From baby, to bag and beyond - Triathlete Gillian Castle talks about life after birth trauma - Supporting and empowering ostomates - Colostomy UK
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Spring 2021 | Issue 61
Supporting and empowering ostomates
From baby,
to bag and
beyond –
Triathlete
Gillian Castle
talks about
life after
birth trauma
REAL LIVES 2 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORG
F R O M T H E E D I TO R I A L T E A M
Dear readers
Editorial Team
Editor, Writer & Researcher
Richard Biddle
Creative Editor & General Manager
Libby Herbert
Senior Stoma Care Nurse Specialist
Ambra Bertinara
Colostomate & Volunteer
Jackie Dudley ‘Caring for a Person with a Stoma’ workshops delivered by Stoma Care Nurse, Joan Garwood
Colostomate & Volunteer
It’s normally around this time of year that I get a burst of energy. With those dark,
Gillian Cowell
wet mornings and gloomy afternoons receding and the first hints of spring in
Marketing & Communications Manager
the air, so my spirits are lifted. It signals the approaching end to winter’s nocturnal
Lucinda Mitchell
existence; no more going to and from work in the dark! Instead, it’s time to break the
Data Analyst & Publishing
hibernation and get out and about. It’s the moment to start thinking about booking a
Arvind Anand
summer holiday. I even have some enthusiasm for doing jobs around the house. This
year is, of course, very different. As I write this all those signs of spring are here, just not
my usual verve and excitement.
2020 was a tough year and I think it’s vital we admit this. I doubt anyone has come out
of it unscathed. But, to my mind, reflecting on the last 12 months and thinking about all
we have been through, is the best way of staying strong and moving forward. Covid–19
is the UK’s 21st Century Blitz, and just like the last one – we will prevail! Hopefully this
edition of Tidings will help give your mood a well–earned boost. So get the kettle on,
put your feet up and escape the madness for a few moments!
As usual we have all the regular features. In particular, I would like to draw your
attention to the item in Colostomy UK news about Covid–19 vaccines. If you have
been concerned about their safety in relation to people with stomas, then hopefully
you will find our statement on the matter reassuring. In Dear nurse our very own Ambra
Bertinara deals with the issue of blockages and gives plenty of useful advice for people
with both colostomies and ileostomies. Jennie Burch tackles another common problem:
rectal discharge. She explains why a retained rectal stump can lead to this and suggests
a number of ways to manage it. We have two further articles which I hope will be of
interest. On page 20 you can read about some stoma awareness training we have
recently delivered. The importance of doing this type of work cannot be underestimated.
Front cover: On page 18 you will find the preliminary findings of some research conducted by a
Gillian Castle Masters’ student at Manchester Metropolitan University, around perceptions of body
image amongst sufferers of IBD. We were pleased to support this work and are very
Tidings Magazine:
grateful to members of our private Facebook group who agreed to take part.
The views expressed by the contributors are not
necessarily those of Colostomy UK. Great care has We have six Real Lives stories for you to enjoy. We catch up with Jessica Logan whose story
been taken to ensure accuracy, but Colostomy we covered last spring. Gill Castle picks up on a topic we covered last edition, recounting
UK cannot accept responsibility for errors or
omissions.
how a childbirth trauma led to her having a permanent colostomy. As you will see she
has gone from struggling with what happened to embracing life again. Similar can be said
Disclaimer: of Lizzie Whitchurch, another truly inspirational woman who hasn’t let years of suffering
The display, description or demonstration
of products and services or the inclusion of chronic illness dent her optimism and love of life. Ken Edwards’ story recounts a very
advertisements, inserts and samples within Tidings varied past, including spells as a singer and time in local politics. Since his stoma surgery
Magazine does not constitute an endorsement or Ken has been campaigning in his area for stoma–friendly facilities as well as working hard
recommendation of these products and services by
Colostomy UK. to develop local support for ostomates. Our
©Copyright 2021 Colostomy UK. All rights
final two stories are a little off–piste… Rachel
reserved. No part of this publication may be Dodman explains what it is like living on a
reproduced, stored in a retrieval system, or narrow boat when one of the family on board
transmitted, in any form or by any means,
electronic, mechanical, photocopying, recording has a stoma, while John Hunter has submitted
or otherwise, except as permitted by the UK a collection of poems which capture key Richard Biddle
Copyright, Designs and Patents Act 1988, without Editor,
the prior written permission of the publisher. All moments in the life of an ostomate.
Writer &
marks acknowledged.
Happy reading! Researcher
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REAL LIVES
...transported to
another world
Norman, 67
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CONTENTS
Contents
Colostomy UK news
7 Colostomy UK: news
Colostomy UK is a national charity that 17 Colostomy UK: volunteers
offers support and advice to people living
with a stoma, their families, carers, and 20 Colostomy UK: campaigns and projects
friends. We’re here if you have questions,
need support or just want to talk to
someone who lives with a stoma.
Real lives
We also run projects to EMPOWER
ostomates to return to sports, hobbies 13 “Never been better…”, I told my doctor: How wrong
and other interests and give them the I was! Ken Edwards
confidence to take up fresh challenges.
We are advocates for ostomates’ rights 27 I will not be beaten Lizzie Whitchurch
and their voice on the bigger issues.
Our campaigns raise awareness and 30 From baby, to bag and beyond! Gillian Castle
encourage organisations to make their
facilities more inclusive. SUPPORTING 35 Stoma on Board Rachel Dodman
and enhancing ostomates’ wellbeing is at
the core of everything we do. 47 An ostomy bag…could it be verse? John Hunter
How to contact us 53 My crusade to raise awareness of hidden conditions
Stoma helpline for:
Emotional support,
Jessica Logan
experience based advice and
guidance from a volunteer.
