Confidence and the battle to get active again - Colostomy UK
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1 REAL LIVES
Summer 2021 | Issue 62
AWA R D -W I N N I N G
Supporting & empowering ostomates
Confidence
and the
battle to get
active again
ED ROWLAND, WITH
RICHARD BIDDLE
SHARON MORRIN SUE LENNON
Emergency stoma Let’s talk
Real stories
surgery during lockdown about Real
sex S TOMA HEL PL
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2 REAL LIVES
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F RO M T H E E D I TO R I A L T E A M 3
Dear readers
Editorial Team Welcome to our new look prescription services is on the minds of
Tidings which, as ever, is some readers. To find out more about
Editor, Writer & Researcher
this and its likely impact on patients
Richard Biddle packed with all the features turn to page 7 of Colostomy UK news.
Creative Editor & General Manager and articles you love! In our news pages, you will also find
Libby Herbert
details of a survey we are conducting
Marketing & It’s tempting to kick off by talking about the service ostomates receive
Communications Manager about the pandemic, but as things in from companies that manufacture
Lucinda Mitchell the UK seem to be moving in the right and deliver stoma products. If you have
direction as I write this, I’m not going time, then please complete this. You
Senior Stoma Care Nurse Specialist
Ambra Bertinara
to tempt fate. All I will say though, is can do it online or via the tear-out
that the Colostomy UK team intend survey form on page 8. Lastly, on page
Colostomate & Volunteer to start a gradual return to our offices
Jackie Dudley 36 you will find a ‘teaser’ about our
(indeed it may be underway by the upcoming September challenge…
Colostomate & Volunteer time you read this). Although this
Gillian Cowell comes with the pain of having to So, what else lies in the pages ahead?
Data Analyst & Publishing travel to work each morning, it’s fair In Dear nurse, Mark Johnston talks
Arvind Anand to say that everyone (even those who about pancaking. We also have an
claim otherwise) is glad. It signals the important article from Sue Lennon
resumption of office banter and that who is a psychosexual therapist. Sex is
buzz you get working with like-minded a topic which, to my mind, isn’t given
and enthusiastic people. Somehow the attention it deserves. As a charity,
this is never the quite the same online, we are keen to push it to the forefront
although it is nice to sneak a peep at and get ostomates and healthcare
the inside of colleague’s houses! The professionals discussing it as a matter
return will also mean we will be able of course. We have five Real lives
to quickly turn around requests for stories. I know from feedback just how
RADAR keys and our literature etc. helpful these are to people. Anyone
struggling to get fit after surgery
There are a number of things I would should find Ed Rowland’s experiences
like to draw your attention to in this useful. John Bigland’s and Laura Plant’s
edition. I know from calls and emails stories capture that courageous
received that the issue of centralised spirit we so often see when people
Tidings Magazine:
The views expressed by the contributors are are faced with seemingly endless
not necessarily those of Colostomy UK. Great
care has been taken to ensure accuracy, but
and insurmountable health issues.
Colostomy UK cannot accept responsibility Similar is the case with Sharon Morrin
for errors or omissions. who ended up facing the prospect
Disclaimer: of emergency stoma surgery during
The display, description or demonstration lockdown.
of products and services or the inclusion of
advertisements, inserts and samples within
Tidings Magazine does not constitute an
Finally, Alan Blacklee reflects very
endorsement or recommendation of these honestly on the price he paid for
products and services by Colostomy UK. delaying seeking help. It’s a cautionary
©Copyright 2021 Colostomy UK. All rights
reserved. No part of this publication may be
tale, but one you will be glad to hear
reproduced, stored in a retrieval system, or has a happy ending!
transmitted, in any form or by any means,
electronic, mechanical, photocopying, Best wishes,
recording or otherwise, except as permitted
by the UK Copyright, Designs and Patents
Act 1988, without the prior written
permission of the publisher. All marks
acknowledged.
Design
H2 Creative (Bath) Limited Richard Biddle
www.h2bath.co.uk Editor, Writer & Researcher
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 2021
Would you like more?
More information about the latest
stoma product updates.
More news from Colostomy UK
direct to your inbox.
More opportunities to take part in
surveys and have your say on the
future of stoma care in the UK.
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Get more from Colostomy UK by registering with us. It’s free, and your friends or family
are welcome to join too! Visit www.ColostomyUK.org/join-us/ or call 0118 939 1537.
CONTENTS 5
Contents
Colostomy UK is a national charity that
offers support and advice to people living
with a stoma, their families, carers, and
Colostomy UK News
friends. We’re here if you have questions,
need support or just want to talk to someone
who lives with a stoma.
6 Colostomy UK: News
We also run projects to EMPOWER
ostomates to return to sports, hobbies
16 Colostomy UK: Volunteers
and other interests and give them the
confidence to take up fresh challenges. 30 Active Ostomates
We are advocates for ostomates’ rights
and their voice on the bigger issues. Our
Real Lives
campaigns raise awareness and encourage
organisations to make their facilities more
inclusive. SUPPORTING and enhancing
ostomates’ wellbeing is at the core of
everything we do. 10
The Dangers of Ignoring the
How to contact us Symptoms of Illness – Alan Blacklee
Stoma helpline for: 12
Emergency stoma surgery during
Emotional support, experience-based lockdown – Sharon Morrin
advice and guidance from a volunteer.
0800 328 4257
24 hours a day and completely free.
18
Confidence and the battle to get
active again – Ed Rowland
Adminline for:
Information packs, ID cards, RADAR 38
I still carry a lot of guilt when it
keys, travel certificates and Literature.
