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Spring 2020 | Issue 57
Supporting and empowering you
REAL LIVES
Colostomy UK literature range
Have you seen our extensive range of support literature? Suitable for ostomates, family members, friends,
carers and healthcare professionals. Fundraising@ColostomyUK.org
Email
Fundraising@ColostomyUK.org
Email
Fundraising@ColostomyUK.org
Email
0118 939 1537 0118 939 1537 0118 939 1537
Adminline Adminline Adminline
0800 328 4257
To order your complimentary copies contact us by:
0800 328 4257 0800 328 4257
24-hour Stoma Helpline 24-hour Stoma Helpline 24-hour Stoma Helpline
adminline: eMail: website:
0118 939 1537 info@ColostomyUK.org ColostomyUK.org/information
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Supporting and empowering you empowering
society Get in
As well as raising public awareness about touch Caring for
Big or small, we will use
Active Ostomates®
stomas, this campaign is also about ensuring
We hope this short booklet has
Campaigns Colostomates Caring for a person with Colonoscopy Healthy
GNIHTEMOS SOMETHING GNIHTEMOS
your
that the everyday needs of people with
stomas (ostomates) are catered for. Thisgivengift
you ain a responsible,
flavour of Colostomy
sustainable and a stoma and dementia
and projects
means encouraging businesses and UK’s campaigns and projects.
Sport and fitness after stoma surgery
organisations to make practical changes to
impactful way. through the stoma – Nutritional guidelines for
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everything from the signs they use to the
To see all the latest news and
facilities they offer.
If you havejust
developments, any questions
visit a
our website:
a patient’s perspective people who have a stoma
Our successes so far include:
www.ColostomyUK.org member
#ActiveOstomates of our team will be A practical guide for www.ColostomyUK.org www.ColostomyUK.org www.ColostomyUK.org
more than happy to help.
www.ColostomyUK.org
staff in Nursing and
Accessible Toilets
You can find 'stoma friendly' toilets and/or
If you have ideas for future Residential Homes and
campaigns and projects then we
improved signage in the following locations:
would love to hear from you too: those who care for a
Salisbury City, Côte Brasserie,
INTU shopping centres, colostomate at home
Sainsburys, Waitrose, Lord's
Cricket Club, Great Dawley Town
adminline: 0118 939 1537
Council, Tesco, Asda, Medway info@ColostomyUK.org
Park, Morrisons, and many more.
Telephone: 0118 939 1537
fundraising@ColostomyUK.org
Air Travel
Ostomates get anxious going through airport
security. In order to make air travel accessible to
all, we are working with: 24 Hour Helpline:
The Civil Aviation Authority and
0800 328 4257
lots of UK Airports and their
staff, including Heathrow,
Freephone helpline:
Gatwick, Stansted, Edinburgh,
Stoma helpline: Stoma helpline: Stoma helpline:
Birmingham, Manchester, Cardiff
and Bournemouth.
0800 328 4257 www.ColostomyUK.org SUPPORTING AND 0800 328 4257 0800 328 4257 enilpleH amotS ruoh-42 24-hour Stoma Helpline 0800 328 4257
enilpleH amotS ruoh-42
24/7 stoma helpline:
EMPOWERING PEOPLE
7524 823 0080 0800 328 4257 7524 823 0080
www.ColostomyUK.org
0800 328 4257 enilnimdA Adminline enilnimdA
www.ColostomyUK.org WITH STOMAS 7351 939 8110 0118 939 1537 7351 939 8110
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www.colostomyassociation.org.uk gro.KUymotsoloC@gnisiardnuF Fundraising@ColostomyUK.org gro.KUymotsoloC@gnisiardnuF
Fundraising@ColostomyUK.org Fundraising@ColostomyUK.org Fundraising@ColostomyUK.org
Email Email Email
Active Ostomates Campaigns & Caring for Colonoscopy Fundraising Healthy Eating
0118 939 1537 0118 939 1537 0118 939 1537
Adminline
Caring for a person
Adminline Adminline
0800 328 4257 0800 328 4257 0800 328 4257
24-hour Stoma Helpline 24-hour Stoma Helpline 24-hour Stoma Helpline
Sport and Fitness Projects Flyer Colostomates with a stoma and through the Pack
after stoma surgery dementia stoma
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Colostomy Irrigation
Supporting and empowering you Featuring
Supporting and empowering you Featuring After you have provided Supporting and empowering you
for yourand loved ones,youwe
Colostomy Irrigation
• Introduction from Professor Bill Heald CBE – “Since my appointment as President of the Colostomy
Supporting andfrom
• Introduction empowering you
Professor Bill Heald CBE – “Since my appointment as President of the Colostomy
Supporting empowering
Association in 2005, I have been amazed at how many colostomates are unaware of Colostomy Irrigation.” Association in 2005, I have been amazed at how many colostomates are unaware of Colostomy Irrigation.”
hope you will consider a
• Comment from Sue Hatton, Colostomy UK volunteer – “I firmly believe that patients facing an irreversible • Comment from Sue Hatton, Colostomy UK volunteer – “I firmly believe that patients facing an irreversible ZING
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How will a colostomy Colostomy irrigation: Living with a stoma
YOUR
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your gift in a responsible,
colostomy are given the opportunity to discuss colostomy irrigation with their colorectal surgeon and stoma colostomy are given the opportunity to discuss colostomy irrigation with their colorectal surgeon and stoma
care nurse prior to their operation, whenever possible. I also believe that patients offered the opportunity to care nurse prior to their operation, whenever possible. I also believe that patients offered the opportunity to
sustainable and
learn are given support, encouragement and time to adapt to the techniques involved with this method of learn are given support, encouragement and time to adapt to the techniques involved with this method of
call the stoma helpline for: affect me? Colostomy Irrigation Colostomy Irrigation
bowel management.” bowel management.”