0800 328 4257 Wellbeing
24 hours a day and completely free. 18 Emotion Regulation and Rumination in
Adminline for: Inflammatory Bowel Disease: Assessing the Effecting of
Information packs, ID cards, Body Image Perceptions Bethany Preece
RADAR keys, travel certificates and
literature. 24 Colostomy UK: active ostomates®
0118 939 1537
If we’re not in, just leave a message. 43 Retained rectal stump & rectal discharge Jennie Burch
info@ColostomyUK.org
57 Blocked stoma/bowel obstruction:
To request (or cancel) your quarterly
copy of Tidings a simple guide Ambra Bertinara
0118 939 1537
info@ColostomyUK.org
Fundraising
Editorial Enquiries
Letters, articles or other submissions 38 Colostomy UK: focus on fundraising
Colostomy UK
Enterprise House, 95 London Street
Reading, Berkshire, RG1 4QA
Support
info@ColostomyUK.org 50 Your letters and e–mails
Advertising enquiries 59 National support organisations
For a media pack and advertising
rates: 0118 918 0500 59 Stoma care open days
60 Stoma support groups in your county
Find us on Facebook Badge CMYK / .eps
Marketing@ColostomyUK.org
Social media:
Join our ‘private’ support group
today simply put ‘Colostomy UK Donating to Colostomy UK
support group’ into your Facebook
search bar, click on Group and click An annual donation of £25 (or whatever you can afford) allows us to produce Tidings
on ‘Ask to join’ you will be assured and to continue our vital work, supporting, and empowering ostomates – see page
of a warm welcome! 41 for donation form.
You can also donate via our website www.ColostomyUK.org/donate
or by calling us on 0118 939 1537
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 5
C O LO S TO M Y U K N E W S
Annual Prize Draw
R cycle
gives you the chance to win
£2,500! and Raise
Funds
We’ve teamed up with
‘iCollectClothes’ to offer a hassle-
free way of donating items you
no longer want. They will collect
clothing, shoes, linen, bedding,
towels, curtains, accessories (bags,
belts, hats, scarves), books, DVDs,
CDs, soft toys, electronics and small
domestic appliances and convert
them into a donation for Colostomy
UK. Donations allow us to continue
focusing on the things that matter
to you - supporting and empowering
ostomates.
If you live in Greater London, the
West Midlands or Merseyside you can
book a collection. For all other areas
give them a call and they will be able
to advise when they will be collecting
Tickets are only £1 each and all money raised from the draw will go towards supporting vital
near you. Book your collection by
Colostomy UK services such as our 24–hour stoma helpline, support literature and Tidings
calling 0344 879 4417 or book online
magazine. A book of 10 raffle tickets is enclosed – if you would like to purchase more please get in
at icollectclothes.co.uk/donate/
touch by calling 0118 939 1537 or e–mail info@Colostomyuk.org. Simply fill in your details on the
colostomy-uk
tear–off slip and post this section back to us along with your payment. Every ticket purchased helps us
to support and empower ostomates.
6 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORG
C O LO S TO M Y U K N E W S
Colostomy UK: news
Libby Herbert
General Manager
E: libby.herbert@ColostomyUK.org
New Joiner - HR trustee Preeti joins Colostomy UK as our Human
Resources (HR) Trustee, bringing with
became aware of Colostomy UK two
years ago, shortly after her twin sister
Preeti Johal her over 20 years of experience in the was diagnosed with bowel cancer. Both
field gained working in the charity Preeti and her sister found Colostomy
and healthcare sectors as well as in UK to be a great source of support and
local government and public services. information. She was also attracted to
Looking back over her career, Preeti our mission and values.
says she more or less ‘fell’ into HR while
at university; it was here that the seeds Preeti, who lives in west London with her
for what she terms her ‘HR passion’ partner, tries to live a plant–based life
germinated. She is now Chartered and has a love for animals and football.
Institute of Personnel and Development She is also a firm believer in doing
(MCIPD) qualified and also delivers everything you can to have a healthy
training in various aspects of HR body and healthy mind and so takes
practice. part in all sorts of activities, including:
yoga, weight training, running and
Her first professional engagement football.
with the charity sector was seven
years ago and she hasn’t looked back She is really excited about joining
since. Being able to make a difference Colostomy UK’s board of trustees and
supporting charities with her expertise is particularly grateful that she can use
is something that gives her a great her expertise for an amazing cause.
deal of job satisfaction! Preeti first
Caring for a person with They provide attendees with practical
advice and guidance on how to care
If you’d like to join a future workshop
please get in touch with us at info@
a stoma workshops for someone with a stoma. Each 90– colostomyuk.org or by calling 0118
minute session, which is delivered 939 1537
delivered virtually by a stoma care nurse, covers all the
need–to–know topics including:
Colostomy UK has been delivering
‘caring for a person with a stoma’
• the psychological and emotional
workshops in the community since
issues connected with living
2015. When the pandemic hit, we
with a stoma,
feared that these vital workshops
• practical stoma
would not be able to go ahead, but we
management,
are delighted to share that we will now
• a guide to
be delivering these training sessions
different
online thanks to support from the
appliances,
Ernest Hecht Charitable Foundation.
• common concerns,
• dementia.
These workshops are aimed at
professional carers and family
Two initial virtual sessions
members as well as anyone responsible
took place in February and
for supporting someone with a stoma.
early March.
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 7
C O LO S TO M Y U K N E W S
Colostomy UK: news
In partnership with surveyed, more toilets will be added to
the guide.
