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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)

You can contact the Pouch Team at St. Mark’s Hospital by phone on 0208 453 2099
or by email at lnwh-tr.internalpouchcare@nhs.net

If you leave a message, they will do their best to respond to you within 24 hours.

St. Mark’s Hospital Pouch Team (from left) Petya Marinova, Zarah Perry-Woodford, Rali Marinova

You can find further details of the St. Mark’s Hospital Pouch and Stoma nurse team 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/

Events

Attend our regular monthly J-pouch forum on zoom

Attend our regular monthly J-pouch forum on zoom

See report on most recent meeting below from RLG Chairman David Davies (Updated 7 December 2022)

Our regular monthly pouch forums take place on the first Monday of every month at 7:30 pm (London time) on Zoom. Meet online with other pouchees for friendly pouch related chat!

If you have a pouch or are considering pouch surgery, and have not attended one of our regular pouch forums, then you are missing a fantastic opportunity to “meet” with other like minded individuals, to discuss and compare pouch related experiences and challenges.

We welcome regular and new attendees, ranging from people with “new” pouches, “old” pouches and “yet-to-be” pouches. (Two of our regular attendees have pouches over 40 years old, and were number 9 and 10 of the first pouches ever created!). We have attendees from all over the UK and some from further afield, including Europe and North America.

Subjects discussed are varied, including diet, medication, leakage, butt-burn, frequency, travel, catheters, recommended blood tests, dehydration…the list is endless. All those delicate subjects that you may not wish to discuss elsewhere,

The reality is that we are still a rare breed, and a common reaction from first time attendees is that they have never previously met or had the opportunity to talk to someone else with a pouch. A quote from one attendee “Thank you – I did enjoy the session. I’d forgotten that in certain circles I am perfectly normal!“.

So don’t be shy! Go to pouchsupport.org/events or click below to register for the next scheduled pouch forum.


Updated 7 December 2022

The last RLG pouch forum of 2022 took place on Monday 5 December with approximately 20 pouchees dialling in for an enthralling zoom session.  These informal chat events have become a regular in people’s diaries and it was good to see so many familiar faces and a few new faces too.  The discussions were wide-ranging and focussed on real pouch problems and their resolution.  The topics included:

  • Vitamin B12 deficiency and a GP letter to get testing and treatment for pouchees 
  • Access to the St Marks pouch nurse specialists for pouch-related advice 
  • Symptoms and treatment for blockage
  • When you should go to hospital with a blockage
  • Prevention / reduction of gas
  • Food supplements and whether they work or not?
  • Probiotics for treatment of pouchitis?
  • Use of catheters and/ or warm water flushing for complete pouch emptying
  • How to reduce or stop having to get up in the night for a pooh
  • Foods to avoid for Christmas dinner!

There were lots of solutions, including one pouchee who had turned around a problematic pouch with a strict regime of pouch care, including a warm water enema to (further) liquidise the pouch contents in the morning and at night, using a medina catheter to fully empty, 2 sachets of Vivomixx per day (other probiotics are available) and green tea supplements (for their apparent anti-inflammatory properties).  Not only is his pouch now healthy, but his doctor complimented him on having the healthiest looking pouch he had ever seen!! 

Time ran out for the last topic of the day, which was how to avoid night time leakage and seepage, so we will discuss this at the next RLG zoom forum, which will take place on Monday 9 January 2023.  Attendance is free, but please remember to register beforehand at pouchsupport.org/events to receive the link to join. 

Wishing you all a Happy Christmas and a healthy and prosperous New Year, looking forward to meeting again on the 9th January.

David Davies
RLG Chairman

Events

New season of J-Pouch webcasts announced for 2023

Contents

  • New season of J-Pouch webcasts announced for 2023
    • Ileoanal pouch formation and revisional surgery for pouch problems
    • Biofeedback and other techniques to help you empty your pouch
    • Advances in laparoscopic approach to pouch surgery
    • Professor Omar Fiaz, Clinical director at St. Mark’s hospital
    • Uchu Meade, Head of Pharmacy at St. Mark’s Hospital
    • St. Mark’s Hospital, Pouch nurses

New season of J-Pouch webcasts announced for 2023

Following on from our highly popular J-Pouch webcasts on zoom in 2021/22, we are excited to announce that we will be repeating this in 2023 and we already have some top speakers lined up. An opportunity for J Pouch patients to see and hear from the foremost experts in the field of J-pouch surgery and the challenges of living with a J-pouch. Each talk will be followed by an interactive Q&A so a chance to put your questions to the experts. We will have some familiar and popular speakers from previous years, and also some new faces.

NEW THIS YEAR – we will also be LIVE STREAMING the webcasts on our Facebook Group!