• Who can be offered Colostomy Irrigation
impactful way. Information for ostomates
WILL,
• Who can be offered Colostomy Irrigation
An introduction A group of stoma care nurses discuss colostomy irrigation. A group of stoma care nurses discuss colostomy irrigation.
and You
emotional support, experience based SOMETHING SOMETHING
LET'S DO
and their carers
• Reviewing the equipment Colostomy Irrigation • Reviewing the equipment Colostomy Irrigation
Two stoma care nurses review the equipment required for colostomy irrigation. Two stoma care nurses review the equipment required for colostomy irrigation. If you have any questions a
Information for patients before stoma surgery
advice and guidance from a volunteer. • A stoma care nurse introduces – Colostomy Irrigation to a patient
a reference tool for member of our team will be
YOUR
• A stoma care nurse introduces – Colostomy Irrigation to a patient
www.ColostomyUK.org A stoma care nurse discusses colostomy irrigation with her patient.
www.ColostomyUK.org A stoma care nurse discusses colostomy irrigation with her patient. more than happy to help. www.ColostomyUK.org
0800 328 4257
Colostomy
stoma care nurses specialists
Colostomy
An educational DVD
• Experienced Irrigator • Experienced Irrigator
LET'S DO LET'S DO
and You An educational
A film sequence of an experienced patient irrigating at home from start to finish followed by a personal A film sequence of an experienced patient irrigating at home from start to finish followed by a personal
testimonial. testimonial.
LEGACY
Colostomy Irrigation – an alternative method of bowel management
• SCN to SCN discussion Stoma care nurses discuss the film. An inexperienced nurse voices questions about • SCN to SCN discussion Stoma care nurses discuss the film. An inexperienced nurse voices questions about
a reference tool?
colostomy irrigation – these are answered by the other SCNs. The Colostomy UK buddy system is also
24 hours a day and completely free. colostomy irrigation – these are answered by the other SCNs. The Colostomy UK buddy system is also
FUNDRAISING PACK
explained. www.ColostomyUK.org
explained. www.ColostomyUK.org
• What patients say • What patients say
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Registered Charity 17/06/2019 12:04 Page 2
Number: 1113471
A group of four patients (male/female) discuss the benefits of colostomy irrigation and explain how this
procedure has changed their lives.
A group of four patients (male/female) discuss the benefits of colostomy irrigation and explain how this
procedure has changed their lives.
FUNDRAISING PACK FUNDRAISING PACK
Acknowledgements: Kind thanks go to Coloplast and Dansac for making the production of this DVD a reality for Colostomy UK. Acknowledgements: Kind thanks go to Coloplast and Dansac for making the production of this DVD a reality for Colostomy UK.
Kind thanks go to all those who gave their time freely and appeared in both DVDs – Professor Bill Heald CBE. Colostomy UK Kind thanks go to all those who gave their time freely and appeared in both DVDs – Professor Bill Heald CBE. Colostomy UK
Volunteers and colostomy irrigators: Sue Hatton, Judy Colston, Douglas Haywood, Helen McTurk, Martin Robbins and Sarah Volunteers and colostomy irrigators: Sue Hatton, Judy Colston, Douglas Haywood, Helen McTurk, Martin Robbins and Sarah
Squire. Stoma Care Nurses: Juliette Fulham RGN, BSc (Hons) CNS (Stoma Care) Heatherwood & Wexham Park Hospitals NHS Squire. Stoma Care Nurses: Juliette Fulham RGN, BSc (Hons) CNS (Stoma Care) Heatherwood & Wexham Park Hospitals NHS
? and
Telephone: 0118 939 1537
forand
Foundation Trust, Amanda Gunning – CNS (Stoma Care) The Royal Marsden Hospital, London, Emma Maltby RGN, CNS (Stoma Foundation Trust, Amanda Gunning – CNS (Stoma Care) The Royal Marsden Hospital, London, Emma Maltby RGN, CNS (Stoma
Care) Basingstoke and North Hampshire Hospital Hampshire Hospitals NHS Foundation Trust, Hyacinth Thompson RGN, CNS Care) Basingstoke and North Hampshire Hospital Hampshire Hospitals NHS Foundation Trust, Hyacinth Thompson RGN, CNS
(Stoma Care) Queen’s Hospital, Romford, Wendy Osborne MSc, RGN, ENB 216 (Stoma care) Charter Healthcare Nurse Manager fundraising@ColostomyUK.org
clinicalYou
(Stoma Care) Queen’s Hospital, Romford, Wendy Osborne MSc, RGN, ENB 216 (Stoma care) Charter Healthcare Nurse Manager
DVD – an
Coloplast Ltd, Lucy Russell RGN, CNS (Stoma Care) Colorectal/Stoma Care Specialist Nursing Team Norfolk and Norwich Coloplast Ltd, Lucy Russell RGN, CNS (Stoma Care) Colorectal/Stoma Care Specialist Nursing Team Norfolk and Norwich
University Hospital, Norwich. Special thanks go to Monty Taylor – Chairman of Trustees and members of the Board of Trustees at University Hospital, Norwich. Special thanks go to Monty Taylor – Chairman of Trustees and members of the Board of Trustees at
Colostomy UK for supporting this project, Sarah Crane CEO – The Pelican Cancer Foundation, for providing the film venue, Anna Colostomy UK for supporting this project, Sarah Crane CEO – The Pelican Cancer Foundation, for providing the film venue, Anna
Thame – Head of External Affairs and Communications Hampshire Hospitals NHS Foundation Trust Basingstoke and North Thame – Head of External Affairs and Communications Hampshire Hospitals NHS Foundation Trust Basingstoke and North
Hampshire Hospital for permissions. Duncan Wells and Sarah Squire for the voice over recording and scripting. Jane Wood for
You
Hampshire Hospital for permissions. Duncan Wells and Sarah Squire for the voice over recording and scripting. Jane Wood for
nurse specialists (stoma care)
project management, concepts, film direction/editing/continuity and Resolution Television for their patience and project management, concepts, film direction/editing/continuity and Resolution Television for their patience and
Freephone helpline:
alternative method of bowel management
call the adminline for: Freephone helpline:
professionalism.