AccessAble on board there is a huge
opportunity to increase the number of
AccessAble stoma–friendly toilets across the UK
In order for a toilet to be classified and raise awareness with organisations
In a world where face– as ‘stoma–friendly’ it must meet the about the needs people living with a
to–face meetings are following criteria: stoma have.”
on hold, technology • Hook on door. To hang clothing,
has become a handbags and luggage while To view the AccessAble Guide, visit:
critical tool in our changing stoma bags. This provides accessable.co.uk/ To find out more
arsenal, allowing more space in the cubicle. about our Stoma–Friendly Toilets
us to continue • Shelf space. To enable ostomates campaign visit: colostomyuk.org/
in our mission of to spread out their items easily campaigns/toilets/
raising awareness and avoid having to use unsanitary
and advocating surfaces.
for ostomates. Our • Accessible toilet signage. To
partnership work has highlight the right of ostomates
not stopped, in fact we to use the toilet. Reduces risk of
have formed additional hostility when using an accessible The UK Civil
partnerships, and toilet.
we continue to • Mirror. To enable users to see their Aviation
deliver training to
organisations virtually,
stoma while changing their bag.
• Disposal bin in every cubicle. To
Authority Airport
to inform and upskill avoid embarrassment for men and Accessibility Report
their employees, women having to dispose of their
creating a more ‘stoma stoma bag in public view. Colostomy UK is proud to be
aware’ society and actively working with a number
ultimately improving Gregory Burke, Founder of AccessAble, of airports across the UK to train
the experience of said of the initiative: and support them (virtually) in
ostomates. “From the moment we met the team meeting the needs of travellers
at Colostomy UK we could see how with a stoma and other hidden
We have partnered with AccessAble working together could make a really conditions.
as part of our Stoma–Friendly Toilets big difference to people living with a
campaign. They produce an accessibility stoma. We want to end toilet anxiety, To monitor airports’ accessibility,
guide, with detailed information to truly take the chance out of going the Civil Aviation Authority
about venues all over the country. out, so that no one faces uncertainty produce an accessibility
Since we announced about using a toilet report each year. We have
our partnership on “With AccessAble outside of their home. As been supporting Birmingham,
Thursday 3rd December
on board there is a part of this commitment, Bournemouth, Cardiff,
(International Day of we are really delighted Edinburgh, Gatwick, Heathrow,
People with Disabilities huge opportunity to launch the Stoma– London Luton, London Stansted,
2020), every toilet that to increase the Friendly Toilet symbol on and Manchester airports.
they have surveyed has number of stoma– to the AccessAble website For the first time, no airports
been checked to see if and App. We also look were ranked as poor in terms
it has ‘stoma–friendly’ friendly toilets forward to promoting the of accessibility and we are
facilities. If a toilet does across the UK” importance of Stoma– delighted to share that all
not meet our criteria, Friendly Toilets and helping airports have been ranked as
then AccessAble’s surveyors will work to increase the number available.” “good” or “very good” in the
with the organisation to make the UK Civil Aviation Authority’s
necessary changes. Stoma–friendly Speaking about the partnership Libby ‘Airports Accessibility Report
toilets will be listed as such in the guide Herbert, General Manager at Colostomy 2019/2020’. This is an excellent
and they will be searchable on the UK said: step forward for disabled and
AccessAble website and app, so that “We are delighted to be partnering with less mobile passengers.
ostomates can see which shops, pubs, AccessAble to ensure that more toilets
restaurants, cinemas, theatres, railway across the UK are Stoma Friendly. It has To read the full report, visit:
stations, hotels, colleges, universities, been great to work with and train the http://publicapps.caa.co.uk/
hospitals and more have stoma–friendly AccessAble team of surveyors on what docs/33/CAP%201978.pdf
toilets! Over time as more toilets are makes a stoma–friendly toilet. With
8 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORG
C O LO S TO M Y U K N E W S
Launching ‘GOAL’ This project has only been made
possible thanks to money from the
We were excited to launch our new legacy of Isabel and Derek Jonas which
Giving Ostomates Active Lifestyles was gifted to us to help us increase
(GOAL) project on 1 March. GOAL is an the support we offer to the ostomate
eight–week pilot programme designed community in the north east. As we
to support people with stomas get back are a self–funding charity, donations
into healthy eating and exercise. The such as legacy gifts are vital to allow
pilot is focusing on ostomates in the us to continue supporting ostomates.
north east of England. Many people are put off leaving a gift
in their will, as they think they need to
We are delighted to be working with give a substantial amount. This isn’t
Jo Prance, Personal Trainer and Sophie the case. Every penny left to us is put to
Medlin, Consultant Dietitian (with good use helping ostomates of today
expertise in gastrointestinal and and tomorrow. If you leave us a gift,
colorectal health). The sessions run we will use it where we feel the need is
twice weekly on Zoom. Jo uses her greatest. Alternatively, you can request
session to focus on exercise while that you would like it to help ostomates
Sophie uses hers for a structured group in a particular part of the country.
discussion on dietary intervention.
The aim of these sessions is to support We hope that GOAL will have positive
participants in making small steps outcomes for the individuals involved.
towards better health. If this pilot is successful, we hope to
launch further interventions later in the
The aims of the project include: year. Keep an eye out in future issues of
• increased uptake of exercise; Tidings, our website, and social media
• increased confidence with physical (Facebook, Instagram and Twitter)
activity; accounts
• increased intake of fruit and
vegetables; Find out more here: colostomyuk.
• reduction in the consumption of org/active-ostomates/goal-giving-
processed foods. ostomates-active-lifestyles/
Is the Covid–19 Vaccine inflammatory bowel disease and those
receiving chemotherapy has been
Safe for Ostomates? issued but we recommend that you
discuss this with your GP, Specialist
The rapid development and roll out of Nurse or Consultant if you have specific
the Covid–19 vaccine seems to be the concerns. Ostomates who are pregnant
topic on everyone’s lips at the moment, will need to see specialist advice about
and we have received questions the vaccine types”
regarding its safety for ostomates.