0118 939 1537
comes to my illness – John Bigland
If we’re not in, just leave a message.
info@ColostomyUK.org
46
16 years and more than
To request (or cancel) your quarterly
20 surgeries – Laura Plant
copy of Tidings call 0118 939 1537
info@ColostomyUK.org
Editorial Enquiries Wellbeing
Letters, articles or other submissions
Colostomy UK, Enterprise House, 34
Dear Nurse – Mark Johnson
95 London Street Reading,
Berkshire, RG1 4QA
info@ColostomyUK.org
43
Let’s talk about sex – Sue Lennon
Advertising enquiries
For a media pack and advertising rates:
0118 939 1537
Fundraising
Marketing@ColostomyUK.org
20
Colostomy UK: Fundraising
36
Step up for stomas
Social media:
Support
Find us on
Facebook 49
Your letters and emails
Join our ‘private’ support group today
simply put ‘Colostomy UK Support Group’
into your Facebook search bar, click on
‘Group’ and click on ‘Ask to join’ you will Donating to Colostomy UK
be assured of a warm welcome! An annual donation of £25 (or what you can afford) allows us to produce Tidings and to continue our
vital work, supporting, and empowering ostomates – see page 25 for our donation form.
You can also donate via our website www.ColostomyUK.org/donate or by calling us on 0118 939 1537
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 2021
6 NEWS
Libby Herbert
General Manager
Libby.Herbert@ColostomyUK.org
Welcoming
Tom Skilbeck
We are delighted to announce the
appointment of Tom Skilbeck who
As General Manager of Colostomy joins Colostomy UK as our Strategy
UK I am delighted to announce that and Change Trustee.
- after jumping through numerous
hoops - our application to work Originally hailing from the north-east
with the charity Pilotlight has of England, Tom now lives in north
been accepted. Pilotlight, whose London with his wife and dog. Tom is sigmoid colostomy. It was during one
strapline is ‘Great causes deserve a management consultant who helps of many sleepless nights searching for
great talent’, brings businesses organisations to deliver people-related information that Tom found Colostomy
and charities together to support change programmes. He has worked UK and the treasure trove of support and
strategic planning. extensively in the private sector with resources we offer.
clients from all over the world.
The ‘Pilotlighters’ are professionals Tom is thrilled to be joining the
from different sectors, who will be As part of his ongoing battle with a board of trustees. He sees it as a
working with us over a 10-month complex transphincteric horseshoe fantastic opportunity to use his skills
period to help us shape Colostomy fistula, Tom became an ostomate and experience and make a positive
UK’s strategy and develop our people. in September 2019 and has a loop- difference for ostomates everywhere.
Pilotlight works specifically with small
and ambitious organisations like ours,
tackling disadvantage in the UK and
trying to improve the lives of those Have your say on the companies
most in need. Making no charge for
their services, Pilotlight only support that manufacture and deliver
around 75 charities at a time, so I am
thrilled that Colostomy UK has been
stoma products
selected. Working with such talented As part of our commitment to be the voice
people and a fantastic organisation of ostomates, Colostomy UK is investigating
is an amazing opportunity for our the service provided by companies that
charity. Their expertise will help us to manufacture and deliver stoma products.
evolve which, in turn, will help us to
better support ostomates. You can help us by completing a
short survey. Your responses will
Ed Mayo, CEO, Pilotlight said: “At
allow us to build a better picture
the heart of all great charities is a
of stoma care in the UK, which
decision to care. I am delighted to
we can then use to work with the
welcome Colostomy UK as a new
stoma industry and the NHS.
charity partner for Pilotlight, to
support your vital work of care for We want to ensure ostomates get the best
people with a stoma. Good luck for support and services possible! To complete the survey, follow
the work ahead!” this link: https://www.surveymonkey.co.uk/r/5WMVKCW
or turn to page 8 to complete a paper copy of the survey which you
To find out more about Pilotlight
can return by post.
visit: pilotlight.org.uk/
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257
Back to content page NEWS 7
Centralised Everything points to similar services
being introduced in other locations in
prescription
the future. So why is this happening
and how could it affect you?
services
CCGs are introducing centralised
prescription services for four
main reasons:
Traditionally repeat prescriptions 1. To make sure that ostomates
for stoma products have been
issued by your GP (family doctor).
In some areas of England this is
get the right products, in the
right quantity. Legacy Update:
starting to change with Clinical
Commissioning Groups (CCGs)
2. To make sure that ostomates
have a regular review with a Helping ostomates
introducing specialist stoma
products ordering services,
stoma nurse.
3. To improve quality of life.
achieve their GOALs
overseen by stoma nurses. 4. To reduce waste.
In the last edition of Tidings, we
If you live in Nottinghamshire, South Change can be disconcerting, told you about our new eight-week
Tees, Rotherham, Luton, and Harrow but it is important to remember pilot project called ‘Giving Ostomates
for example, your prescriptions have the following: Active Lifestyles (GOAL)’. Everyone
been managed by a centralised taking part in the programme was
prescription service for some time. •
The only real change is that
your prescription will now be looking for support with healthy eating
If you’re in Halton, Knowsley, and exercise following stoma surgery.
Liverpool, St Helens, Warrington, or managed by a prescribing
The Wirral, the new Merseyside & service not your GP. On 15th March, our first six participants
Region Stoma Service will soon take •
The prescribing service will logged on to the first online session with
over managing your prescriptions. contact you to place your Personal Trainer Jo Prance. There was a
These services are generally run by regular order rather than follow-up session a few days later with
an external company. your dispensing company. Sophie Medlin, Consultant Dietitian.