We are delighted to announce that Valerio Celentano – head of the J-pouch one-stop clinic at Chelsea & Westminster Hospital – will be opening this years series on Thursday, 9th March on the subject of “Ileoanal pouch formation and revisional surgery for pouch problems“.

Registration is required to attend the zoom sessions. To register and to see the details of other upcoming sessions, go to pouchsupport.org/events or click on button below.

Register Now


Ileoanal pouch formation and revisional surgery for pouch problems

Valerio Celentano – Head of J-Pouch One stop Clinic at Chelsea and Westminster

Mr Valerio Celentano – Consultant Colorectal Surgeon, Chelsea & Westminster Hospital NHS Foundation Trust

Date/Time: Thursday, 9 March 2023 at 7:30 pm (London time)

Ileal pouch-anal anastomosis (IPAA) after total proctocolectomy (removal of entire large bowel and rectum) is a surgical procedure for ulcerative colitis refractory to medical treatment and majority of patients with familial adenomatous polyposis (FAP), as an alternative to permanent end ileostomy. Although many patients undergoing pouch surgery have satisfactory functional and long-term outcomes results, the procedure is complex and associated with problems and complications in the short- and long-term. Several complications following pouch surgery can lead to the pouch requiring removal (pouch excision) or permanent diversion (need for ileostomy) and reported rates can be up to 20%. This spectrum of conditions carries the very unfortunate and likely inappropriate name of “pouch failure”. 

Gaining experience in pouch surgery is hard as the procedure is performed infrequently across many hospitals, as reported by the UK Pouch registry, outlining that the average number of pouches performed in English institutions was low and one quarter of the surgeons undertaking this operation had performed only one case over the last five years. The interactive talk will discuss the challenges of ileoanal pouch surgery and some of the surgical complications that can benefit from revisional (redo) pouch surgery. 

An institutional initiative to promote standardisation of multidisciplinary care in IPAA surgery will also be presented.

For a detailed description please refer to :-

https://www.bsg.org.uk/service-success-stories/the-one-stop-ileoanal-pouch-surgery-clinic-a-multidisciplinary-patient-centred-approach/

Register Now


Biofeedback and other techniques to help you empty your pouch

Ellie Bradshaw –  gastrointestinal specialist nurse and biofeedback specialist

Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace

Date/Time: Wednesday, 5 April 2023 at 7:30 pm (London time)

More details to follow.

Register Now


Advances in laparoscopic approach to pouch surgery

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

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

Janindra Warusavitarne, a consultant colorectal surgeon at St Mark’s Hospital, is a pioneer in laparoscopic surgery (sometimes known as keyhole surgery). Janindra, who is a patron of Red Lion Group, will compare the laparoscopic approach with the more traditional  open surgery techniques.

Date/Time: Wednesday 16 May 2023 at 7:30 pm (London Time)

Register Now


Professor Omar Fiaz, Clinical director at St. Mark’s hospital

Professor Omar Faiz

Professor Omar Faiz is the Clinical Director and a Consultant Colorectal Surgeon at St Mark’s Hospital and Professor of Practice in Colorectal Surgery at Imperial College.

Date/Time: To be Confirmed.

More details to follow.


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

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

Date/Time: To be Confirmed.

More details to follow.


St. Mark’s Hospital, Pouch nurses

Zarah Perry-Woodford and Petya Marinova

Date/Time: To be Confirmed.

More details to follow.


Details of further Red Lion Group webcasts for 2023 will be added in due course.


Stories

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

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.

News

Important update for Medena Catheter users

Important update for Medena Catheter users

Updated 31 January 2023

Further to our previous update on 13, December 2022, we have been notified by Wellspect that the Medena catheter is now available to order. Product codes remain the same.

If you experience any difficulty in obtaining supplies, please contact Wellspect Ltd on 01453 791 763.


Updated 13 December 2022

After weeks of uncertainty, the UK-based supplier/manufacturer Wellspect has agreed to restart production of the Medena catheter.

Petya Marinova, St Mark’s Hospital’s lead nurse (pouch and stomacare), said: “We have been in close discussions with Wellspect and helping with whatever we can and they have agreed to restart production of the Medena catheter in the next two months“.

“It will be produced by a different company (YourRad AB in Sweden), but the design remains the same and Wellspect will continue as UK distributor. All existing Medena product codes should remain the same.”

Meanwhile, the St Mark’s pouchcare team have been analysing the results of trials on a similar product – the Marlen catheter. “If the Marlen catheter company decides to go ahead with introducing the Marlen product to the UK market it will take about 9 to 12 months,” said Petya.

“Meanwhile if someone is running low on catheters, our St Mark’s pouchcare team has enough Medena catheters to send emergency stock to whoever may need them.”