CUKM005n 03v03r00 Cover | Date of Publication: October 2018 | Registered charity no. 1113471
professionalism.
CUKM005p 02v03r00 Cover | Date of Publication: October 2018 | Registered charity no. 1113471
information packs, ID cards, radar keys, How to contact us How 0800
to contact us
328 4257 0800 328 4257
travel certificates and literature. Write to: Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA Write to: Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA
Stoma helpline:
Copyright ©2014‒2018 Colostomy UK. All rights reserved.
0118 939 1537
Copyright ©2014‒2018 Colostomy UK. All rights reserved.
Stoma helpline: Stoma helpline:
General enquiries: 0118 939 1537 General enquiries: 0118 939 1537
24–hour free helpline: 0800 328 4257 24–hour free helpline: 0800 328 4257
USING YOUR WILL TO HELP 0800 328 4257
0800 328 4257 0800 328 4257
E–mail: info@ColostomyUK.org E–mail: info@ColostomyUK.org
endorsed by
OSTOMATES OF TODAY AND
if we’re not in, just leave a message. Website: www.ColostomyUK.org Website: www.ColostomyUK.org
An educational DVD in association with
www.ColostomyUK.org
An educational DVD in association with TOMORROW
info@ColostomyUK.org Registered Charity Number: 1113471
Supporting and empowering you
Helpline Cards How will a Irrigation Irrigation DVD Irrigation DVD Legacy Flyer Living with
Colostomy Booklet (nurses) (patients) a stoma
affect me?
CUK019 06v00r00 Pain & Discomfort.qxp_CUK019 06v00r00 24/07/2019 10:03 Page 1 CUK017 05v00r00 Parastomal Hernias.qxp_CUK017 05v00r00 11/06/2019 13:40 Page 1 CUK021 06v00r00 Rectal Discharge.qxp_CUK021 06v00r00 18/07/2019 15:10 Page 1
Page 1 CUK023 01v00r00 Sam has a stoma.qxp_Colouring Book 20/11/2019 09:57 Page 1
Supporting and empowering you Supporting and empowering you Supporting and empowering you
Sam has a
Supporting and empowering you
Colostomy UK’s flagship magazine
Tidings, is hailed by ostomates and
healthcare professionals alike for the
one to one Pain and discomfort
following stoma surgery
Parastomal Hernias Rectal discharge Stoma
support and reassurance for YOU
support and information that it provides
your family and for carers following stoma surgery
readers with on a quarterly basis.
www.ColostomyUK.org
www.ColostomyUK.org
Visit our website or call us to sign up
for your free copy. www.ColostomyUK.org www.ColostomyUK.org www.ColostomyUK.org
How to contact us
Write to: Enterprise House, 95 London Street,
Reading, Berkshire, RG1 4QA
Adminline: 0118 939 1537
Stoma helpline: 0800 328 4257
E–mail: info@ColostomyUK.org
Website: www.ColostomyUK.org
Stoma helpline:
Stoma helpline: Stoma helpline:
0800 328 4257 Stoma helpline:
0800 328 4257 0800 328 4257
CUK007 10v01r00
Date of Publication: July 2019
Copyright ©2012‒2019 Colostomy UK
0800 328 4257
Registered charity no. 1113471
Supporting and empowering you Produced by the Colostomy Association
Supporting and empowering you
One to One Ovarian Pain & Parastomal Rectal Sam has a stoma Stoma friendly
(join us) Flyer Cancer and Discomfort Hernias Discharge (colouring book) toilet guideline
stomas and stickers
CUK013 06v00r00 Stoma Reversal.qxp_CUK013 06v00r00 18/07/2019 15:25 Page 1 CUK014 10v00r00 Travel Advice.qxp_CUK014 10v00r00 13/06/2019 08:55 Page 1 TC001 07v00r00 Tri-Charity Leaflet - Did you know.qxp_TC001 07v00r00 30/04/2018 11:05 Page 1
CUK001 06v00r00
Spring 2020 | Issue 57
Supporting and empowering you Supporting and empowering you Supporting and empowering you
Stoma
Support: We provide practical and
emotional support and advice to people
Home delivery without the worry.
• Dedicated
Dedicated
• Monthly
• LargeLarge
personal
Monthly
selection
including
including
personal
stockstock
advisor
advisor
and well-being
selection
mattress
and well-being
“check-ins”
of complimentary
of complimentary
mattress
protectors
“check-ins”
itemsitems
protectors
Premium Ostomy Support Wear
support
• We deliver
We deliver
all your
all stoma
your stoma
products
products
and your
and your ZZZFRPĆ]]FRP
living with a stoma, their families,
Stoma Reversal Travel Advice
medication
medication
prescriptions
prescriptions
in oneindelivery
one delivery
LQIR#FRPĆ]]FRP
carers, and friends. Freephone: 0800 031 5401 0113 2662096
or visit www.bullens.com
Travel Certificate
Empowerment: The aim of our day–
to–day work, projects and campaigns,
is to empower people with stomas to
Colostomy UK is a charity that SUPPORTS and
charities
reach their potential. UK: 0800 378 846
Having a stoma should not prevent
Scotland: 0800 783 7148
Advocacy: We act as a voice for people
Important information for travel authorities and their staff.
EMPOWERS people living with a stoma, their
Dispensing and Home Delivery Service
with stomas, raising awareness of the
you from travelling at home or abroad issues that they face and engaging with
organisations to bring about positive www.fittleworth.com
FREEPHONE 0800 626388
(UK only; Monday to Saturday, 9am – 5pm)
The bearer of this letter has a stoma.
families, carers and friends.