Although each service operates •
How you receive your order It is thanks to the legacy of Isabel and Derek
slightly differently, generally speaking WILL NOT CHANGE. Jonas that we were able to run this pilot. We
you can expect a monthly call to hope the results from it will allow us to do a
•
Specialist nurses from
review your last order and place a full roll-out in the future. As many will know,
prescribing services are all
new one, along with some health it is common for ostomates to struggle
trained stoma care nurses. They
and product-related questions to with their weight after surgery and to lack
are there to complement the
make sure that your needs are being confidence when it comes to exercising.
support you receive from your
met. Your prescription is then placed
hospital team, not replace them. As a self–funding charity, donations such
with the dispensing company of your
choice or your local pharmacy, who will If you have any questions as legacy gifts are vital. Large or small, they
deliver your order. If your monthly call about centralised prescription have an extraordinary impact on the people
identifies any health or product issues services please email we help and support. As well as funding
you will be offered an appointment info@colostomyuk.org or speak projects like this, legacies enable us to:
with a specialist stoma nurse. to your stoma nurse or GP.
• Run our 24-hour Stoma Helpline
• Provide our volunteers with the
training and support they need
• Produce Tidings
Vacancy: Clinical Trustee • Fund campaigns
• Move closer to our vision of a
Are you a healthcare professional actively working with stoma stoma-friendly society
patients and the stoma community?
We are looking for a registered practitioner to join our board of trustees.
You will enhance Colostomy UK’s understanding of the challenges clinicians To find out more about leaving a gift in
face on a day–to–day basis and help us to forge productive relationships your will, see the legacy leaflet enclosed
with the healthcare profession. Your input and guidance will shape our with this Tidings, or visit our website.
services, helping ostomates of today and tomorrow thrive and flourish. For more information about GOAL visit:
colostomyuk.org/active-ostomates/
This is a voluntary position suitable for a senior clinician. Charity experience
goal-giving-ostomates-active-
will be beneficial.
lifestyles.
To enquire please email: info@Colostomyuk.org.
TIDING S 6 2 I SUMM ER 2021
8 SUPPLIES SURVEY
Have your say on the companies that
manufacture and deliver stoma products
As part of our commitment to be the voice of ostomates, Colostomy UK is investigating the service provided by companies that
manufacture and deliver stoma products. You can help us by completing a short survey. Your responses will allow us to build a
better picture of stoma care in the UK, which we can then use to work with the stoma industry and the NHS. We want to ensure
ostomates get the best support and services possible!
Either complete the survey below and post it to us (Colostomy UK, Enterprise House, 95 London St, Reading RG1 4QA)
or follow this link: https://www.surveymonkey.co.uk/r/5WMVKCW
1. Where do you live? o England o Scotland o Northern Ireland o Wales
2. What type of stoma(s) do you have? o Colostomy o Ileostomy o Urostomy o Don’t know
Other (please specify)
D D M M Y Y
3. When did you have your stoma formed? Date
4. Have you ever received any communication (call/mail/email) from a stoma product manufacturer or
dispenser offering you samples that you haven’t requested?
o Yes o No
Comment
5. Have you had your stoma products changed without being consulted?
o Yes o No
Comment
6. Have you had any products added to your prescription that you felt weren’t needed?
o Yes o No
Comment
7. Were you actively involved in choosing the stoma care products that you use?
o Yes o No
Comment
8. Were you offered a choice of dispenser/delivery company?
o Yes o No
Comment
9. Please select all the options that are important to you when choosing your dispensing/delivery company?
o Ease of ordering o Complete delivery of order o Quick delivery of order
o Provision of free complementary products such as wipes or disposal bags o Telephone advice relating to stoma care
o Telephone advice relating to stoma care o Being able to easily sample and trial different products
o Annual product review by a Stoma Care Nurse
o Please expand:
Comment
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10 REAL LIVES Back to content page
The dangers of ignoring the Having established with hard
symptoms
evidence something that everyone
already suspected (indeed I can
almost hear the sighs of our women
readers!) the researchers went on
to ponder many questions. They
of illness
queried for example the extent to
which the reluctance of men to visit
their GP might be a contributing
factor to lower male to female life
expectancy (particularly as men
are more likely to have dangerous
occupations than women). They
BY RICHARD BIDDLE also touched on the implications of
delaying seeking help, and how this
can lead to patients (both male and
female) presenting with a serious
disease at a later (and less treatable)
stage. The latter is of course very
pertinent in the current climate
and is something that Colostomy
UK’s president, Ian Daniels FRCS
has warned about recently in this
magazine. A similar gender disparity
exists with bowel cancer screening,
which is all the more worrying
given that men are at higher risk of
getting bowel cancer than women.
According to Public Health Matters,
which is the official blog of Public
Health England, in 2014 only 53%
of men completed their home tests
Research published compared to 58% of women.
recently in the British
The purpose of this article is not to
Medical Journal examine why all this might be. You
concluded that men will also be relieved to hear that I
am not going to inflict on you an
were less likely to analysis of the researcher’s detailed
consult their GPs findings. But what I do want to do,
is to use the experience of one of
than women. our readers to show, starkly, what
the above can equate to in human
terms. My intention, and that of Alan
Blacklee, who was kind enough to
share his story with me, is twofold:
This finding followed a huge study, to encourage people to seek help
which looked at the consultation early when they are ill, and, if you
rates at 446 GP practices over a are in the age bracket to qualify for
three-year period, taking in almost bowel screening, urge you to do the
four million patients. The crude tests (and to tell your loved ones to
consultation rate was 32% lower do them too!). This message applies
in men, and the gender gap in equally to men and women, but I
consultation rates most pronounced am saying it just a little bit louder to
between the ages of 16 and 60 years.* male readers, for obvious reasons.
