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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

See also Vitamin B12 deficiency following restorative proctocolectomy

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
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!2115 Downloads

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.


News

Contacting the St. Mark’s Hospital Pouch Nurses (and other…

Contacting the St. Mark’s Hospital Pouch Nurses and other useful contacts (including PALS)

If you are a patient of St. Mark’s Hospital, you can contact the Pouch Nurse Team for advice by phone on 020 8453 2099 or by email at lnwh-tr.internalpouchcare@nhs.net

If you are not a patient of St. Mark’s, we recommend that you ask your GP for a referral. St. Mark’s Hospital is the UK National Bowel Hospital and accepts referrals from all over the UK.

You can find further details of the St. Mark’s Hospital Pouch and Stoma nurse team and how to refer a patient at https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Other contacts at St. Mark’s Hospital.

ST MARK’S SPECIALIST SURGICAL PRACTITIONERS – 
For surgical wound related problems or pre-assessment querie
s

Email: lnwh-tr.stmarkspractitioner@nhs.net 

ST MARK’S ENDOSCOPY – 
For Endoscopy procedure questions or appointments   

Telephone: 0208 235 4130
Email: lnwh-tr.endoscopy@nhs.net   

Website: https://www.stmarkshospital.nhs.uk/services-a-z/wolfson-unit-for-endoscopy/ 

ST MARK’S ADMISSIONS – 
For questions regarding your admission  

Telephone: 0208 235 4055
Email: lnwh-tr.stmadmissions@nhs.net 

ST MARK’S OUTPATIENTS – 
For outpatient appointments questions  

Telephone: 0208 235 4051/0208 963 8853
Email: lnwh-tr.smopd-appointments@nhs.net 

ST MARK’S IBD TEAM – 
For any IBD queries – e.g. IBD medications, Iron Infusion   

Telephone: Tel:0208 453 2368 (Advice line) /Secretary: 020 8235 4026,  Email: lnwh-tr.ibdnurse@nhs.net  

ST MARK’S INTESTINAL FAILURE UNIT – 
For Roundwood/IRU questions  

Telephone: 020 8453 2214
Email: LNWH-tr.IFU@nhs.net 

ST MARK’S NUTRITION NURSES – 
For Roundwood/IRU Nutrition nurses questions 

Telephone: 0208 235 4120
Email: LNWH-tr.St-Marks-Nutrition-Nurses@nhs.net

ST MARK’S BIOFEEDBACK – 
For biofeedback appointments and queries, contact the Biofeedback team

Telephone: 0208 453 2458
Email: 
lnwh-tr.biofeedbackphysiologystmreferrals@nhs.net

ST MARK’S MEDICAL SECRETARIES – 
For Consultant appointments and queries, contact your Medical Consultant secretary 

Dr Donnelly/Dr Gabe/Dr Holman’s secretary – 
Telephone:
 0208 235 4196
Email: dora.michaelides@nhs.net 

Dr Naghibi’s secretary – Telephone: 0208 235 4084  

Dr Amar Sharif/Dr Nikolaos Kamperidis’s secretary – 
Telephone:
 020 8869 3058
Email: Bharti.Huda@nhs.net 

Professor Hart/Dr Akbar’s secretary – 
Telephone:
 020 8869 5808
Email: sokantey@nhs.net  

ST MARK’S SURGICAL SECRETARIES – 

For Consultant appointments and queries, contact your Surgical Consultant secretary 

Miss Vaizey/Professor Faiz/Mr G Thomas’s secretary – 
Telephone:
 0208 235 4020 
Email: susan.russell6@nhs.net  

Mr Warusavitarne/Mr Mehta/Ms Williams’s secretary – 
Telephone:
 0208 235 4168 
Email: meeta.maru@nhs.net  

Ms E Burns/Mr A Antoniou/Mr I Jenkins’s secretary – 
Telephone:
 020 8235 4177 
Email: a.elie@nhs.net  

Mr Tozer/Miss Asha Senapati’s secretary – 
Telephone:
 020 8235 4195 
Email: rose.gonzalez@nhs.net  

Professor Clark’s secretary – 
Telephone: 
020 8235 4018 
Email: anne.wheelhouse@nhs.net

PATIENT ADVICE AND LIAISON SERVICE (PALS)

If you need advice about St. Mark’s services, don’t know where to turn to, or have concerns about your care, the Patient Advice and Liaison Service (PALS) is there to help.

For PALS contact information go to https://www.lnwh.nhs.uk/pals/

News

J Pouch Videos on YouTube Channel

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.

YouTube.com/@PouchSupport

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

News

Dietary advice for J-Pouch – Eating your way to…

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

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

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

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

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

Gabriela Poufou – Healthy Eating for patients with an internal pouch

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

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

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

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

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

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

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

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

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

From 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

Michelle Martin

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.

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

See pouchsupport.org/join for further information.

