e
m
&
D
IB
Stories of courage,
hope and inspiration
children with crohns and colitis
Contents
2
6
10
Beccie
Jonathan
Our first story
My goals are different but no less challenging or satisfying
Richard
My life of tests, more tests and jelly
Laura
Not a happy Christmas
12
Rebecca
18
Anna
Light at the end of the tunnel
Ellesse
Planning my life around a toilet!
16
23
Louise
28
Fiona
26
How it all began
There are benefits to having Crohn’s
Don’t despair, don’t give up
34
Claire
Once upon a time
41
Sophie
Make the best of your Crohn’s
49
Luke
On an elemental diet but thinking of fish and chips
55
Rachel
On Infliximab, I have the energy of a 6 year old
36
44
52
Sarah
Jack
Zainab
Despite having Crohn’s, I raised over £6,000 for research
A roller coaster ride
A slippery slope
58
Charlotte
My feed pump was attached to a back–pack
66
Charlotte
I was determined to smile, it was my birthday
61
70
Molly
Dionne
Queen of the Blood Tests
I’ve got Crohn’s – I’ve not got anorexia
© CICRA 2008
All rights reserved. No part of this publication may be reproduced or in any form or by any means,
electronic or mechanical, including photocopying, or recording in any information storage or
retrieval system without permission in writing from CICRA.
Foreword
For over 30 years the Crohn’s in Childhood Research Association has been
helping and supporting children with Inflammatory Bowel Disease (Crohn’s
Disease and Ulcerative Colitis).
A few years ago one of the children asked whether it would help other
children if she wrote about her experiences of living with Crohn’s disease.
This was readily agreed and her story was printed in the CICRA newsletter.
Since that first article we have regularly featured the youngsters’ stories
exactly in their own words. Realising that they are not alone and being able to
write down their feeling has been a great help to many in coming to terms with
their very debilitating condition.
The idea for this book of stories came from the youngsters themselves
who wanted to raise funds for research. Although we are not making a charge
for this booklet we do hope that you may wish to give a donation.
Thank you
Crohn’s in Childhood Research Association
Parkgate House
356 West Barnes Lane
Motspur Park
Surrey KT3 6NB
Telephone 020 8949 6209
Email support@cicra.org
www.cicra.org
Registered Charity No. 278212
1
Beccie _ our
first story
Beccie
Hi! If you are reading this, it is
probably because you have been
diagnosed with Crohn’s. If you are
like me it will mean nothing, apart
from pains in the stomach and joints,
going to the toilet a lot of times and
feeling really tired and miserable.
Crohn’s is when your small and
large intestines get very sore and get
ulcers, which make it very difficult to
eat and digest any food. When you go
to the toilet there is sometimes blood
2
in your stools. I thought this was very
frightening.
The doctors’ put me on a diet of
drinks in cartons (Fortisip and Enlive)
they gave me a selection of flavours,
but I couldn’t drink them and was
losing weight.
I went into hospital for the
doctors to keep a closer watch over
me. My mum was allowed to stay
with me. The doctors said I would
have to have a nasal tube put in so
that my gullet could have a rest from
having to have food passed down it
and my stomach could have a rest
from having to break it down. I got
really frightened when doctors were
telling me what was going to happen.
There is a special doctor that
explains about the length of the tube
and where and how it is going to be
passed down your nose into your
stomach. They also explain about the
machine that would feed me. I know
that sounds scary, but it doesn’t hurt
and when you have had it in for a
couple of days, you really do forget
about it being there. My lovely
dietician lady worked out how much
food I would need each day to get
me better.
At first I had all my tins of food
while I slept, but I had to get up so
many times during the night to go to
the toilet that I got really tired. My
clever doctor and I decided that I
should have it slowly during the day,
so I could go to the toilet without
losing sleep.
After having the tube in for a
week, I was setting the machine for
feeding and giving myself my own
medicines down the tube. My mum
always watched to make sure I was
doing everything correctly though.