* Wang, Y., Hunt, K., et al., ‘Do men consult less than women? An analysis of
routinely collected UK general practice data’, British Medical Journal Open 2013;3.
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257Back to content page REAL LIVES 11
Alan is now 61 years old and lives in November 2014. As his cancer had
Middleton St. George, near Darlington, spread circumferentially around the
with Frances his wife of 38 years. The bowel and rectum, it was necessary
couple have two grown-up sons and to remove part of his bowel, along
two grandchildren. Alan served 32 with his anus, sphincter, and coccyx.
years as a firefighter with Cleveland Fire He also had a permanent colostomy
Brigade before retiring from the service formed. Mr Gunning told Alan
in 2010. He then retrained and worked afterwards that he was extremely
as a Class One HGV driver until March lucky that the cancer had not burst
this year, when he “retired for good”. out of the bowel, saying that this was
Alan is now free to enjoy the things imminent. Alan was in hospital for
he loves, which include motorcycling, 11 days before spending a long and
walking, the great outdoors, as well painful recovery period, made all the
as cooking and photography. I get more frustrating due to tailbone pain
the impression from speaking to and stitches which made it difficult
Alan that the motorcycle trumps for him to sit.
everything else. As he has been keen
to tell me: “Call anytime, I’ll always Thankfully, Alan has been cancer free
answer, unless I’m out on the bike.” since his surgery and has adapted
well to life with a stoma. As you will
When I asked Alan to tell me his have picked up, he is ‘back on the
story, he began by referring to bike’ and when we last spoke, he
himself as “a fool”. Taken aback was counting down the days until
by this (it’s not usually someone’s he could go out for a pint with his
opening gambit when I interview mates. But reaching this point has
them) I asked him to explain what taken time. Initially he struggled
he meant. It quickly became clear: with his body image, and the
nerve damage he sustained during
Looking back Alan still can’t believe
“I was a typical bloke. I had surgery will always be there. He has
what he did next… nothing. He also never managed to regain his
symptoms for a long time
rationalised what had happened as fitness, although he sees this as
and found every excuse in a burst haemorrhoid. Alan gets quite work in progress. Alan readily admits
the world not to attend the passionate when he talks about this he was lucky, in the sense that he
doctors, until it was too late.” incident. He is very clear: “I was an idiot. is still alive. Being generally of a
I knew something was seriously wrong, positive disposition, he has moved
Alan’s first symptoms appeared in 2010, but instead of doing what I should have on. He has also learned to live with
just after he retired from the fire service. done, I accepted my fate. I also hid the consequences of his inaction,
These took the form of a strange what was going on from my wife.” But, although he still wonders what might
sensation in the area of his anus and by now, time was running out. Over have been if he had acted on his
occasional diarrhoea. Alan says these the course of the next few days Alan symptoms back in 2010. This was
symptoms got significantly worse over started to lose control of his bowels. really driven home to him recently,
time with the appearance of blood His hand forced, he finally booked to when an ex-colleague from the fire
when he went to the toilet. Rather see his GP. His doctor acted promptly. service was diagnosed early with
than getting things checked out by his On hearing how long Alan had been bowel cancer and had this removed
doctor, he passed the bleeding off as experiencing symptoms she rang the by keyhole surgery and without the
possible haemorrhoids. Alan lived with hospital immediately and Alan was need for a stoma. Alan’s advice to
this state of affairs for almost four years booked in for a colonoscopy the day readers is simple:
until one summer day in 2014, when he after. Mr Gunning, the consultant who
got the sudden urge to open his bowels. went on to operate on Alan, performed “If you take nothing else
He explains that he was incredibly lucky this. He found three abnormal growths from my story, take my
to get to the toilet in time and then, in Alan’s bowel, which were later
when he got up from the toilet, was advice to seek medical help
confirmed as cancerous.
shocked to see the bowl bright red with as soon as you have ANY
blood. He says that there was a massive After a short course of radiotherapy unusual symptoms.”
amount of blood. Alan went down for surgery in
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202112 REAL LIVES Back to content page
Emergency
stoma
surgery
during
lockdown
BY SHARON MORRIN
When you are only 46
years old, you don’t
immediately associate
a change in your bowel
habits with cancer.
Perhaps that’s why when I first started to
get symptoms, I didn’t pursue the matter
quite as I should have done. That’s the
benefit of hindsight for you, and it didn’t
help me last spring, when things came to a
head. I’ll never forget the 24 March 2020. As
I set off for work that morning the stomach
pains started. Putting this down to trapped
wind, I persevered, but the pain got steadily
worse. On the way back from picking up my
son Marty from his Dad’s I got some extra
strong mints, having heard these were good
at getting ‘things’ going. That evening I ate
the whole packet. After a restless night
I woke up in agony and my partner Russ
called 111, who said to go to A&E.
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257Back to content page REAL LIVES 13
By the time we arrived, I was meant Russ had to go home,
doubled over in pain. The doctors leaving me scared and alone. The
thought it was my appendix, but tests included a CT scan, as they
then the questions turned to bowel thought it could be inflammation
movements. of the bowel or appendicitis. This
revealed a mass in my sigmoid colon.
I explained they had started to change, The doctors said they couldn’t be
from loose to constipated, sometimes sure if it was cancerous, but they
with blood showing. In fact, this had needed to operate. Two days after
been going on for some time. I’d just being admitted I had an emergency
got used to it. The blood started in Hartmann’s procedure and end
2017 and I got this checked by my colostomy formed. While I waited,
GP. It was a bit embarrassing: without I was in contact with Russ and
the promise of a meal or a night out, managed to speak to Marty and my
he performed a rectal examination. mum, but no visitors were allowed.