For further information
Ian Daniels, Colostomy UK’s president visit the British Society of
had this to say: Gastroenterology: https://www.bsg.
org.uk/covid-19-advice/british-
“On the whole we recommend society-of-gastroenterology-
vaccination against Covid–19. There inflammatory-bowel-disease-
is no evidence that ostomates are section-and-ibd-clinical-research-
at any increased risk of side–effects group-position-statement-on-sars-
from the vaccines currently licensed. cov2-vaccination/n
Specific guidance for those with
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 9
C O LO S TO M Y U K N E W S
Colostomy UK: news
Metropolitan Police
(MET)
On Thursday 3 December,
Colostomy UK General Manager, Libby
Herbert, attended the Metropolitan
Police Service’s Disability Staff
Association ‘Day of Disabilities’ virtual
event on hidden disabilities and Talking about the virtual event, Libby said: working. Looking on social media I have
conditions. “I was honoured to be invited as a guest seen other ostomates that are in the
to the Met police’s International Day of blue light services, this made me think
With 130 members of the police service Disabilities event to hear Nav share her why should a stoma stop me from being
in attendance, Libby was invited as journey with cancer and life with a stoma. a police officer? Obviously, life can’t be
a guest to join an internal panel who It’s not an easy task to do but she was exactly the way it was for me but with
discussed a range of hidden health brilliant, and I was pleased to be able to some adjustments and protection, with
conditions and disabilities including support her, answering her colleague’s the right support I know I can still do my
endometriosis, dyslexia, fibromyalgia questions and raising awareness of the job. With my disability I can sometimes
– and, of course, stomas. As part of needs of ostomates.” have days when I don’t feel great, it’s
the event Libby held a question–and– important to use your colleagues, support
answer session and Colostomy UK Together Libby and Nav shared the groups and your family and friends.
Ambassador and police officer Nav importance of having stoma–friendly You need people to hold you back when
Johal (pictured) shared her story. Nav toilets, and the changes that the MET you push too far, whether it’s at work,
was diagnosed with bowel cancer could employ to support ostomates. exercise, activities, or just general life. You
in February 2019 and now has an don’t need to stop completely, but pause
ileostomy. She addressed her colleagues Nav is now in remission from cancer, and take a breather, maybe make little
about living with a stoma, eloquently awaiting a reversal, and she has returned adaptations.”
and clearly explaining the practical to work: “Importantly for me I have
needs of ostomates working for the been able to get back to work full time To read Nav’s story, visit: colostomyuk.
MET as well as the emotional impact of during lockdown. This is something that org/idpwd-not-all-disabilities-are-
the surgery. has worried me, having a stoma and visible-nav-johal/
Have Your Say on the
Vacancy: Companies Who Deliver
The British
Healthcare Trades
Clinical Trustee Your Stoma Supplies Association
say: “We would
Are you a healthcare professional welcome and
actively working with stoma patients The British Healthcare Trades
value your
and the stoma community? We are Association want to set up a patient panel
honest feedback.
looking for a registered practitioner to give feedback on the service
Your supplier will
to join our board of trustees. You they receive from pharmacies and
not be able to identify your personal
will enhance Colostomy UK’s dispensing appliance contractors. The
responses. All comments you make will
understanding of the challenges latter are also sometimes known as DACS
be included in the feedback report, but
clinicians face on a day–to–day basis and are the companies who deliver your
all attempts will be made to remove
and help us to forge productive supplies.
information that could identify you.”
relationships with the healthcare
profession. Your input and guidance will The panel will consist of approximately
You can register to take part through
shape our services, helping ostomates 300 patients who have had a stoma
the following web link https://cfep.
of today and tomorrow thrive and for at least 12 months. Panel members
net/wKx3LR and once they have
flourish. This is a voluntary position must be willing to complete a 10–
the full panel in place, the British
suitable for a senior clinician. Charity minute survey four times a year, about
Healthcare Trades Association will
experience will be beneficial. To enquire the service they have received around
contact you with further background
please email: info@Colostomyuk.org both ordering stoma supplies and
information on the survey objectives
having them delivered.
and process.
10 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORGC O LO S TO M Y U K N E W S
CAFE – Centre for the Expert Working Group to represent
the needs of ostomates.
embarrassing having to explain and
expose their bags in front of other
Access to Football in spectators.
The survey revealed that people
Europe often face barriers due to a lack of Libby Herbert was delighted to support
consideration of, and provision for, the project and said “[It is] an extremely
their access requirements. Throughout well documented report, CAFE should
the survey, respondents repeatedly be very proud of it.”
gave examples of being challenged
when using accessible services. 72 per CAFE have made recommendations and
cent of participants stated they have they will support stadiums to improve
had their eligibility to use accessible access and inclusion for non–visibly
services questioned at a football match disabled fans, including ostomates, by
or elsewhere. One fan with a stoma, creating training on innovative access
described taking crutches to matches solutions for governing bodies, national
to save ‘the embarrassment each time’ associations, and clubs.
We have been working with CAFE – and to reduce ‘the risk of being turned
Centre for Access to Football in Europe away’. Check out the full report here:
to look at inclusion for non–visibly https://www.cafefootball.eu/
disabled football spectators and Physical searching was a common news/cafe-publishes-access-and-
spectators with long–term health barrier across differently disabled inclusion-for-non-visibly-disabled-
conditions at football matches. Our participants, with some people with spectators-and-spectators-with-
General Manager, Libby Herbert joined stomas reporting that they found it long-term-health-conditions-report
eBay for
Charity
When you sell your unwanted items
on eBay you can donate a percentage
of your sale to Colostomy UK.