Email us: enquiries@saltsmedilink.co.uk
in the
outcomes. Visit:
Follow us:
www.saltsmedilink.co.uk
@SaltsMedilink SaltsMedilink
YOUR TAILORED,
www.ColostomyUK.org www.ColostomyUK.org Registered trade mark of Salts Healthcare Ltd. Medilink® is
®
What is a stoma? DISCREET DELIVERY SERVICE part of the Salts Healthcare Ltd. Group.
A stoma is a surgically created opening in the abdomen through which the bowel and/or
www.ColostomyUK.org
bladder is diverted so that bodily waste can be collected in a bag. A stoma is a ‘hidden’
UK
condition.
Website:
For free samples or more information: www.securicaremedical.co.uk
If you need to search the bearer, then please: FREEPHONE 0800 028 2144
Email:
· Be sensitive and empathetic. Team Colostomy UK are the
(England & Wales) or
FREEPHONE 0800 626388 (Scotland) info@securicaremedical.co.uk
· Offer to conduct the search in a private room. volunteers, fundraisers, samples@salts.co.uk
· Do not separate the holder from their medical supplies as they may need them. www.salts.co.uk Freephone: 0800 585 125
champions and rugby league
· Allow the holder a chaperone. team of our charity
· Wear gloves.
Want to get involved?
Call us: 0118 939 1537
NAME:
PASSPORT NUMBER: Enterprise House, 95 London Street,
Reading, Berkshire RG1 4QA
ADDRESS:
Adminline: 0118 939 1537
E–mail: info@ColostomyUK.org
Website: www.ColostomyUK.org #ActiveOstomates #TacklingTheStomaStigma
24–hour freephone
DOCTOR’S NAME AND ADDRESS: SURGERY STAMP: stoma helpline:
0800 328 4257
How to contact us
Write to: Enterprise House, 95 London Street, Reading, Berkshire, RG1 4QA
Stoma helpline:
Stoma helpline:
Stoma helpline:
Adminline: 0118 939 1537
Stoma helpline: 0800 328 4257
0800 328 4257
E–mail: info@ColostomyUK.org
0800 328 4257 Website: www.ColostomyUK.org
0800 328 4257 three organisations
one aim : you
Stoma Helpline: 0800 328 4257
www.stomasupport.org We want hidden conditions to be UNDERSTOOD and ACCEPTED by all,
Colostomy Association Ltd trading as Colostomy UK, registered office is at Enterprise House, 95
London Street, Reading, RG1 4QA
Registered charity number: 1113471. Company number 05623273. Adminline: 0118 939 1537 CUK001 07v00r00
info@colostomyuk.org
This certificate is in no way a medical endorsement that guarantees the holder has a stoma. It is
Supporting and empowering you Supporting and empowering you so that people can reach their potential.
Date of Publication: November 2019
intended to be used as an aid for airport staff.
Copyright ©2012–2019 Colostomy UK
Registered Charity No: 1113471
Stoma Tidings Travel Advice Travel Tri–Charity Welcome Pack
www.ColostomyUK.org
ostomates
and empowering
Reversal Magazine Certificate Leaflet
Supporting
Our value
Support: W
2 | TIDINGS 57 | SPRING 2020 WEBSITE: WWW.COLOSTOMYUK.ORG
support tai
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
General Manager
Libby Herbert
Colostomate & Volunteer
Jackie Dudley
Colostomate & Volunteer
Rosemary Brierley
Data Analyst & Publishing
Arvind Anand It is Friday 31 January and as I write this the clock is ticking down the hours to 11
pm and Brexit (finally). I for one am glad it’s over. I say this not with any intention of
making a political point about the rights and wrongs of leaving the European Union,
but simply because after three years of incessant press coverage I’m sick to death of
hearing about it. I fear though that rather than being the end, all the 31 January will mark
is the start of a new chapter of intense media speculation! As my father said to me: “It’s
worse than the Profumo affair, the press didn’t shut up about that either”.
But as the media gears itself up for another feeding frenzy, life goes on in the real world.
And if ever you wanted an insight into what that life might look like, then look no further
than this edition of Tidings. Our cover story looks at a subject that rarely gets much
attention: the challenges faced by parents who have a child with a stoma. You can see the
young ostomate from this story on the front cover! We have two other Real Lives’ stories.
Lynn Farmer talks about how she coped with being told she was too high risk for stoma
surgery. We also catch–up with Garry Howe whose story first appeared in Tidings a couple
of years back and learn about his recent exploits motorcycling around Spain.
I’m sure that people will be pleased to hear that we have ‘Dear nurse’ back again, with Tina
Maddams answering questions on the issue of rectal discharge. Staying with healthcare
professionals, Lisa Hall, who is a community stoma nurse working in the Bradford area,
has written a really interesting article about the religious and cultural needs of patients
she sees. This is a very informative piece and timely too, given that Ramadan starts on
23 April. We have Colostomy UK’s volunteers who irrigate and irrigators from our private
Facebook group to thank for this edition’s irrigation article. Together they have contributed
a whole range of top tips. There is something for experienced irrigators and those who
have just started (or are thinking about) this method of stoma management.
As usual there is a Colostomy UK news update and Giovanni gives us the lowdown
on fundraising and our Active Ostomates project. We also have a new feature from the
Colostomy UK team. Emma Howell our Volunteers Manager talks about why volunteers
are so important to us and shares some of the things our volunteers get up to and say! To
Tidings Magazine: round things off we have two further articles. Jane Green, who is an area co–ordinator for
The views expressed by the contributors are not Ehlers–Danlos Support UK, explains why some people with the syndrome go on to require
necessarily those of Colostomy UK. Great care has
been taken to ensure accuracy, but Colostomy UK stoma surgery. Bob Bailey from the Romanian Ostomy Patients Support Foundation
cannot accept responsibility for errors or omissions. (ROPSF), who Colostomy UK have worked with for many years, gives an update on the
foundation’s work, including some recent nurse training delivered in the country. As you
Disclaimer:
0 CUK Folder.qxp_CUK001 06v00r00 20/02/2019
The display, description or demonstration
10:02 Page
will1see, although stoma care in Romania has changed for the better since ROPSF’s first
of products and services or the inclusion of involvement in the country back in the 1990s, it still has a long way to go.
advertisements, inserts and samples within Tidings
Magazine does not constitute an endorsement or Best wishes and happy reading!
recommendation of these products and services by
Colostomy UK.