He said it could be internal piles and It was very difficult. I didn’t even
told me to record if and when blood know what a stoma was and didn’t
showed again. For the next three years have a chance to process what was
I saw blood occasionally but put it happening. There wasn’t even time
down to internal piles. It was easier to site my stoma.
this way. But as I’ve come to realise,
the path of least resistance isn’t always I came round with people the consultant told me I was lucky to
the best… The pain side of things at my bedside. My surgeon be alive, as apparently the tumour
came later. The first episode was in was about to burst. Hearing this gave
December 2018 when me and Russ
delivered the bad news: the me goosebumps. Arrangements were
were at a concert for his 50th birthday. mass was cancerous, and made for me to have a colonoscopy
It came on just before the gig started, a lesion had been found through the stoma to check my bowel
lasted two hours, and then was gone. on my liver. was ok and an MRI scan on my liver.
Further episodes followed, but I didn’t The thought of the former freaked me
pay them much attention. Why would This came as a huge shock. I had out. My stress levels on the day weren’t
I? The pain didn’t last long. lost my dad 16 months earlier to helped by all the waiting between
oesophageal cancer. My goal now was patients due to the heightened care
It was early 2020, when I noticed more to recover from this operation and being taken with Covid-19. The
changes and saw more blood. I knew get used to living life with a stoma. procedure wasn’t as bad as I expected.
I should have gone to the doctors, but I found everything overwhelming The worst part was the Moviprep I had
like many GP practices, you can only at first. After five nights in hospital, I to take the night before, leading to
call ours for appointments at 8:00 am. went home. Recovery was hard. It was regular toilet trips to empty my bag!
As this is when I leave for work, it’s a three weeks before I could straighten
bit awkward. Sometimes you have to up and sleeping was difficult. Russ was The MRI scan confirmed four lesions
wait 20 minutes to get through, plus a huge support, helping me shower, across the liver, one of which was
I didn’t feel comfortable having to say changing my stoma bags, etc. It close to where the blood vessels
anything to my work colleagues, so wasn’t plain sailing; there were a few enter and another that was too big
I left it. Our lives are ruled by time. accidents, and I don’t think the sofa for surgery. This meant four rounds
Scarcely did I know how little of it I will ever be the same again. But we of chemotherapy in late May. I found
might have had left. If I’m honest, just laughed it off; it was all part this difficult to cope with. It played
by this point cancer had crossed my of getting used to this new way of life. havoc with my calves and I suffered
mind. I’d recently seen stuff on social painful constipation which lasted up
media about it. But I didn’t have any On the 14 April 2020, I was well to four days each time. Stool finally
of the other symptoms, such as losing enough to celebrate my 47th birthday. passing through the stoma was like
weight. If anything, I was putting it Stuck in lockdown it was a quiet day having contractions, but I felt such
on. This helped me to rationalise my spent with Russ and Marty. That relief afterwards. Post-chemo CT
decision not to call. evening the Indian takeaway we had, and MRI scans showed the tumours
washed down with a couple of glasses had shrunk enough for surgery. I was
Back at A&E, an X-ray showed of wine, prepared me for my follow-up given notification of my pre-surgery
a shadow in my abdomen. I was appointment at the hospital. It was appointment on the same day as I
admitted for more tests. Coronavirus here my diagnosis was confirmed and received news that Marty’s father had
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202114 REAL LIVES Back to content page
died unexpectedly. My emotions were this; from clothes not fitting anymore
all over the place, having to tell my son because of my stoma to not being able
the awful news while trying to prepare to be with the people I love. But I have
for major surgery. I was more nervous remained positive. Russ has been my
this time round as I had the time rock, as well as my carer, nurse and
to think about things. Fears of not housemaid! Thanks to him I have kept
coming out of surgery swept over me. going. He has cheekily named my stoma
I was scared about leaving my child an “Kuato” from the film Total Recall and
orphan. In the end, they removed 60% bestowed on me the DJ name “Atoms”
of my liver, along with my gallbladder. a stoma anagram, for when we can start
Originally it was meant to be 40%, but DJing again. The professionalism of
chemo can change the way the liver NHS staff and the support of friends,
looks, so it was decided to remove family and work colleagues has been
everything that looked suspicious. vital too, as has the help I have received
I stayed in for seven days, again with from Colostomy UK and Bowel
no visitors. Cancer UK.
Shortly before Christmas I had follow- my neck and rectum. I am now due I hope my story will help
up bloods and another CT scan. In to have a fine needle aspiration of others who are going through
January 2021 my oncologist informed the neck (biopsy). It has been an a similar journey. I hope, too,
me all the cancer markers were low, emotional 12 months, compounded that my experience is a salutary
and my lungs, liver and bowel were by coronavirus visiting restrictions
clear, but due to an enlarged para- in hospitals, which left me scared
reminder to everyone not to
aortic lymph node in my aorta, I had and alone at some of my darkest delay acting on the symptoms of
to have a PET CT scan. This showed moments. I’ve shed many tears from illness. As I have learned, you are
small, highlighted lymph nodes in the frustration of going through never too young to get cancer.
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raffle tickets please get in touch by calling 0118 939 1537 or email info@Colostomyuk.org.
Every ticket purchased helps us to support and empower ostomates.