Find out more at colostomyuk.org/
get-involved/ebay-for-charity/
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 11REAL LIVES
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“Never been
better…”,
I told my doctor:
How wrong I was!
Ken Edwards
On Tuesday 30 October 2007, I had a routine appointment removed (abdominoperineal resection). The extent of these
with my GP for a thyroid check–up. As I was about to leave procedures meant I needed reconstruction of my perineum
the consulting room, I told him how fit I was feeling. I was and the creation of a flap to close up the wound (VRAM flap
back in the gym and feeling better than I had been for some reconstruction of the perineum). It also led to the formation of
time, except…I felt I had a little problem in the rear, piles two stomas: a colostomy and Mitrofanoff.
or something, or perhaps it was just me getting older. He
immediately called me back and got me on the bed and did an Mitrofanoff: This surgery avoids the need to wear a urostomy
internal examination. Afterwards he said he would ring me in pouch. Instead a small stoma is created and a catheter is
the afternoon at my work, as he was not happy. That afternoon passed into a reservoir (or the natural bladder) to drain the
he phoned to say that he had made an appointment for me urine. A urinary reservoir is fashioned from bowel, or the
at Salisbury Hospital on Friday 2 November. So off I went on person’s own bladder may be used as the reservoir. A channel
the Friday, and after some initial tests I was diagnosed with is created from the appendix, ureter or ileum. The diversion is
suspected bowel cancer. I was told that in the following week I continent because of the valve arrangement, which prevents
would have a CT scan, barium enema and an MRI scan. At the urinary leakage (https://urostomyassociation.org.uk/
end of that week, I returned to the hospital for the results. I was information/mitrofanoff/)
asked to bring the wife.
The pouch for the colostomy I coped with well, although it took a
On entering the waiting room I was ushered straight away into a
bit of time to adjust. Like many other ostomates, I found joining
consulting room to be confronted by six people and told it was Colostomy UK and reading Tidings was a great help. But the
not good news. I did indeed have bowel cancer and it had spread mitrofanoff was a different matter altogether. Prior to the surgery
to the prostate as well. They said they would work as quickly as I had not even heard the term, let alone what it referred to. Post–
possible and were the team that was going to be treating me: op, I learned I was not alone in my ignorance and discovered that
a consultant surgeon, consultant colorectal surgeon, consultant few people (medical people included) were ‘in the know’. As you
urologist surgeon, consultant plastic surgeon, specialist nurse and can imagine, this had implications in terms of getting support!
a support nurse. They had arranged for me to go to Southampton
Hospital the following week to see a consultant oncologist and I’ve been active all
start 12 weeks of chemotherapy. Talk about being fast tracked my life, and I liken
within a month of seeing my GP! it now to having
three lives: one in
I started chemo in Southampton but still the news I had cancer the 60s in the pop
was not really sinking in. The chemo was not at all pleasant in world; then in the
the first week, but I kept telling myself I must be positive and 70s, 80s and 90s in
keep fit. So, I did still manage to get to the gym once a week. At local politics; and
the end of chemo I had more scans, then six weeks of intensive now more recently
radiotherapy every day, which I found tiring and exhausting. in charity work.
However, because I was having the treatment first thing in the In my ‘first life’, I
morning, I was managing to get back into work by the afternoon worked as a singer
most days, and still go the gym as well. I kept telling myself I and did some
must keep fit. Then it was more scans and back to meeting with acting. This started
my team in Salisbury. This is when I was told how different my with me taking up
life would be. guitar and singing in
I was to come back into hospital the next week for skiffle groups.
multiple, major surgeries. I had my whole prostate removed CONTINUED ON PAGE
15, COLUMN 1
(prostatectomy) and rectum, anus and part of my large bowel
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CONTINUED FROM PAGE 13, COLUMN 2 all disabilities are visible. I have enjoyed some success with this
In the 60s I was in a group called the Sceptres. This was followed campaigning, most notably with Salisbury becoming a stoma–
by a solo spell in London, singing in clubs and other venues friendly city. Having been a member of Colostomy UK since my
under the name of Richard Hudson. In my ‘second life’ I was surgery, I was thrilled to find that they too, along with Crohn’s
an agent and councillor on both district and county councils. I and Colitis UK and Changing Places, are campaigning for the
suppose I was an early spin doctor dealing with the press and same things. I know that collectively great steps forward have
TV when I was running by–elections. I was Mayor of Salisbury in been made, although there is a lot more work to be done!
1979–80 and later Chairman of the district council. Wessex Stoma Support Group has also made great progress;
Then came my ‘third life’… I had been involved in charity work membership now stands at nearly 100. With regular press
in the past, volunteering for the MS Society and driving their releases and by working with Colostomy UK it is keeping stoma
ambulance bus (purchased for them as part of my mayoral awareness to the forefront.
appeal). But, given the circumstances I found myself in, I thought It has been a busy time since being diagnosed in 2007. Apart
I should do something about finding support for those with a from a few problems with my Mitrofanoff in the first three
Mitrofanoff and so set about looking for others with a Mitrofanoff. years, I have been lucky. My surgery has allowed me the
In doing so, I came across Kyla Hooper, as she was then, who chance to continue living life to the full. I have kept my hand
wanted to do the same. So we joined forces and in 2009 set up in entertaining, including being a model at a number of the
Mitrofanoff Support (gaining charity status in 2010). I became Colostomy UK Open Day fashion shows. I have continued to
chairman and Kyla and I travelled the country raising awareness travel. Since my surgery I have made three long trips to Canada
and attended nurses conferences, etc. And so Mitrofanoff Support to visit family living over there. I am a firm believer that keeping
was born and is still helping support those with a Mitrofanoff. I fit has helped. Similarly, I have found too, that getting involved
am now an advisor with the charity and, since setting it up have and helping others goes a long way. The consultant surgeon told
also joined the local Wessex Stoma Support Group. After a year I me after my operation: “We gave you six weeks at the start”. But
became their chairman (they must have seen me coming!) and 13 years down the line and I am still here, causing chaos! I am
my wife Pam is Welfare and Membership Secretary. greatly indebted to Hugh Bond my GP, who acted immediately
upon my symptoms and referred me for urgent invesigations. n
If you would like to make your
organisation stoma friendly
please get in touch by emailing:
info@ColostomyUK.org or
calling: 0118 939 1537.
