excellence for pouch and stoma care. Zarah speaks and presents at national and international conferences, writes for the leading medical and nursing journals and in 2016 wrote the definitive “Ileo-Anal Pouch Surgery for Ulcerative Colitis – a Guide for Patients” – a work that has become the go-to bible for those who have had or are about to have pouch surgery. She was also a very active medical liaison officer with the Red Lion Group.

After spending several years developing and expanding the ileo-anal pouch service at St Mark’s Hospital, Zarah is now a key member of the team working on the NHS-sponsored “Ostomate Project”, which aims to expand and develop stomacare services and products throughout the UK.

You must register to receive the Zoom meeting Invitation.

Scroll down for further information about upcoming meetings.

Updated Sunday 31 May 2020

Janindra Warusavitarne – Innovation in Pouch Surgery

Thursday we had another enjoyable and enlightening Zoom meeting with over 40 attendees, watching and listening to Janindra Warusavitarne. His talk was followed by a lively Q&A session. Janindra was also complimented on having the best book shelf seen on Zoom so far!

If you attended you will also have heard about the further exciting speakers lined up for future sessions. On Thursday June 11, we have the pleasure of hearing from Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital. Many of you will know Zarah from personal experience, and as you will know, Zarah literally wrote the book on “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“. You can see further details about Zarah and her book in a previous post here.

Hot off the press news is that our speaker on Thursday 18 June will be none other than Professor John Nicholls. As many of you will know, Prof. Nicholls (with Sir Alan Parks) pioneered the surgical procedure we know as the Internal Pouch or IPAA. (see recent post on their historical paper describing the procedure here ).

And don’t forget to register to attend this weeks ZOOM (Thursday 4 June) where the speaker will be Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology. His last talk at a Red Lion Group Information day, was rated the most popular by attendees with his fascinating insights into the link between the brain and the gut.

For further information, and to register please scroll down.

Updated Saturday 23 May 2020

Jason Bacon – CEO of St. Mark’s Hospital Foundation

This past Thursday, we held the first of our series of Zoom into Summer webinars and a good time was had by all. Jason Bacon, CEO of St. Mark’s Hospital Foundation gave a very interesting talk on how St. Mark’s Hospital has adapted in the light of the COVID-19 virus. A recording of the talk will soon be available on line.

Further to last weeks update, I can now confirm that the talk by Dr. Yoram Inspector will be on Thursday, 4 June (10:30 – 11:30). Anyone that has attended one of his talks will know that he is one of our most popular Information Day presenters. Dr. Inspector is a Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital. Amongst his interests and specialities is Psycho-Gastroenterology.

It’s not too late to register for the Zoom meeting this coming Thursday 28 May (10:30 – 11:30) where this weeks guest speaker will be Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital. Janindra has a particular interest in minimally invasive surgical techniques and is at the forefront of developments in Pouch Surgery.

Details of how to register are below. So come on fellow pouchees and guests! Bring your morning cuppa, and join us for elevenses with an interesting talk with time for Q&A and discussion.

We are delighted to announce that we will be hosting a series of Pouch related webinars (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike. As you may know, regrettably we had to postpone the RLG annual Information Day usually held at St. Mark’s Hospital, but here is a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

The following online meetings are currently scheduled (more to follow) :-

Thursday 21 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Jason Bacon (CEO of St. Mark’s Hospital Foundation)

Thursday 28 May 2020 Time 10:30 – 11:30 BST
Guest Speaker Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Thursday 4 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Dr. Yoram Inspector, Consultant at the Psychological Medicine Unit (PMU) at St Mark’s Hospital.

Thursday 11 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital

Prof. Nicholls receiving gift from Chairman David Davies after speaking at Information Day 2017

Thursday 18 June 2020 Time 10:30 – 11:30 BST
Guest Speaker Prof. John Nicholls – The Rear Admiral (retired)

If you would like to attend any session, please register your name and email address by clicking the button below. Please indicate the session(s) you would like to attend. You will be sent joining instructions in due course.

Zoom is FREE and extremely easy to use, and you can join with the press of a button from a desktop computer, laptop, tablet or smart phone. There are no costs to you in joining the webinar.

We look forward to hearing from you soon and receiving your registrations!

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

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

It’s all in the mind…

Mental health support for pouchees and ileostomists – survey

Would you like to join our Committee ?

The charity

Commitment

Summer 2020 edition of ROAR! now available

P-word problems? Why not try a little yoghurt

Why Zoey wears her pouch with pride

Help doctoral student with research project

Video: Considering a J-Pouch? What you need to know.

Zoom into Summer series of Pouch webcasts

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The Red Lion Group is a UK registered charity number 1068124