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FREEPHONE S TOMA HEL PL I NE: 0 8 0 004/05/2021 17:57
3 28 4257REAL LIVES 15
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WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202116 NEWS
Emma Howell
Volunteers Manager
Volunteer @ColostomyUK.org
I know from speaking to our
volunteers just what a worry
tackling the ‘firsts’ can be after
having stoma surgery – be that
the first meal out, the first time
going to the shops, or the first time
using a public toilet. For many new
ostomates these opportunities
have been delayed by lockdown
or shielding over the last year,
and therefore their worries have
amplified. With this in mind I asked
the team what advice and tips
they would give new ostomates.
Hopefully, even our more stoma-
experienced readers will pick up a
nugget or two from what follows…
The overarching message from our
volunteers was ‘be prepared and
remember no one will know that you
have a stoma – unless you tell them’.
Many of our volunteers have their
own pre-packed travel or emergency
bags, which they take with them
whenever they go out, whether it
be to the shops, the cinema or even
round a friend’s house. The one
pictured opposite is used by Helpline
volunteer Sue. It contains from the
top, clockwise: non-descriptive bag to
it goes onto the pad, rather than my their ID card and RADAR key. Finding
carry everything, stoma bags, safety
clothes. I promise you, this tip has accessible toilets is a topic that most
item (a folded puppy training pad for
helped a lot of ostomates feel safe of our team mentioned. You can use
extra protection against leaks), dry
and more confident.” ‘Toilet Map’, ‘AccessAble’s Accessibility
wipes, bottled water, adhesive remover
Guide’, or ‘Changing Places Toilets
(spray or packet), hand sanitizer, over- Other volunteers, such as Chris, also
Searchable map’ to find toilets near
the-counter output thickeners*, air include a peg in their bags, which they
you. Bernard said: “don’t be afraid to
freshener and black disposable bags. find useful for holding upper clothes
use the accessible toilets and if you
out of the way when they are changing
Sue said: “I always have Puppy Training get funny looks from people just out-
their bag. Donna also takes a roll of
pads (Amazon £13 for 50), smaller, stare them or ask them if there’s
microporous tape. In her experience it
neater and thinner than hospital bed a problem – in my experience it
can repair, temporarily, most problems!
pads. I fold these up and tuck them usually works very swiftly! People
between my pants and ensure it covers As well as a travel/emergency bag, need to remember that not all
my stoma bag, so that if the bag leaks, many of our volunteers also take disabilities are visible.”
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257Back to content page NEWS 17
Recycle 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 near you.
Book your collection by calling 0344 879 4417 or book online
at icollectclothes.co.uk/donate/colostomy-uk
Icollect Clothes - Recycle and Reuse HP- v2.indd 1 29/04/2021 07:47
Here are some other tips/ advice from the team:
• M
ake sure your bag is secure • S tay local at first so that you
and empty before you go out. know the area and where toilets
are in case of need.
• W
hen you first venture out,
have a purpose, like getting a • I f eating out, avoid anything
newspaper and chose a time too rich or spicy.
when you think your stoma is
• Try to remember that no-one
less likely to be active.
knows you have a stoma. Try
• D
on’t feel pressured (either by to be confident!
yourself or others) to make that And finally, as a number of our
first trip out. Take it when you volunteers said:
feel ready.
• T
hink positive. You can do this! ✓
• D
on’t be afraid to use If in doubt, phone the Stoma
accessible toilets. Helpline (0800 328 4257) and ✗
• G
o for a short walk to start with. speak to a volunteer who has
Then as your confidence grows, been there, done it and got the
get more adventurous! stoma bag!!
• I f possible, go out with a family Take care, Emma
member or friend, so you feel * Before trying output thickeners,
supported. speak to your stoma care nurse, as
excessive use can cause blockages.
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202118 REAL LIVES Back to content page
ED ROWLAND WITH
RICHARD BIDDLE
Confidence If you’ve followed the
and the battle
exploits of our Rugby
League team, then
to get active you will know that its
impact has extended
again
Ed Rowland, with Richard Biddle
far beyond the pitch.
Media coverage of fixtures has brought
stomas and the needs of ostomates to a
wider audience and, at the same time,
raised awareness of Colostomy UK and the
work our charity does in supporting and
empowering ostomates.
But it’s also about the difference it makes at an
individual level. It’s about the effect it has on
somebody when they don the purple kit, tie
their boot laces, and make their first tackle.
It’s about people like Ed Rowland.
Ed, who is 38 and a police custody sergeant,
is married to Kate who is also a police officer.
The couple have two children, Maggie who is
now five and Grace who is one. Ed had stoma
surgery in October 2016 after a ten-year battle
with ulcerative colitis (UC). He was diagnosed
following a foreign vacation, when he came
back with what he thought was a post-holiday
‘tummy’. However, rather than improving, it got
worse. At the time he was a frontline police
officer. For a man in his early twenties, this
was his first encounter with serious illness. His
weight dropped dramatically, and he became
increasingly concerned about what was going
on. In the end, Ed was admitted to hospital and
diagnosed. Over the next decade, he found
himself in and out of hospital with flare-ups.
He was also on and off steroids, while all the
time battling to stay well enough to continue
doing the work he loved. Ed says that the stoma
option was broached with him, but he always
shut these conversations down quickly. As he
said: ‘I wasn’t prepared to even consider it’.