For more information on what
makes a toilet ‘stoma friendly’
visit:
colostomyuk.org/wp-content/
uploads/2020/09/Stoma-
Friendly-Toilets-Guidelines.pdf
During my first year or so of joining the group, I experienced
abuse and harassment when leaving accessible toilets and
found some toilets didn’t have much in the way of facilities
for people with stomas. This prompted me to start writing to
venues, supermarkets and town councils asking them to make
accessible toilets stoma friendly and spread the message that not
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Colostomy UK: volunteers
Emma Howell
Volunteers Manager
E: volunteer@ColostomyUK.org
Well, what a year we have had! When how to spot possible safeguarding • When a lady I spoke to on the
I think back to January 2020, as we concerns) across the charity as Stoma helpline who was feeling low
planned to deliver face–to–face a whole. said: “Thank you for being there, I
volunteer training in Kent and compare • The launch of our Telephone feel better about myself now”, at the
this with what actually happened and Befriending Service. end of the call.
where we are now, I am stunned. I spent • When someone calls back to say you
• Managing to move our training to an
time reflecting on this over Christmas, have made a real difference.
online format. For a national charity
thinking about the year’s many ‘Highs’
being able to provide training in this • Taking part in Colostomy UK’s
and also, I’m sad to say, its ‘Lows’ as well.
way will be important even once the Zoom meditation and yoga.
Thankfully, on balance, I think the former
pandemic is over. • Zoom made it possible for me
outweighed the latter. And I know that
the scales settling in this way, had much
to do with the ongoing enthusiasm and My Lows: to actually ‘meet’ with the rest of
the Tidings editorial team. As well
support of Colostomy UK’s volunteers. • Being forced to cancel the face–to– as proofreading articles, I have
With everyone’s lives in flux, it would face training we had planned for enjoyed being a part of all the lively
have been completely understandable if March and later in the year. When discussions that take place when
‘volunteering’ had suffered. But not so at we first made this decision, it was we meet to decide on the
Colostomy UK. In fact, quite the opposite devastating as so much work had magazine’s contents.
happened as our dedicated team rose gone into preparing for it. Thankfully, • Emma arranging the Zoom meetings
to, and overcame, the many challenges we were able to salvage this! to keep us volunteers in touch with
Covid–19 posed us. As Volunteers’ • Not being able to meet our each other and the Colostomy UK
Manager, I will always be proud of the volunteers in person. Zoom is great, team and Richard and team for the
fact that we kept supporting ostomates but it’s not quite the same as being excellent Tidings which has kept us
in need not despite the pandemic but with people in the flesh. informed in these uncertain times.
in spite of it! I thought I would share my
• Having to suspend many of our
‘Highs’ and ‘Lows’ for year and also the
‘Highs’ and ‘Lows’ of our volunteers.
volunteering activities, such as Lows:
open days. • Not being able to see and help
My Highs: • Not managing to always meet the
expectations of new volunteers and
ostomates face to face at things like
open days and support
• Seeing a national focus on people interested in volunteering group meetings.
volunteers and celebrating the with us. • Receiving Stoma helpline calls from
merits of volunteering and what And here are some from our volunteers: ostomates who have run out of bags
volunteers can achieve supporting
people in need. Highs: and then get angry when I’m unable
to magic them some fresh supplies!!
• Connecting with our volunteers via • Hearing the immediate change in • The pandemic made me realise how
Zoom/video. Being able to bring the voice of a caller to the Stoma vulnerable we all are and how easily
people together in this way was helpline, you can hear the tension the balance of normality can tip in
completely unexpected. in their voice reduce. You may the wrong direction.
• Getting to know our team of not always be able to solve their
volunteers better (helped by problem but just listening to what So there you have it!
the above!!). they have to say and pointing them It has been a real pleasure to work and
• Rolling out Colostomy UK’s in the right direction to help them get to know better Colostomy UK’s
Safeguarding Adults programme, help themselves is priceless for me volunteers and I am looking forward
with a new policy and online as a volunteer. to what 2021 brings. If you would like
training. This has led to greater • During the pandemic just being a to know more about volunteering for
awareness about safeguarding part of Colostomy UK was good, it Colostomy UK, then please drop me an
(what it is, why it is important, is just such a friendly team. e–mail: volunteer@ColostomyUK.org
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 17WELLBEING
Emotion Regulation
and Rumination in
Inflammatory
Bowel Disease:
Assessing the Effecting
of Body Image Perceptions
Bethany Preece
bethany.preece@stu.mmu.ac.uk
What was my reappraisal, within which individuals can
successfully prevent the negative impacts
these processes. It was also interesting to
note that body image can be sub–divided
research? of thought–provoking emotions such
as anger and frustration. This is a more
into satisfaction and dissatisfaction with
one’s own body. Body image is a more
My MSc Health Psychology research hands–on approach to ensure emotions complex variable than one might realise,
dissertation involved exploring are dealt with and accepted rather than due to a combination of factors including
the extent to which emotion and bottling them up. On the other hand, psychology, emotions, and individual
overthinking affected body image it can be defined as a negative control behaviour, thereby indicating the
satisfaction within an Inflammatory of emotions, or expressive suppression, complexity that arises when beginning to
Bowel Disease (IBD) population. Body within which individuals hide and push address this. As a result of IBD becoming
image dissatisfaction can manifest itself down emotions in particularly emotion– a global public health challenge, I was
in several ways and can occasionally eliciting situations, such as during a flare– curious to shed some light on the
make it difficult to form personal relations up or whilst having a bad day at work psychological processes that surround
as well as making social interactions (Cutili, 2014). body image satisfaction within this
daunting. Depending on the severity of community.