I lost a lot of weight before I
started my six weeks of tube feeding.
I felt tired and sleepy but after just a
couple of weeks of feeding by my
tube my joints started to ache less
and when I wasn’t attached to the
feeding machine I even went out to
friends houses. At first I was very
embarrassed what people would say
about the tube, but friends are really
kind and only want to know how it
feels and does it hurt?
When I was getting to the end of
my six weeks feeding, I could start to
eat things like jelly and have ice-pops.
At first it was strange to use my
mouth to eat as well as having the
tube there.
After the first couple of weeks I
was feeling very much better and
even though I was home I could do all
3
gone away. When I went for my checkmy schoolwork, and I got some good
up my doctor and dieticians kept
marks. My teachers were really
saying I was looking great but I could
helpful and encouraged me to do as
have a relapse. I just didn’t think that
much work as I felt I was able to do.
was possible! I thought the Crohn’s
I went to see the doctor and my
had gone forever.
dietician a week before my tube was
About 3 weeks
due out. The doctors
later
I got a pain
said I had come
The horrible old
under my right foot,
along really well and
but I was still feeling
had put lots of weight
Crohn’s had
good. Then the
back on. My energy
gone away.
tiredness started to
level was really high
come back, lack of
and I was raring to
energy, getting annoyed with things
go. My doctors said if I was feeling
very easily. Lost my appetite and was
fine about it, I could take my nasal
feeling sick. I went to the toilet and
tube out myself at the end of the six
there was blood back in my stools.
weeks, if I wanted to.
I couldn’t believe it, how could it have
The day came for the tube to
come back, it just wasn’t fair!
come out; I was very nervous but
My dad phoned my doctor and
excited at the same time to get away
he said I had to go back on my
from the tube and machine. My dad
steroids and other medication. This
sat with me while I pulled it out, (my
time we had seen the signs much
mum said she couldn’t watch). I don’t
sooner and we knew what to expect.
know why there was nothing to it. My
We did catch it quicker this time
dad washed the tube out and I have
and I’ve had another course of
kept it in a bag, to show my friends
steroids. This time I haven’t had to
what it looked like.
have time off school and I’m doing
From then on I had a great
more dancing than ever before.
appetite and lots and lots of energy,
My mum watches what I eat and
I was back to my old self. Sleepovers
I’m finding that if I eat a healthy diet
with friends, PE, ballet, dancing and
Monday to Friday, I can enjoy going
eating anything (or almost) that I
out and having sleepovers without my
wanted. The horrible old Crohn’s had
4
mum worrying about what I’m eating.
I don’t drink coke and fizzy drinks but
I do drink lots of water.
I have sprite and 7-Up as a treat
if I’m going out. I only have crisps,
sweets and chocolate at weekends
but I have ice-lollies as a treat nearly
every day. Sometimes I get really
annoyed about not having what I
want, but then I think it’s better not
to have too many chocolates and
keep Crohn’s away for as long as I
can. Not eating these things helps
me, they may not help everyone.
The doctors, nurses and
dieticians are really lovely and kind
people. If you want to know anything
just ask. They really will tell you the
truth and not treat you like a baby
who doesn’t understand what
Crohn’s is.
Talking about it to someone who
cares like your parents or guardian
really does help, because you can
ask them questions and you may be
able to answer some of their
questions about things too. We all
have to learn about Crohn’s together.
I hope my story has helped you
to understand Crohn’s a little bit
more.
Update: I am 17½ now and despite
still having Crohn’s I lead a very
active life. Up until last year I had
continued to dance and go on tour
with my dance troop. Because of
exam work I decided to stop dance
but felt that I still needed exercise,
so I joined a gym. Here I do regular
fitness classes and pace myself if
my Crohn’s is active. My Crohn’s
usually flares up when I get anxious
like during the run up to exams or
when I took my driving test – passed
thank goodness! With the help of
Prednisolone I manage not to miss
many school days and hope next
year to continue onto university.