THIS IS FANTASTIC NEWS FOR ALL THE J-POUCH AND KOCK POUCH PATIENTS THAT RELY ON THE MEDENA CATHETER!


Updated 15 July 2022

Would you like to particpate in trial of a potential replacement product?

A significant number of J pouch owners use the Medina Catheter to assist with emptying their pouch. Following the announcement that the Medina Catheter is being withdrawn from production, we are pleased to announce that a potential replacement product has been identified and the Pouch Nurse team at St. Mark’s Hospital is now in the process of starting a trial with the new Marlen catheter.

They are currently working closely with the company to introduce the product in the UK, including Drug Tariff approval.

The plan is to start officially trialling the Marlen catheters, hopefully at the beginning of August (pending delivery and logistics).  

We wish to help them by identifying existing medina catheter users who would like to participate in the trial. They will be looking for a small sample of 10-15 people initially.  

All participants would need to provide feedback and agree for their anonymous testimony to be shared and used in research. 

If you are interested in participating in this trial, would you please send your details to info@pouchsupport.org. Further details will be provided in due course.


Updated 24 November 2021

The following response was received from the marketing manager at Wellspect on 5 November 2021

We are still actively looking at potential alternative products. We have one promising option we are exploring at the moment, although it is not currently available in the UK. If it proves suitable, the next step would be to find a UK distributer willing to take it on. I have kept your contact details and will let you know how this progresses. 

In the meantime, we have sufficient stock of the Ileostomy catheter and have not yet taken a decision on the eventual date for discontinuation in the UK. On current usage rates we have significantly more than 6 months available. While I completely understand their concern, I would urge all users to continue to order as normal.


Posted 15 June 2021

Unfortunately, our ileostomy catheter is produced in very small volumes and global demand is both low and in steady decline. We have therefore had to take the difficult decision to discontinue this product.

At current UK usage rates we will have sufficient stock to continue supply for a minimum of 6 months. While there are no direct alternatives currently available on the UK Drug Tariff, we are actively looking at products with other manufacturers/suppliers which may prove suitable.

We’ll aim to keep you informed regarding an exact date after which the product will no longer be available on prescription and also if there is any progresses with alternative manufactures/suppliers.

In the meantime, I’d like to extend my apologies for any inconvenience this has caused.


We have responded explaining that, while they label the product an “ileostomy catheter”, it is in practise also used by many J Pouch (and other pouch) owners, and the planned discontinuance is causing much distress in the pouch community.

We will keep you informed of any updates in particular with regard to a replacement product.

On that subject, Theresa Parr (RLG committee member) has for some time been an advocate of the Aquaflush system as an alternative to the Medina Catheter. It is also available on prescription. See here for further information.

News

Seasons Greeting from RLG (and a turkey recipe!)

Seasons Greeting from RLG (and a turkey recipe!)

On behalf of the Red Lion Group trustees, I would like to wish all of our members and followers a peaceful and joyful christmas, and most importantly – a healthy and happy 2023!

In the spirit of xmas, I would like to share with you below a turkey recipe provided by commitee member and trustee Theresa Parr.


Soused turkey recipe

Forget all the bother with brining, etc. Far too much fuss! I first started using a basic version of this recipe 40 years ago, since then been modified several times. Definitely tried and tested so you will have beautiful, moist, tender and tasty turkey every time.

  • Chestnut Stuffing
  • 2 rashers of streaky bacon
  • 1 onion
  • Liver from the turkey chopped small
  • Knob of butter
  • 200g vacpacked chestnuts broken up
  • 1 Bramley apple chopped small
  • 4 tablespoons chopped parsley
  • 1 dessert spoon chopped thyme
  • 1/4 teaspoon ground mace or grated nutmeg
  • 1 large sausage skinned (Sainsbury’s do really good high meat content sausages, the caramelised onion ones work well)
  • Salt and pepper

Fry bacon, onion and liver for 10 mins in the butter.

Tip into bowl and mix in all the other ingredients.

Soused Turkey

Loosen the neck end of the turkey and stuff with the chestnut stuffing mixture. Secure with a skewer.

Pop an apple or onion into the main cavity. This keeps it moist.

Slather the turkey with butter, about 500g. I soften the butter in the microwave and then brush it on for a good, even covering.

Cover the turkey in back bacon. (I use lots as it comes out soft and delicious; very good on Boxing Day). Worth using tooth picks to secure as they tend to slide off all the butter!

Place a few large carrots, large tomato, a stick of celery and a halved onion in the bottom of the roasting tin. ( I chuck the celery afterwards but roast the carrots with your potatoes and pop the onions out of their skin as an accompaniments)

Place turkey on top of the veg.