Overthinking was pinpointed to be
the dissatisfaction, this can lead to social
defined as rumination in this study, which
avoidance and may impact upon an
individual’s psychological health. Emotion
is considered to be repetitive reflection
of emotionally triggering events and
Why did I conduct
was classified as emotion regulation
techniques, which is the way individuals
can develop into a transfixion on these this research?
thoughts. This can include scenarios such
manage and control their emotions. This Previously, body image dissatisfaction
as excessively pondering the likelihood
is achieved in a number of ways: it may has been linked to unfavourable health
of a flare–up on the day of an important
involve confronting emotions head on outcomes, as well as the worsening of
exam or convincing yourself that your boss
and accepting feelings that accompany other physical symptoms in illnesses
will not enjoy your presentation before
this in mindful way such as diary entries; such as IBD (Nayir et al, 2016). As such,
you have even delivered it. Previous
distracting yourself from truly handling I found it particularly remarkable to note
research has indicated that rumination
emotion by ignoring them; or even being that body image satisfaction, emotion
is more prominent in individuals who
able to prevent negative emotions from
are living with a chronic illness. I was regulation and rumination had never been
affecting your outlook altogether. Whilst
particularly interested in understanding studied collectively within a population of
this is considered similar to the idea of
whether there was any relationship individuals living with IBD. This is because
emotional coping, they are considered to
between rumination levels and body IBD is such an unpredictable disease and,
be separate units. It can be described as
image satisfaction in an IBD community, as readers of Tidings who suffer from it
a positive control of emotion, or cognitive
and how regulating emotion may alter will know, ongoing self–management
18 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORGWELLBEING
is often required to manage symptoms levels of satisfaction with their body additional stress of coping with a long–
and control emotions. It was hoped that image overall. To further support this, term physical illness. The importance
the results from this research could be when individuals were asked if they felt of this research indicates that more
used to inform a potential intervention self–conscious about their appearance, care is needed to address psychological
within which individuals with IBD feel only 8.2% (19) of 231 people in the symptoms within an IBD community.
more readily able to effectively deal with sample indicated they did not feel at A screening tool to determine this at
negative emotion, therefore benefiting all self–conscious. Furthermore, when diagnosis and at regular intervals following
the course of associated physical and individuals were asked if they felt less this may ensure individuals receive the
psychological symptoms. Consequently, sexually attractive as a result of their IBD support they need. It is worth noting
due to the large degree of body image or treatment, 87% (201) of individuals that previous literature has highlighted
research conducted within an IBD agreed with this statement to some extent the degree to which a stoma bag may
community, combined with the fact that (ranging from a little to very much so). influence an individual’s body image
living with IBD can deter positive emotion 53.2% of people rating the account, ‘I ideals, and whilst this is not directly
regulation strategies (Danesh et al, 2015), control my emotions by not expressing addressed within this research it is a way
the current research was incredibly them,’ agreed with the statement to to expand upon this study. Despite this,
important and necessary. varying degrees (whether this be slightly current research promotes the benefits of
or strongly agreeing). This further adopting cognitive reappraisal to tackle
What did I do? corroborates a statement within the emotions and body image complexities.
Furthermore, this research may be the
rumination scale, ‘How often do you think:
The results were obtained by presenting “Why can’t I handle things better?”’ 74.9% stepping stone to ensuring the mental
individuals with three online measures to (173) of 231 individuals displayed some and emotional health of individuals living
complete. This was an anonymous survey, level of agreement with this statement. with IBD is both supported, stabilised,
and individuals could not be identified The most interesting statement however, and nurtured, particularly during these
through their responses. To be included alluded that 93.1% (215) of individuals troubling times. n
in this study, participants were required felt dissatisfied with their body. This
to have had a diagnosis of IBD for at least extends the work of other researchers,
three months, be aged 18 or over and whilst also highlighting that negative
be able to speak fluent English. Everyone emotion regulation strategies are more
who provided responses did so of their prominent within the IBD community.
own free will, and thus volunteered to
provide answers for the study. Participants
were recruited through five IBD–based What is the References
Please contact the author for a full list of
charities sharing the study within their
social media and websites, one of which importance of this references used in this article.
research?
Cutuli, D (2014) Cognitive reappraisal and expressive
was Colostomy UK, who asked eligible
suppression strategies role in the emotion
members of their private Facebook regulation: an overview on their modulatory
group to participate. I also used my own This research indicates the degree of effects and neural correlates. Frontiers in
professional Twitter account. Responses support required for emotional wellbeing System Neuroscience, 8(175), 175–181.
were recorded via the completion of in a long–term condition such as IBD. Danesh, M, Gholamrezaei, A, Torkzadeh, F, Mirbagher,
the Modified Body Image Scale, the This is something that could potentially L, Soluki, R and Emami, MH (2015) Coping
Emotion Regulation Questionnaire, with stress in patients with inflammatory
be addressed directly from diagnosis. IBD
bowel disease and its relationship with disease
and the Ruminative Responses Scale. is a disease that is already associated activity, psychological disorders, and Quality
Ethical approval was obtained from the with a greater developmental risk of of life. International Journal of Body, Mind, &
Manchester Metropolitan University Ethics anxiety and other such mood disorders, Culture, 2(2), 95–104.