©Copyright 2020 Colostomy UK. All rights reserved.
No part of this publication may be reproduced,
stored in a retrieval system, or transmitted, in any
form or by any means, electronic, mechanical,
photocopying, recording or otherwise, except as
permitted by the UK Copyright, Designs and Patents Home delivery without the worry. Richard Biddle
Act 1988, without the prior written permission of Editor,
es the publisher. All marks acknowledged. • Dedicated
Dedicated
• Monthly
personal
Monthly
personal
stockstock
advisor
advisor
and well-being
and well-being
“check-ins”
“check-ins”
Premium Ostomy Support Wear
Writer & Researcher
• LargeLarge
selection
selection
of complimentary
of complimentary
itemsitems
We provide compassionate including
including
mattressmattress
protectors
protectors
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FREEPHONE HELPLINE: 0800 328 4257 • We deliver
We deliver
all your
all stoma
your stoma
products
products
and your
and your TIDINGS 57 | SPRING 2020 | 3
ilored to the needs of the medication
medication
prescriptions
prescriptions
in oneindelivery
one delivery
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REAL LIVES
m.0103
4 | TIDINGS 57 | SPRING 2020 WEBSITE: WWW.COLOSTOMYUK.ORG
CONTENTS
Contents
Colostomy UK news
6 Colostomy UK: news
Colostomy UK is a national charity that 16 Colostomy UK: volunteers
offers support and advice to people living
with a stoma, their families, carers, and 32 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 12 …tea at The Ritz Lynn Farmer
and other interests and give them the
confidence to take up fresh challenges.
We are advocates for ostomates’ rights 15 Above the Clouds Garry Howe
and their voice on the bigger issues.
Our campaigns raise awareness and
encourage organisations to make their
22 The Parents’ Story
facilities more inclusive. SUPPORTING
and enhancing ostomates’ wellbeing is at 34 Romanian Ostomy Patients Support Foundation
the core of everything we do.
Bob Bailey
How to contact us
Stoma helpline for:
Emotional support, Wellbeing
experience based advice and
guidance from a volunteer. 9 Irrigation and you: general tips Volunteers’ contribution
0800 328 4257
24 hours a day and completely free.
28 Colostomy UK: active ostomates®
Adminline for: 31 Dear nurse Tina Maddams
Information packs, ID cards,
RADAR keys, travel certificates and
literature. Fundraising
0118 939 1537
If we’re not in, just leave a message. 38 Colostomy UK: focus on fundraising
info@ColostomyUK.org
To request (or cancel) your quarterly
copy of Tidings Support
0118 939 1537
info@ColostomyUK.org 19 Ehlers–Danlos syndromes (EDS) and/or Hypermobility
spectrum disorder (HSD) and stomas – Jane Green
Editorial Enquiries
Letters, articles or other submissions 26 Your letters and e–mails
Colostomy UK
Enterprise House, 95 London Street
36 Thinking about the religious and
Reading, Berkshire, RG1 4QA cultural needs of stoma patients Lisa Hall
info@ColostomyUK.org 41 News from support groups across the UK
Advertising enquiries 43 Stoma care open days
For a media pack and advertising
rates: 0118 918 0500 43 National support organisations
44 Stoma support groups in your county
Find us on Facebook Badge CMYK / .eps
Arvind.Anand@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 £20 (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 40
of a warm welcome! for donation form.
You can also donate via our website www.ColostomyUK.org/donate
or by calling us on 0118 939 1537
FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 57 | SPRING 2020 | 5
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
British Health Trade
Although you won’t be reading this until March, I’m still going to start by saying a Association (BHTA)
happy New Year to all our readers. Before bringing you up–to–date with what we’ve
been doing in the first months of 2020, I thought you like to see some pictures from Scotland conference
the team Christmas dinner. Sadly not everyone was able to come along, but we all had
a great time nonetheless!
ˆ We were pleased to attend the above
in January. The theme for this year’s
conference was twenty years of devolution
and what it has meant for Scotland.
Amongst the speakers was stoma care
nurse Angie Perrin who gave an interesting
talk explaining the importance of the
Association of Stoma Care Nurses (often
referred to as ASCN) and the role that
stoma care nurses have in supporting
patients both pre and post–surgery.
Scottish Stoma
Forum
Luckily the BHTA conference coincided
nicely with the Scottish Stoma Forum in
Glasgow. This saw representatives from
all three of the main stoma charities,
healthcare professionals and the stoma
care industry come together to discuss
the latest challenges and trends in
stoma care in Scotland.
6 | TIDINGS 57 | SPRING 2020 WEBSITE: WWW.COLOSTOMYUK.ORG
C O LO S TO M Y U K N E W S
A January visit to
Westminster We are hiring:
Marketing and Communications
Manager – Full time – based in
Reading, Berkshire
Do you have the vision to develop the marketing and
communications strategy for our growing national charity and
the drive to manage and deliver it, ensuring buy–in along the
way from all stakeholders?
This is a senior position, suitable only for high–calibre,
hard–working people, who are educated to degree level or
equivalent and have a minimum of three years marketing
and communications experience. The marketing and
communications manager is responsible for the charity’s
website and social media platforms. Hence high–level
computer skills and design skills are a requirement of the role,
along with an in–depth technical knowledge of popular social
media platforms.
On a day–to–day basis you will be creating written content for a
variety of audiences and suitable for a range of different media.