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

Healthy eating for patients with an internal pouch
Healthy eating for patients with an internal pouch
Download Now!1782 Downloads

Related Posts

  • Our next webcast – Dietary and medication Q&A for J pouch patients
    Date
    September 23, 2024
  • J Pouch Support facebook group hits 1700 members
    Date
    February 11, 2025
  • They came, they saw, and heard all about living with a j-pouch!
    Date
    May 14, 2019
Events

Ileo-anal Surgery – A Guide for Patients


Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Zarah Perry-Woodford

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

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 participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

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

Register your place soon as places are limited!

Events

Summary of guest speakers – J-Pouch webcasts 2021

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)


Following out 2020 highly successful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (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, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be 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!

Keep an eye out for updates, including additional speakers and dates and times.

We had the pleasure of listening to the following speakers in 2021. We look forward to running a similar series next year. Join us in 2022!


Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Subject: Through the keyhole – latest developments in pouch surgery
Recorded: Wednesday, 5 May 2021. 07:30 pm (London time)


Prof. R. J. Nicholls, Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London

Subject: Evolution of Modern Surgery
Recorded: Wednesday, 19 May at 7.30 pm (London time).


Uchu Meade, Head of Pharmacy at St. Mark’s Hospital.

Subject: Keep taking the tablets: a guide to the best drugs and when to take them.
Recorded: Wednesday, 26 May at 7.30 pm (London time).


Professor Ailsa Hart, Consultant Gastroenterologist, Sub-Dean (St Mark’s Academic Institute)

Subject: Professor Hart will be speaking on the subject “Managing a pouch behaving badly”

Recorded: Monday 14, June 2021 at 07:30 PM (London time)


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

Subject: St Mark’s Hospital’s clinical services at Northwick Park, Central Middlesex Hospital and Beyond

Recorded: Monday, 28 June 2021 at 7.30 pm (London time)

To Register for events go to https://pouchsupport.org/events



Gabriela Poufou, Dietician St. Mark’s Hospital

Subject: Healthy eating for Patients with an Internal Pouch

Recorded: Wednesday 4 August 2021 at 7:30 pm (London Time)

To Register for events go to https://pouchsupport.org/events


Petya Marinova, Pouch nurse specialist, St. Mark’s Hospital

Subject: St Mark’s Hospital: Life after the Pandemic

Recorded: Wednesday 22 September 2021 at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


Ellie Bradshaw, formerly gastrointestinal specialist nurse at St Mark’s Hospital, now at London’s Queen Charlotte Hospital.

Subject: Crouch for your pouch – key emptying tips

Recorded: Wednesday 13th October at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Subject: Fistulas associated with pouches.

Recorded: Wednesday 8th December at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events


For a review of last years Zoom into Summer series webcasts , click HERE.

News

Why Zoey wears her pouch with pride

Why Zoey wears her pouch with pride

Former world champion fitness model Zoey Wright had 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

Stories

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

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

Information Day 2020 – book your place now!

Information Day 2020 – book your place now!

Hopefully, you have already saved the date for the Red Lion group Information Day and AGM, 2020, which will take place on Saturday 25th April at St Mark’s Hospital, Harrow. The Red Lion Group Information Day is one of the most informative events for patients, prospective patients, friends family and health care professionals with an interest in Pouch Surgery.

(The information day is open to ALL, not just patients of St. Mark’s Hospital)

You will have the opportunity to hear from some of the leading professionals in the field of Pouch Surgery practise and research and interact with fellow pouchees, prospective pouchees and health care professionals. You can see highlights and download presentations from last years (2019) Information day here.

Spaces are limited and you are recommended to register your intention to attend as soon as possible. Attendance fee (which includes refreshments and lunch) is £10.00 for non-members and £8.00 for members.


You can book your place using the link below.

You will be sent regular updates on the agenda as they become available and payment instructions in due course.

Register Now

 

Become a member of the Red Lion Group and attend the Information day at the discounted rate and other benefits.

Join Now

 


Confirmed Speakers

Dr. Yoram Inspector

We are delighted to confirm that Dr Yoram Inspector will be speaking again following his hugely popular presentation at the Information Day in 2018. He will be speaking on “The psychology of bowel (pouch) surgery”.

Dr Yoram Inspector M.D is a consultant Psychiatrist and a Psychotherapist and the Head of the Psychological Medicine Unit of St Mark’s Hospital which provides psychological treatment and support for people who cope with various gastrointestinal diseases and disorders.

Dr Yoram Inspector

Zarah Perry-Woodford
Many of you will be acquainted with Zarah Perry Woodford who will be speaking on the subject “Post-operative and long-term care of pouch patients“. 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. She is also the author of the acclaimed book “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients“.

Zarah Perry-Woodford

Zoey Wright
We are also pleased to announce that we will have a Zoey Wright as a speaker. Zoey is a fitness model and media celebrity who will be celebrating one year to the day of her J-Pouch connection. She will be discussing her J-Pouch journey and training with a J-Pouch.

