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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.

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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.

Wright Decision” “The new me!”

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

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!

Register Now


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.

Register Now

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) :-


Jason Bacon

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


Janindra Warusavitarne

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


Dr. Yoram Inspector

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.


Zarah Perry-Woodford

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.

Register Now

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!

Events

Notification of AGM

Dear RLG member,

We are living in strange times and I speak for all the Trustees in hoping that you and your loved ones have been keeping well during the COVID-19 crisis.  

The crisis has meant the cancellation of our annual Information Day, which would have taken place in April and would have included the Annual General Meeting (AGM).  In place of the Information Day, we have been running a series of webcasts using the Zoom facility allowing members to dial into the sessions from the comfort of their own homes without the risks of social interaction. 

Under these exceptional circumstances, the RLG Committee has therefore decided to exercise best endeavours and to host an Extraordinary General Meeting (EGM) this coming Thursday 18th June at 11:45, immediately following the latest “Zoom into Summer” event (a webinar with Professor John Nicholls) which is scheduled for 10:30-11:30 am. We are aware that we will not be able to achieve the usual notice period for members but feel this is the best chance to achieve quorum so that the voting is validated.  To register to attend the webinar with Prof. John Nicholls and the EGM, please click the button below.

Register Now

To download EGM agenda, click here.

There will be an EGM report published on the website within one week for those of you who are not able to attend in person, with opportunities to ask questions of the Committee via the website (as always).  If you wish to table a question or comment in advance of the AGM, then please use the info@pouchsupport.org email address or indeed contact me directly on my personal email (dbd60@hotmail.com).  

Yours sincerely

David Davies
(RLG Chairman)

News

How Rebecca took those vital first steps to recovery

RLG member Rebecca Berzins almost became an also-ran when pouch surgery threatened her passion for running. Then sheer determination took over.

I’ve always been a keen runner, enjoying the buzz and camaraderie of several fun runs, 5ks and a half marathon or two – even during the four years I had a stoma. 

However I faced a much bigger snag in 2016 when I had a pouch operation. Suddenly I began to struggle to get back into my familiar running routine again, sometimes finding the timing of my runs tricky and unpredictable.

I decided that with some good planning there was no reason why I couldn’t take it up again. So at the start of 2019 I signed up for the Vitality 10k – a 10-kilometre run through the streets of London. I decided that I’d be damned if my pouch was going to rob me of my passion for running!

I duly printed off a training plan and to the cheers of my four-year-old daughter, Cleo, shouting “Run faster Mummy”, I set off running again. Despite not being altogether in the best of shape physically I knew that, on the days that I did feel up to it, stepping out for a run would make me feel like me again. Running always makes me feel fit, healthy and alive!

As race day approached friends and family started asking me how they could sponsor me so I decided to use the opportunity to raise funds for the Red Lion Group. Having sat in on the AGM at the annual Information Day in April 2019, I knew how valuable the funds would be.

Sticking to my training plan was tough at times as on bad pouch days I couldn’t run as planned. Yet I tried not to get despondent and kept in mind that I was taking part in a race that was important to me – not simply bettering past racing times.

During my training I ran first thing in the morning before I ate anything as I find that is the easiest approach. But on race day my start time wasn’t until 10.45am so I knew I would need some fuel. I had a light breakfast first thing and left myself plenty of time to empty my pouch and make several toilet trips before the race started (although race day nerves meant I’ve always done that anyway so I can’t really blame my pouch!).

Being a little out of practice and somewhat short of training meant my knees were struggling by the halfway point, but I was pleased not to have to make any toilet stops during the race, which took me a little over an hour to complete.

It was wonderful to be back doing what I love again and I am delighted that I raised £605 for the Red Lion Group.

Finishing touch: Rebecca Berzins with her Vitality 10k medal

Ed: Congratulations Rebecca! We very much appreciate your fundraising efforts

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

Join Now

News

Coronavirus Update

Coronavirus Update

Many of you have been contacting us over the past few weeks about the coronavirus outbreak expressing understandable concerns about its effects on your health, work, finances and general well-being. 

It has also meant we have had to postpone the Red Lion Group’s Annual Information Day and AGM, which was due to take place on 25 April, in compliance with government restrictions.  We recognize the value of the Information Day to our members and are constantly reviewing the possibilities of a re-arranged event later in the year. We will keep you posted on this.

Covid-19 has posed many questions and concerns for us all about both the present and the future. In particular the “at risk” status of pouchees and potential pouchees who are on various medications.  

There is very clear and concise advice on this topic on the websites of the Ileostomy and Internal Pouch Association (IA) ( Click here ) and Crohn’s and Colitis UK ( Click here ) and we suggest you refer to these in the first instance

If you still have issues or concerns then please don’t hesitate to contact us at info@pouchsupport.org.

The RLG Committee

Events

Information Day Postponement

Information Day Postponement

Dear Members and Guests,

The Red Lion Group Committee has reviewed the latest updates regarding the emerging Coronavirus situation across the UK and implications for the safe conduct of the Internal Pouch Annual Information Day scheduled to take place at St. Mark’s Hospital on Saturday 25th April.   As the outbreak is still gathering pace in this country, it is not possible to accurately forecast what the coronavirus status will be in 6-7 weeks’ time. Nevertheless, the Committee has taken the decision to postpone the Information Day until later in the year, when hopefully the situation will be under greater control.  This is especially pertinent to pouchees and potential pouchees whose immune systems may be compromised and reflects our determination to look after the safety and wellbeing of our members and their guests at all times.  

We realise this will be disappointing to delegates and appreciate your understanding of the need for this action.   We will be monitoring the situation closely and will be announcing the alternative date for the Information Day as soon as possible via the usual channels (our web site, emails, posters, letters and through social media).   

Thank you for your patience and continuing support. We remain open online at all times on our web site at pouchsupport.org or by email at info@pouchsupport.org and of course we wish you all well.

The RLG Committee

Events

Ileo-Anal Pouch Surgery – A Guide for Patients


Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients

Zarah Perry-Woodford

Stop Press – Zarah Perry-Woodford will be speaking at the Red Lion Group Internal Pouch Information day at St. Mark’s hospital on Saturday, 25th April 2020.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be speaking on the subject “Post-operative and long-term care of pouch patients” at its Internal Pouch Information Day to be hosted at St. Mark’s Hospital on Saturday, 25th April 2020.

You can find out more about the Information Day and reserve your place by clicking here.

Register your place soon as places are limited!

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