Ed’s views changed when UC nearly caused
him to miss the birth of Maggie. This was the
moment when he realised that he couldn’t
continue as he was. During his next flare-up Ed
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 328 4257Back to content page REAL LIVES 19
was told he was out of options and so I had a sneaky look at the variety of ball, I thought I could still move like a
the next day had surgery. Post-op he support wear, bands and protection teenager, and tried a side step past
was determined to get his fitness back. plates on show. I was wearing my work an opposing player, which I did, only
Ed talks in terms of his stoma giving him ostomy guard but debated whether to to realise the ball had been snatched
a new lease of life. He began to put on wear it. I decided I would as it would give out of my hands. But the whistle blew.
weight and, as he puts it: ‘feel normal me a bit more confidence in taking a hit. I received the ball again, and took it
again’. For the first time in many years Ed It then dawned on me…I wouldn’t be into the tackle, holding it tight this
was able to do what he wanted without able to wear my glasses. I wear them all time. I took the hit and went to the
the fear and anxiety that UC had cursed the time and things are blurry without ground with the ball nestled into
him with. That’s not to say of course, them. I took them off and made my way my right armpit.
that he didn’t have to adjust to life with out squinting and worrying that I would
As I hit the ground, I felt a crack and a
a stoma and all that brings. find it difficult to see the ball, let alone
pop as the wind was knocked out of me.
catch it when it was passed to me!
Ed’s road to fitness started with the It was lucky I couldn’t talk as there were
gym. He took things gradually, a bunch of expletives in my head as I
welcoming the fact that for the first Take your time. Small stood up. I heard my teammates yelling,
time in years, he didn’t need to keep but I couldn’t breathe let alone ‘play the
dashing off to the toilet. He then progressions make a ball’. I saw the ball on the ground and
progressed from the gym to running. massive difference in the used my foot to roll it behind me as I
All the while his confidence was slowly long term. Start light and had seen on TV. I then bent over with
returning. This brings us to early 2019 build yourself up steadily. my hands on my knees to catch my
when Ed read about the Colostomy UK breath while the game continued.
Rugby League team and decided he was
I felt the adrenaline rushing and the
ready for such an opportunity. Ed made
pain subsiding. I was hooked. I loved
his debut that summer against the
being part of this team, despite feeling
Political Animals. This is what he said
I wasn’t any good! But it didn’t matter.
about the experience:
I took the ball into another tackle to
“I was nervous about leaving home be held up by two players who gave
and traveling to Leeds. I had recently me a pat on the back, one of whom
moved to the north east with my said ‘good lad’, in a distinctive northern
family and transferred jobs. This was accent. I made a good couple of tackles,
a massive change in my life, and now took a few good hits, passed the odd
I had volunteered to pull on the Team decent ball, missed a couple of tackles,
Colostomy UK rugby league shirt! I had and loved every second of it.
never played league before, and grew
Afterwards, it was great to share a pint
up going to a union school… but that
with both teams, talk about the game,
was 20 odd years ago, and since then I
and watch the rugby on the bar TV. I left
had grown older, bigger, with more life
for home with a boost of confidence, a
experience, and there was the matter
new network of friends and, of course,
of having a stoma…
a few battle scars to be proud of!”
I was confident in taking hits and rolling
Just then I was spun a ball from a Regaining your fitness after stoma
around on the floor from work but saw
blurry faced player in purple. I caught surgery can be a real challenge. And, of
rugby as a real test. I purchased a pair of
it and my eyes adjusted a little. We course, fitness means different things to
cheap boots, packed a bag of kit, made
then proceeded to warm up with a few different people. Not everyone aspires
sure I had the armour I wear for work,
up-and-under kicks. The first of these, to playing a contact sport like rugby.
and set off first thing. I had no idea
I nailed a catch, pulling the ball into For some it’s about getting out and
where I was going, so was completely
my torso and dropping down to my walking or doing the garden. However,
reliant on the sat nav. After a few wrong
knee. My confidence rocketed and I was Ed’s advice on the matter applies to
turns, (which with UC would have set
suddenly that 15-year-old schoolboy all: “Take your time. Small progressions
off a need for the toilet) I arrived at
back on the rugby pitch. I was told I make a massive difference in the long
the ground and was met by a smiley
would be playing as second row. I was term. Start light and build yourself up
Giovanni and Libby who introduced me
comfortable with this as I had played steadily. Wear hernia support. Enjoy the
to team members as they arrived.
hooker at school, and being a forward, progression and with it the boost to
I then went to the changing room. I wouldn’t need to worry much about confidence that follows. Above all, as
It was the first time I’d actually got lines and formations, or so I thought. difficult as it may be, try and see your
‘changed’ in front a group of people with I soon realised rugby league is very bag as a trophy of a previous illness or
my bag. I had been on holiday and let it different to union. The whistle blew battle, not a representation of defeat.”
all hang out, but this seemed different. to start. The first time I received the
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202120 FUNDRAISING
Giovanni Cinque
Fundraising and Development Manager
Giovanni.Cinque@ColostomyUK.org
Supporting Colostomy UK
We are a self-funding charity and rely on donations and grants to fund
all our activities. Every £1 that you donate really helps.
There are loads of ways you can support us. Please visit
https://www.colostomyuk.org/get-involved/fundraising/ for more details.
Despite the challenges we’ve all faced over the last twelve months we’re both
proud and humbled that people have continued to find ways to support us.
Unfortunately, we don’t have the space to acknowledge everyone, but are
delighted to feature some of our fundraising heroes in this issue.
Make a
Carmen can difference with
The fabulous Carmen Carmichael
is taking on the virtual Land’s End to
Amazon Smile
John O’Groats challenge - completing
874 miles this year – to support
and Facebook
Colostomy UK, and if that’s not
Do you shop on Amazon?
enough she’s also fundraising through
You can raise free donations
charity auctions and has raised £660
for Colostomy UK when you
already! We wish Carmen the best of
shop with AmazonSmile!
luck with her awesome challenge!