Committee on 2 April 2020, (EthOs ID highlighting the importance of regulating Nayir, T, Uskun, E, Yürekli, MV, Devran, H, Çelik, A and
number: 17132) and recruitment spanned emotions. Interventions to target the Okyay, RA (2016) Does body image affect
over a three–month period. Subsequently, adoption of positive emotion regulation quality of life?: A population–based study. PloS
one, 11(9), e0163290.
231 participants aged between 18–77 have previously proven to be effective, and
years (172 females, 58 males and 1 non– emotion regulation training has shown
binary individual) completed the survey continuing success in various settings.
for this project. Building upon previous literature, these
findings demonstrate the importance of
What did I find? addressing body image concerns. This is
because emotion regulation is influential
The data was analysed on a statistical in the ability for an individual to deter
software program to assess the degree negative body image connotations. This
of relationship between body image supports that of previous researchers, who
satisfaction, emotion regulation and indicated that body image concerns and
rumination. Overall, it was found that unhelpful emotion regulation techniques
suppressing emotions was linked to are more prevalent in individuals living
body image dissatisfaction, as well as with a long–term physical illness.
greater levels of rumination. Individuals
who are better able to ease the impacts The symptoms of IBD can produce an
of negative emotions exhibited greater emotional burden on the individual,
body image satisfaction. However, body depending on the severity and the nature
image dissatisfaction was a common of the disease. Although this is still
theme within these findings, showing prevalent within the general population,
that individuals with IBD displayed lower it is to a lesser extent and without the
FREEPHONE STOMA HELPLINE: 0800 328 4257 TIDINGS 61 | SPRING 2021 | 19C O LO S TO M Y U K N E W S
Colostomy UK: campaigns and projec
Libby Herbert
General Manager
E: libby.herbert@ColostomyUK.org
#StomaAware
In the last edition of Tidings I explained how we used World Ostomy Awareness Day in October to launch our new
#StomaAware campaign. Part of this campaign is to educate and work with organisations to ensure they understand the
emotional and practical needs of ostomates. In our view, good education is key to making our society more accessible to all.
With this in mind, it was great to start the ball rolling in early December delivering some #StomaAware training to the team
at Bolt Burdon Kemp (BBK), who are a firm of solicitors I have worked closely with over the past few years. I was delighted to
be joined by Ifrah Mohamed who, as an ostomate, was able to highlight to attendees what daily life is like for somebody living
with a stoma. Our training also looked at why people have stoma surgery and considered the struggles many face afterwards
such as fears about returning to work and using accessible toilets. Iffy was able to explain how important it is after surgery to
get back to ‘normal’ and how doing so can aid long–term recovery and ongoing quality of life.
Our role as a charity is to help reduce the hostility, discrimination and prejudice some ostomates experience. The team at BBK
asked lots of questions and were keen to get a good understanding from Ifrah about her life with a stoma and the impact her
surgery had. Below you will find two articles from members of the BBK team, as well as Iffy’s closing thoughts on the training
session. I hope you enjoy reading them. They show why being #StomaAware is so vital!
make the country more stoma–friendly and fight the stigma that
has caused so much distress.
Last month, therefore, I was delighted to invite Libby Herbert to
my firm, Bolt Burdon Kemp to host a ‘Stoma Aware event’.
My eyes She attended with Ifrah Mohammed (an ostomate she has met
through her work) to educate me and my colleagues about the
were opened basics of having a stoma and the issues that impact a lot of the
people who have one.
Tom Lax
My first experience of someone with a stoma (or someone The feedback I received from all who attended was glowing. We
who I knew had a stoma) was as a trainee solicitor. I attended learned about the small things that could make a big difference
a conference with her, her son, numerous experts and a to ostomates – from stoma–friendly toilets (hook, bin, shelf,
senior barrister. She had suffered an injury due to medical mirror!) to appropriate conduct at airport security. Mostly though,
negligence and the purpose of the conference was to work out we were privileged to an honest, open portrayal of life with a
the value of the claim by discussing the impact of the injury on stoma from several different angles.
her ability to work and care for herself.
Libby spoke with the kind but determined enthusiasm I have
My eyes were opened hearing about the mechanics of the grown to admire since we connected.
ileostomy operation and the lifesaving impact it had had, but
Ifrah’s part of the event was impassioned and inspirational. A
also by the way having a stoma had affected her physically
full–on account of the events leading up to her ileostomy and
and emotionally.
her life afterwards. Authentic, unscripted and impactful. Perhaps
That case settled for an amount in excess of £500,000, which the most incredible part was the story of her pregnancy – doctors
meant that the client’s son could work part time and become his had told her that it would not be safe but she weathered the
mum’s carer. I was inspired to start my career in compensating pain and the risks to give birth to a boisterous daughter we could
victims of medical negligence and captivated by the physical and all hear running around in the background as we sat gripped to
emotional plight of ostomates. our Zoom screens.
Years later I got in touch with Colostomy UK to undertake some After this Rhicha Kapila, a partner at Bolt Burdon Kemp, talked
fundraising for their ‘Fight the Poo Taboo’ campaign. Whilst about her experiences of caring for her mum who recently
doing that, and in the four years since, I have learned so much had a stoma sited as a result of a cancer operation. Hearing
about the small things society can do to improve the lives of the someone we all knew and respected professionally talk about the
thousands of people who have this hidden disability. The biggest resounding personal, hidden impact of these operations hit home
lesson of all being that educating ourselves is crucial if we are to how close we all were to someone who had been affected.
20 | TIDINGS 61 | SPRING 2021 WEBSITE: WWW.COLOSTOMYUK.ORGYou can also read