As such, you must possess exceptional written skills, effective
Thanks to an invite from Martyn Cheney of Bramley Buffaloes, proof reading and a keen eye for a misplaced comma. A gift for
Giovanni, our Fundraising and Development Manager, along spotting and telling stories in compelling and informative ways
with myself and our president Ian Daniels FRCS, attended the will be advantageous.
All Parliamentary Rugby League Group annual dinner. This great
For a full job pack, please e–mail the recruiting manager Libby
networking event gave us the chance to raise awareness about
Herbert: libby.herbert@ColostomyUK.org with a covering
stomas and what it is like to live with one, with MPs, as well as
letter.
people from the worlds of rugby league and the media.
We also want to recruit two
Respond and Pelican Health trustees (these are unpaid positions)
awareness campaign 1. Fundraising trustee: The overall role of a Fundraising
trustee is to provide strategic oversight of Colostomy
UK’s fundraising and communications campaigns,
making sure these are carried out in legal, honest and
accountable ways. Act as a mentor to our Fundraising and
Development Manager & Marketing & Communications
Manager to drive our charities fundraising activities at
strategic level.
2. HR trustee: To provide strategic oversight of Colostomy
UK’s human resources, working with the Trustee Board
and General Manager to develop policies and practices
L–R Guest speakers: David, Amber, Allan, Angelina, Keith, Jake and Rachel
in line with the charity’s objectives. The post holder will
be responsible for assessing the risk and measuring the
We were thrilled to be invited by Respond and Pelican Health to impact of HR interventions, ensuring the charity meets its
the ‘kick–off’ meeting, in which they called for Cardiff to lead the legal obligations while at the same time taking account
way in raising awareness through their campaign ‘Support the
of the impact on our beneficiaries, volunteers and
need for greater understanding for people living with a stoma and
employees. The post holder will be expected to provide
invisible illnesses’. It’s great to see others driving change too. There
HR advice and guidance and will ensure Colostomy UK
was a fab panel of guest speakers too, raising awareness of every
adheres to current best practice.
day issues faced by ostomates. #BeTheChange
E–mail:
Libby Herbert
libby.herbert@ColsotomyUK.org if you are interested.
General Manager
FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 57 | SPRING 2020 | 7
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WELLBEING
Irrigation and you
Do you irrigate? If not, are you interested
in trying? If you would like to try irrigation you
should first contact your stoma nurse to see if
you are a suitable candidate. If you get the go
ahead they will arrange a time to teach you. For
more information see the Colostomy UK website
or order our Colostomy Irrigation and You DVD
using the form on page 21.
If you have any questions, comments or experiences of irrigation
you’d like to share please write to me at Colostomy UK or send an
e–mail to: Richard.Biddle@ColostomyUK.org
In the last edition of Tidings, stoma care nurse specialist Ambra v Take your time. Don’t rush the process and allow some
Berinara, took us ‘back to basics’, explaining what irrigation is, resting time afterwards for any residual output.
who can and can’t irrigate, and the pros and cons of managing v Develop a routine – morning or evening, whichever best
your stoma in this way. The article was very well received and suits your lifestyle. Have things on hand to keep yourself
prompted a number of our readers to get in touch, with a range occupied (iPad, book, phone, radio etc).
of queries and general ‘irrigation’ enquiries. Thankfully, with
v It’s important not to get dehydrated when you irrigate, so I
many of our volunteers being irrigators, we have a wealth of
always drink a 500ml bottle of water while I am irrigating. I
experience to draw on!
then fill the empty bottle with tap water and use it to rinse
Because of this, I thought it would be a good idea to follow up the sleeve. I find this much easier than using a jug.
Ambra’s piece with a selection of top ‘irrigating’ tips from our v My top tip is to drink, drink, drink!! Dehydration is the enemy
volunteers. I also asked for help from members of our private of irrigation.
Facebook group who irrigate. The response was great…so great in
v Use nice comfortably warm water, too cold won’t work and
fact that I haven’t been able to list them all. As you will see, there’s
too hot may cause damage.
a broad range here, from words of advice for absolute beginners,
through to tips and things to bear in mind when irrigating on v I put K-Gel on the end of the cone before inserting.
holiday and in foreign countries. v Stretching your arms up towards the ceiling when you think
your output is finished – you may encourage the last output.
General tips v Place left hand on right side of abdomen, then place right
hand on top of left hand and firmly stroke across the
v When you first start irrigating, perseverance is the name of abdomen from right to left a few times. Do this during the
the game – but it’s worth the effort! irrigation process.
v During training my stoma care nurse said that if I preferred v When the sleeve is rinsed, dry the outside and roll it up.
the 48–hour method, then to set up my routine for this Secure with pegs top and bottom. I then put on my bath
from day one, irrigate every other day and not be tempted robe and maybe make the bed, put some washing in the
to irrigate in between because of breakthrough. I followed machine, hang washing out. If there is any more output it
her advice. It took about three months of varying degrees of will be released.
success until I could say it worked. v One thing I do when irrigating is take my portable television
v It’s very important to relax while irrigating: good posture, no into the bathroom which allows me to catch up with what I
slouching, but inwardly relaxed. If you are too tense you may have missed as well as pass the time.
struggle to let the water in. CONTINUED ON PAGE 10, COLUMN 1
FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 57 | SPRING 2020 | 9
WELLBEING
CONTINUED FROM PAGE 9 COLUMN 2 v Take all your supplies in hand luggage, splitting them with a
partner if necessary.
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005p 02
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irrigation gear in front of me. It folds up flat and goes in the
n Patie
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broom cupboard afterwards! hand luggage and one in the hold luggage.
Featurin
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• Introdu
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g output, look at diet Thank you to everyone that sent me their tips. I hope people have
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An educ
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You can warm this to the right temperature, by putting the DVD in
associa
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bottled water (still in its bottle) in a sink filled with warm
water.