Every £1 raised helps us to
better support ostomates.
AmazonSmile customers can
Karen’s
10k
support Colostomy UK in the Amazon
shopping app. Just open the app, go
to the main menu and tap ‘Settings’.
Choose ‘AmazonSmile’ and follow
the on-screen instructions. Thank
you and happy shopping!
Despite the Weymouth 10K being Another easy and straightforward
cancelled Karen McGuinness way to support is by setting up
still managed to don her Team a Facebook fundraiser on your
Colostomy UK running vest and birthday. You can encourage your
complete 10,000 kilometres on friends, family and followers to
her own. She also raised a brilliant donate too. For more details visit
£200 as well. Thank you, Karen. facebook.com/fund/colostomyuk
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257Back to content page FUNDRAISING 21
100 miles
in May
for Colostomy UK
A team from Pentagon Corporate
Fleet spent May challenging
themselves to cycle, walk or run 100
miles over the course of the month
to raise money for Colostomy UK!
We’re really grateful to Hannah, Sarah, decision to have an irreversible Freya’s father is likely to need a
Chad, Nat, Freya, Janine, Jon, Anne, ileostomy which was carried out on colostomy too, due to Crohn’s
Debbie, Ian, Richard, and Tamara for the 8th February this year. We believe Disease. At the moment it affects
choosing to both raise funds and this is genetic, as 15 years ago my his day-to-day life and limits things
awareness for our charity. grandfather, Terry, (her father) had they can do as a family. Freya
bowel cancer, also resulting in an mentioned they no longer go on
Hannah explains why they chose to irreversible ileostomy. It is possible family bike rides or camping and
support us. “Colostomy UK is a charity I will also require the support of the have to plan meticulously when
very close to my heart as both my charity in the future as there is a they do go out anywhere.
mother and grandfather have stomas. 50/50 chance I also carry the
“It truly is a hidden part of life which
In February 2020 my mother, Jeanette, gene... my journey to find that
needs to be ‘out there’ more, and I
was invited for routine screening, out has just started!
hope by doing this May challenge
initially a sigmoidoscopy and then a Both my mother and grandfather we can make an impact!”
colonoscopy. A high number of polyps are doing well. I am so proud of them,
You can still support the team and
were found (not all could be removed) but I really believe that this is a
Colostomy UK by donating through
and she was then referred for genetic subject that needs to be spoken
their Just Giving page:
counselling and subsequent testing. about more. People have to be more
https://www.justgiving.com/
After three long months of waiting, comfortable talking about it. The
fundraising/colostomyuk100miles
she was informed that she carries the work that Colostomy UK does in
AFAP gene, thus increasing her risk of supporting ostomates and their
bowel cancer. She took the difficult families is so important.”
Picture perfect
Talented artist, ostomate, and supporter of Colostomy UK,
Emily Hackworthy has created a beautiful and striking set
of ‘outline body’ prints representing ostomates.
Her artwork of male and female forms with either a colostomy
or ileostomy are now available for sale via our online shop, and
Emily is kindly donating all the proceeds to Colostomy UK.
You can order online at: https://colostomyuk.bigcartel.com/
Please allow 28 days for delivery. Purchase is for print only.
Frame not included. Print size A4.
WWW.CO LOSTO MY U K . O RG TIDING S 6 2 I SUMMER 202122 FUNDRAISING Back to content page
Something fishy?
A huge thank you to Martin and Lee from Yateley
West Fishery fishing club who have chosen
Colostomy UK as the beneficiary of their annual
charity weekend this August.
They’re hoping to raise as much as possible through
a combination of donations, tournament entry fees,
In the bag!
and a raffle over the weekend of 6th to 8th of August.
If you’d like to support their big weekend, you can also
visit their Just Giving page at https://www.justgiving.
If you’re planning a clear-out, you can donate com/fundraising/martin-gardener2 with donations
your unwanted clothes, paired shoes, linen, going to Colostomy UK.
bedding, towels and curtains to ICollectClothes,
and at the same time generate much needed
funds for Colostomy UK!
They can also collect accessories (bags, belts, hats,
scarves), books, DVDs, CDs, soft toys, electronics
and small domestic appliances.
If you live in Greater London, the West Midlands
or Merseyside you can book a collection online at
icollectclothes.co.uk/donate/colostomy-uk or
by calling 0344 879 4417. POSTAGE STAMPS
WANTED
For all other areas give them a call and they will be
able to advise when they will be collecting near you.
Legacy
Quarterx1 01v00r00 Stamps | Date of Publication: June 2021 | Copyright ©2021 Colostomy UK | Registered charity no. 1113471
Stamps to be cut/torn
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l from recent mail.
p. Help us support
• British and foreign
37 the ostomates of Your copy of Tidings
w
.org today and tomorro includes a copy of our stamps – no need
legacy booklet. If once you to separate.
g you
o
have taken care of your • No more than 1cm of envelope
porting
Supp
p of
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ever
the way
friends and family, you left around each stamp.
would like to leave a gift in
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red
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your will to Colostomy UK, that perforations are damaged.
we would be delighted to
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receive your support.
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Find out m
You can now
Colostomy UK Stamp Appeal
For more details please see donate your
used and 10 Chestnut Avenue
the booklet or email us at unwanted North Walsham
info@colostomyuk.org stamps to Norfolk
Colostomy UK, NR28 9XH
send to:
ving
Will you consider lea Will?
ostom y UK a gift in your
Col
27/07/2020 14:35
FREEPHONE S TOMA HEL PL I NE: 0 8 0 0 3 28 4257You can also read