Then pour in half a bottle of wine into the pan, red or white, your choice but use good quality wine as it flavours the turkey and is the base for your gravy. ( If you don’t drink wine, then you can use a good stock)

Cover with a double layer of foil but wrapped loosely to allow it to steam.

It’s cooked when the juices from the thigh run pink.

Gravy 

Remove everything from the roasting tin but leaving just a couple of tablespoons of liquid. Serve the excess liquid.

Whisk in 2 tablespoons of flour and warm through over a low heat until combined.

Gradually whisk the reserved liquid back in and whisk until slightly thickened.

Add salt and pepper to taste.

If you don’t have enough liquid then you can make it up with stock.

Many thanks to Good Housekeeping and Delia for the original recipe inspiration.

Theresa Parr
RLG Commitee member and trustee

Events

Attend IA Pouch Information Day featuring Richard Lovegrove

Attend IA Pouch Information Day on 21st January featuring Richard Lovegrove

The J Pouch subgroup of the UK Ileostomy Association (ia) is hosting an information Day on Saturday 21st January 2023 at Jury’s Inn, Birmingham

FREE for anyone living with, or considering, an internal pouch, this event has guest speaker, colorectal surgeon, Richard Lovegrove, along with other esteemed speakers.

Topics will include:

  • J Pouch surgery and who is suitable Pre and post op care
  • Diet and nutrition for J Pouch patients
  • J Pouch complications 
  • J Pouch follow up
  • and much more…
Richard Lovegrove, Colorectal Surgeon

Book your FREE place now!

Simply email: internal.pouch@iasupport.org

Includes interactive Q&A sessions and social chats with fellow ‘pouchies’.

You can download the official poster below:

IA Information day 2023 Poster
Download Now!
News

St. Mark’s stoma/pouch team nominated for Nursing Times awards…

St. Mark’s stoma/pouch team nominated for Nursing Times awards.

The St Mark’s Hospital stoma and pouchcare team has been shortlisted in four categories for the Nursing Times Awards.

Updated 28 November 2022

The awards ceremony has now taken place. Although St. Mark’s did not bring home the awards, it was a great honour for them to be nominated and we at Red lion Group and on behalf of our members are very proud of them.

St. Mark’s Hospital Trust had a total of four nominations for the Nursing Times Awards, split over two separate events.

The first two nominations for the Nursing Times awards on 26th October 2022 were for the book “Stoma care – A Guide for Patients” Written by Rali Marinova, Petya Marinova and Zarah Perry-Woodford, which was nominated in the Patient Self Care Category, and for the Surgical and theatre nursing category.

The other two nominations were for the Nursing Times Workforce Summit & Awards, which was held on 22nd November. These are more management, workforce and service development-oriented awards that the Nursing Times holds annually. St. Mark’s had a nomination for Nurse Manager of the Year for Zarah Perry-Woodford, and Best use of technology for the Pouch/Stoma care department for digitalisation of services.

And in October St. Mark’s Stoma/Pouch Nurse team won second place in the Association of Stoma Nurses UK Award, for successfully maintaining services during the covid pandemic, producing patient self-care stoma handbook and digitalisation of it’s service.

For information how to contact the St. Mark’s Stoma/Pouchcare team see https://pouchsupport.org/contacting-the-pouch-team-at-st-marks-hospital/


The St Mark’s Hospital stoma and pouchcare team has been shortlisted in four categories for the Nursing Times Awards.

These are an important source of recognition as the Nursing Times, like the British Medical Journal, is one of the leading magazines in the medical and health sectors.

The awards ceremony will be held at London’s Grosvenor House Hotel on two dates.

The first two nominations are for the Nursing Times awards on 26th October 2022 when the St Mark’s team has been nominated for its book “Stoma care – a guide for patients” in the ‘Promoting Patient Self-management’ and also in the ‘Theatre and Surgical Nursing” category.

The second two nominations are for the Nursing Times Workforce Summit & Awards, which is on 22nd November when the team has been nominated for Best Use of Workplace Technology – Digitalisation of Stoma and Pouch Care Services and finally, Zarah Perry-Woodford has been nominated in the category Nurse Manager of the Year !

So let’s send the team our very best wishes – they certainly deserve to win!

St. Mark’s Hospital Stoma and Pouch Care team

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

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

Contents

  • Living with a J-Pouch or Stoma and affect on mental health
    • Patient panel
    • Zeina Bushnaq: Biography
  • Michelle’s magic formula

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

Michelle Martin: positivity

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

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

This situation made me realise two key points:

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

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

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

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

Christopher Browne
ROAR! Editor


A version of this article first appeared in ISSUE 63: Summer 2022 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.

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