Support Colostomy UK when Easy Fundraising
you shop with Amazon
Easy fundraising is a website that allows you to donate to
Colostomy UK at no extra cost to you while you shop with
hundreds of the UK’s top High–street brands.
All you need to do is:
v Register as a supporter on the Easy Fundraising
website and
v Make sure that Colostomy UK (Colostomy
Association) is added as your supported cause.
v You can then accumulate donations while you shop
Do you shop on Amazon? 0.5% of every order you place with any of their partner retailers.
will go to Colostomy UK if you nominate us as your For more information or to register just visit:
chosen charity. Just log into your account or create one at
easyfundraising.org.uk/causes/colostomyassociation
https://smile.amazon.co.uk and search for Colostomy
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you shop. It’s as easy as that!
10 | TIDINGS 57 | SPRING 2020 WEBSITE: WWW.COLOSTOMYUK.ORGREAL LIVES
Small changes,
big impact
Pelican & Respond Healthcare are behind a movement to improve the lives of
people living with stomas. Campaigner Amber Davies explains why
Those who live with a chronic illness The group is currently working with the
know all too well that it isn’t just the physical Welsh Government to replace the current
symptoms that can present challenges. Very wheelchair symbol to reflect the fact that not
often, a lack of public understanding can all health issues are immediately visible.
mean that everyday life suddenly becomes
Waste collection is another issue.
laden with unnecessary obstacles.
“Because of my stoma, I use up the
This is especially true for people living with space in my bin very quickly, which
a stoma – an opening in the abdomen can often leave me facing a fine from
that allows waste to be collected outside the council,” Davies explains. The
the body in a bag. However, with the help group is calling for the widespread
of UK-based health companies Pelican adoption of specialist collections
Healthcare and Respond Healthcare, a that only a handful of areas
new action group has been formed by already offer. “There has to be a
those affected by the condition to lobby greater recognition of the needs
for changes that could have a of people living with a stoma.”
significant impact on their Mat Stratton, MD of Pelican
day-to-day lives. and Respond agrees: “We
need more education and a
Even changes as seemingly
higher level of awareness.
minor as altering toilet
People are experiencing
signage could bring untold
issues every day that can be
benefits, explains group
tackled positively, so we’ll
member Amber Davies
be working with charities
(right). “I’ve experienced
and associates to form one
negativity because of
unified voice in calling for
my condition. When
change.”
using accessible toilets,
people have been
verbally abusive because
they think they aren’t
#BeTheChange
pelicanhealthcare.co.uk
for me, and I’ve even been
questioned by security guards.” respond.co.uk
FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 57 | SPRING 2020 | 11REAL LIVES
…tea at
The Ritz
Lynn Farmer
Over the years I’ve learned that while each person’s stoma journey is unique, they nonetheless share some common elements.
One of these is the sense of shock, followed by fear and foreboding that accompanies being told stoma surgery is necessary.
Apart from those whose surgery was done in an emergency, I have yet to meet an ostomate who can’t remember that conversation with
their consultant, that journey home afterwards, those dark days that followed. Many speak of mixed emotions. On the one hand there
is hope that the surgery will alleviate or end years of suffering. On the other is dread of the surgery itself, doubts about whether it will
be survived and, if so, what life will be like afterwards. Imagine then, riding this roller coaster and doing your best to mentally prepare,
only to be told some weeks later that, on reflection, the surgeon feels you are too high risk to operate on. This is what happened to Lynn
Farmer and this is her story.
Lynn was born with Poland Syndrome, which wasn’t diagnosed When Lynn saw her consultant next they discussed the surgery
until she was 22. This is a birth defect outwardly characterised by at length and, because of Lynn’s complex health issues, it was
under–development of chest muscle and short webbed fingers on arranged that she would also see the anaesthetist to discuss the
one side of the body. The syndrome is very rare and the causes risks from this perspective. Lynn says that this latter meeting was a
are not fully understood. Current thinking is that the blood supply lengthy one, but the outcome was encouraging. The anaesthetist
is interrupted before birth. Beyond its more obvious physical explained that while Lynn was high risk, things could be put in place
manifestations, people with the syndrome can suffer from other to allow the surgery to go ahead. Although Lynn was obviously
problems including abnormalities to the gastrointestinal tract. concerned, her outlook was positive. She was now seeing the
Lynn, who celebrates her 50th birthday this year, started to suffer surgery in terms of it being the light at the end of a very long
problems with her bowels in her mid–30s. She was variously told tunnel. But, the letter that arrived in the post, thrust Lynn back into
that she had irritable bowel syndrome, diverticular disease and the darkness. Rather than being a date for her op, it turned out to
a slow transit bowel. No overt connection was ever made with be from her consultant, saying that on reflection she considered
Poland Syndrome. Her treatment, which included antispasmodic Lynn to be too much of a risk to proceed. In her view the most
tablets and various changes to diet, proved ineffective and over likely outcome would be Lynn in intensive care on a ventilator,
time her symptoms got worse. with her family having to decide when to switch off the machine.
By 2017 Lynn had reached crisis point and was living with the When I spoke to Lynn, it was clear, even now, just what a
embarrassment of faecal incontinence. Indeed it had got so bad, that devastating blow this news was. But, as Lynn said, there was little
in the end she was wearing bulky incontinence pads, incontinence she could do. She thought it would be selfish to put her family in
pants and then ordinary pants on top, just to make sure she didn’t such an appalling position. Likewise, she felt that she must bow
leak onto her clothes. With treatment options exhausted, Lynn was to the judgement and expert knowledge of her medical team.
eventually referred to a colorectal surgeon. She suggested trying a Once Lynn had got over the initial shock, she vowed to get on
sacral nerve stimulator, but warned Lynn that if this didn’t work, with her life and make whatever adjustments were necessary.
then a colostomy was the only option. Lynn left the consultation However, in the next 12 months her symptoms got even worse.