You can view Zoey’s website by clicking here or on the picture below.

Zoey Wright

Lucia Braz (Research Fellow at St. Mark’s Academic Institute)
Lucia Braz is a Registered Dietitian, trained at the University of Porto where she received a BSc Honours Degree in Nutrition and Dietetics and became a member of the Federation of Nutrition Therapy Practitioners (FNTP) and British Dietetic Association (BDA) in the UK.
In 2017, she stepped out to undertake a PhD programme under supervision of Professor Ailsa Hart and Professor Gary Frost splitting her time between St Mark’s Hospital and Imperial College London. Her main research interest is the role of diet and Short-chain fatty acids in Inflammatory Bowel Disease (IBD) and Pouchitis.

Lucia Braz

FURTHER SPEAKERS TO BE CONFIRMED.

Register Now

If you would like make a donation to the Red Lion Group please see our JustGiving link below.

News

When did you last suffer a fracture?

When did you last suffer a fracture?

Chances are it was some time ago. However, bowel problem sufferers can be more prone to a broken wrist, hip or ankle than others due to a condition known as osteoporosis. Red Lion member Sandy Hyams explains.

Sandy Hyams with her Welsh terrier, Lucky

Seven years ago, I had a nasty fall, breaking and dislocating my shoulder and sustaining nerve damage. I also started suffering from back pain which no amount of painkillers seemed to budge. 

To add to my woes, I discovered that I had wedge compression fractures of the spine when the bones become “squashed” due to their reduced strength. 

As you can see I’m not one to do things by halves! In fact, I lost count of the number of physiotherapists I visited in a vain attempt to relieve my constant pain. And it was not until a GP suggested I have a DEXA scan* that I discovered osteoporosis had been the culprit all along. 

It all started when I tried to reach up into the top of a bedroom wardrobe to lift down a blanket and fell in the process. When I fell over there was a loud crack as I felt my bones go. 

As part of the fall-out (excuse the pun!) I lost about three inches in height and suddenly – it all seemed to happen overnight – I found all my trousers were too long and I couldn’t get up to shelves that had been well within my reach before.


Brittle bones

So, what exactly is osteoporosis? It is a brittle bone condition that is usually discovered – as in my case – after a fall. An estimated one in two women and one in five men over 50 suffer such fractures which usually occur in the wrist or hip. 

Osteoporosis is often referred to as the “silent epidemic” and UC (ulcerative colitis) and Crohn’s sufferers are particularly prone to it. Among the danger signs for bowel disease sufferers are long-term use of steroids, low body weight, poor food absorption and long periods of immobility.

Other contributory factors are family genes, low calcium intake when young, heavy smoking, excessive drinking and lack of exercise. Low bone density also increases with age and one of the major risk factors for post-menopausal women is a declining level of oestrogen, the hormone which protects by balancing the removal of old and the renewal of new bone cells.


Key remedies

Reassuringly, osteoporosis can be treated and prevented. Three effective ways to help strengthen your bones and general skeleton are to revert to a calcium-rich diet, use weight-bearing exercises at home or at the gym and take Vitamin D supplements and get as much natural sunshine as possible! All these remedies help the body to absorb calcium.

For many years the only treatment available for women with osteoporosis was HRT (Hormone Replacement Therapy). Now, however, there is a range of non-hormonal drugs on the market, including the commonly prescribed bisphosphonates, which are mostly in tablet form and taken either daily, weekly or monthly. There are also intravenous and subcutaneous injections. Like most medicines, they all have possible side-effects. For instance, bisphosphonates can cause digestive irritation, a sore throat or difficulty in swallowing.

For me, one of the drawbacks of regular tablets was needing to take them first thing in the morning on an empty stomach and then remaining upright for 30 minutes afterwards. After speaking to a consultant, I decided to opt for Prolia (known as Denosumab), a twice-yearly jab given at my local GP surgery. A week before each injection I have a blood test to check my calcium and vitamin D levels.

If you think you might be at risk of osteoporosis, it would be a good idea to discuss with your GP whether you need a referral for a DEXA scan. It could certainly save you the pain and misery of broken bones in the future. Although osteoporosis does not make a fracture a certainty, the chances of suffering a broken bone are undoubtedly more likely.


* Most hospitals have this scanner which measures the bone density of the spine, hips and femurs and is a simple and pain-free procedure that uses very low doses of radiation. 

For more information on any aspect of osteoporosis, you can phone the Royal Osteoporosis Society (ROS) helpline on 0808 800 0035 or email nurses@theros.org.uk. ROS also has an extensive range of free booklets, leaflets and factsheets about the condition.

Ed: If any RLG members have had similar experiences to Sandy’s, please write to our Letters page (cbrowne@brownemedia.co.uk).


This article first appeared in ISSUE 58: Christmas 2019 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.

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