in shock, but also optimistic that the stimulator would work. When She remained incontinent and started to suffer what she describes
it didn’t and her symptoms continued to worsen, Lynn started to as ‘bowel explosions’. It wasn’t long before Lynn was housebound
research colostomies and began the process of coming to terms as she was so frightened of getting in a mess. Even at home it was
mentally with what the future might hold. difficult, with the number of accidents she was having. Beyond
12 | TIDINGS 57 | SPRING 2020 WEBSITE: WWW.COLOSTOMYUK.ORGREAL LIVES
the physical, the mental toll this took on Lynn was considerable. looking forward to being discharged. Sadly, this was slightly delayed
Alone at home, with plenty of time to reflect on her situation, Lynn because Lynn got hospital acquired pneumonia (a known risk as
described to me being an “utter mess”. But it was also during this she is a severe asthmatic) and had an Addisonian crisis (a rare and
period that Lynn decided to try and act. Aware that she couldn’t potentially fatal condition where the adrenal glands stop working
continue to live as she was, she came to the conclusion that,
properly), but both eventualities had been prepared for. And, after
regardless of the risks, the issue of stoma surgery needed to be re–
the speedy intervention of IV antibiotics and hydrocortisone, Lynn
visited. She thus wrote (what turned out to be a number of letters)
pleading with her consultant and anaesthetist to reconsider. Lynn recovered and was discharged on day eight.
didn’t stop there either. Having set surgery as her goal triggered Although the expression ‘and she never looked back’ is over–used,
a fight back of another kind. Lynn decided to get fit for surgery. it is one that aptly applies in Lynn’s case. When we chatted at the
Despite her ongoing problems, she found the courage to go out
end of January she was doing remarkably well for someone just
again and joined a gym, with the idea of losing weight, getting
five months post–op. Like all new ostomates she has had her fair
fitter and reducing the ’surgical risk’. Quite where Lynn found
the strength to do this remains a mystery, even to her. Perhaps share of hiccups, but her quality of life is incomparable with just
it was that innate survival instinct we seem to possess, ‘kicking eight months ago. She is no longer housebound and has recently
in’ and unleashing some inner strength. What Lynn is sure about started swimming and aqua aerobics, something that she used
though, is that regaining some control of her destiny, helped her to love as a younger woman and thought she had lost forever.
to heal mentally. This improvement was boosted greatly when But Lynn is also realistic. She admits that she has days when she
her medical team agreed to proceed with surgery. To quote Lynn feels low, both physically and mentally. Her coping mechanism for
directly: “To say I was happy was an understatement, which these is to remember how things were and how they are now. In
I know might sound strange that I was happy about going into
July last year she struggled to leave the house and her future was
surgery, but this was my last chance of some sort of a normal life“.
unclear, now she is looking forward to enjoying a birthday tea at
With a High Dependency Unit (HDU) bed booked and ready, Lynn The Ritz with her two sisters, one of whom is coming over from
went down for a loop colostomy on 7 August 2019. Lynn says she Australia for the occasion.
went into theatre with a positive attitude telling her medical team
(and herself) that she would be fine. Of course she was nervous, Lynn wanted to tell her story, because reading some of the recent
but given what had gone before and the circumstances in which stories in Tidings she recognised her struggles in the struggles of
she had been ‘existing’ it seemed to her that the light at the end of others. She drew strength from these. It is her hope that people
the tunnel had been rekindled. She looked forward to the promise will benefit similarly from reading hers, even if it is nothing more
of a new chapter in her life and being able to arrange her 50th than to realise that they aren’t alone. ■
birthday celebration in 2020. Lynn’s surgery went well. In fact, it
took less than two hours and the HDU bed wasn’t needed. By day Written by
six she was able to change her bag, was gaining confidence and Richard Biddle
National Key Scheme (NKS) Radar Key
Photo ID Card
and Photo Identity Card
The Colostomy UK photo ID card
can be useful if challenged To obtain a key or a photo identity card please complete the
when using accessible toilet form and declaration. Make your cheque payable to
facilities. Colostomy UK. Return all required items to:
Colostomy UK, Enterprise House, 95 London Street,
Halfx3 14v00r00 Photo ID Application | Date of Publication: November 2019 | Copyright ©2018–2019 Colostomy UK | Registered charity no. 1113471
To apply for a Photo ID card, Reading, Berkshire, RG1 4QA
complete the form opposite and
(If you have any queries or would like to pay by credit card, please contact Colostomy UK office:
return it to Colostomy UK for
Telephone: 0118 939 1537 or Email: info@ColostomyUK.org)
processing with the enclosures
listed below: National Key Scheme – Key and photo ID card purchase
• A copy of your prescription
Please cut along the dotted line and return to the address on this form – thank you
or delivery note as proof of Title: Please tick as appropriate:
eligibility
Name: I would like to receive a key £3.50
• Passport photo x 1 (including postage and packing).
Address:
• Payment – cheque or I would like to receive a photo ID card for
£6.50 (including postage and packing) and
credit card*
enclose a passport photograph.
*Note: Credit card payments Postcode:
NOTE: Please send a copy of your prescription/
can be taken over the recent delivery note as proof of eligibility
Tel:
telephone if preferred, ensure and make the cheque payable to:
the above are sent in the post Colostomy UK.
Email:
in advance. For payment by credit card, send your
documents in the post with a contact
Alternatively, the form can be DECLARATION: I declare that the individual named above is telephone number, we will then call you
downloaded from our website: chronically sick, has a disabling condition or has had a bowel or to take a card payment when received.
bladder diversion that necessitates the use of accessible toilet
www.ColostomyUK.org facilities. The key is for the personal use of the above named
Allow maximum of 10–14 and their designated carer only.
days for delivery.
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Signature of self or carer: Date: / /2020 T57
FREEPHONE HELPLINE: 0800 328 4257 TIDINGS 57 | SPRING 2020 | 13You can also read