5
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r
a
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a
o
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My
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t
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b
t
n
differe ging or
n
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l
a
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c
s
s
le
satisfying
Jonathan
My name is Jonathan. I am 16 years
old and I have Crohn’s disease but
before I tell you any more about that,
I’d like to tell you a bit about myself.
I live with my mum, my elder sister,
when she is not away at university,
and our two Bengal cats. We are a
very close-knit family.
I live with my mum, my elder
sister, when she is not away at
university, and our two Bengal cats.
We are a very close-knit family.
As a kid I was always on the go.
I loved to ride my bike; I had
swimming lessons; I played rugby,
badminton and lacrosse; I learnt the
piano and I played chess. I also
represented my school at athletics.
6
When I was 11 I was overjoyed
to obtain an academic and means
tested scholarship to Bancroft’s, a
high-performing independent school.
In my first year there I
discovered an interest in classics.
And I was able to indulge my
passion for science through the
Buxton Society, and the Junior
Science Club.
Half way through my first year of
secondary school I started to become
seriously ill. I remember getting
terrible nausea and stomach pains.
According to my medical records I
was suffering abdominal pains and
nausea as far back as 2001. I had to
defer sitting my 11+ exam in 2002.
In early 2003 I was referred to a
paediatrician as I had become
increasingly unwell and was missing
school.
I was misdiagnosed with faecal
retention, and prescribed with a
foul-tasting medicine; it seems that
I am not a typical Crohn’s sufferer,
as I tend to get constipation and not
diarrhoea. I became a couch potato!
I would get a fever, and begin to
sweat and retch. I am glad now that
my mum insisted my GP refer me to
a paediatric gastroenterologist.
I was seen at Great Ormond
Street Hospital, where I was lucky to
get a friendly and understanding
consultant. I was booked to have a
colonoscopy and endoscopy a few
weeks later. My consultant
discovered acute inflammation and
ulceration in part of my bowel. A few
days of planned investigations
turned into ten days as an inpatient.
I was given five days of intravenous
medication, which I still take in pill
form. I was also prescribed a liquid
food diet, so that digestion was
made easy for my gut. But because
the consultant suspected that I
might have a dairy intolerance, he
prescribed a dairy-free alternative.
This tasted foul, and I couldn’t drink
the amount I was supposed to.
I was seriously underweight at
only 35 kilos – the normal weight for
a boy 3 years younger than I was –
and eventually I had to have a nasogastric tube inserted through my
nose, and oesophagus, into my
stomach. I found this procedure
incredibly uncomfortable. The tube
remained in place when I was
discharged and I continued solely on
the elemental feed for 6 weeks, with
my mum changing the tube every 4
weeks. I was also taking Pentasa
and Azathioprine. By the end of July
7
my school year were only eleven or
I was allowed to re-introduce other
12 years old at the time. What
foods one at a time, whilst
became increasingly clear to me is
continuing to get most of my calories
how different people react to things
from the liquid food.
in different ways. Some people jump
As a Crohn’s patient one thing
to conclusions, like one of my
I’ve had to get used to is all the
friends, who said he
tests, which doctors
thought I had been in
rely upon to know
hospital with cancer.
what’s going on in
Another boy was
Another boy was
my body. I’ve had
curious about the
curious about the
three sets of
tube stuck to my
tube stuck to my
endoscopies, and
face,
but
he
didn’t
face, but he didn’t
more blood tests
think
to
ask
me
why
think to ask me why
than I care to
remember. Once,
it was there. Instead it was there. Instead
when I was an
he made a comment he made a comment
which hurt my
outpatient at Great
which hurt my
feelings. Despite this,
Ormond Street
feelings.
overall my
Hospital, I had a bad
classmates were
experience when a
quietly sympathetic,
vein in my hand
even if they didn’t understand. And
didn’t give blood. Ever since then,
it’s these things which really count.
whenever I have a blood test, I point
One day I gave a talk to my form
to a particular vein in my right arm,
and showed them the pictures of my
which has been 100% reliable. This
ulcerated gut. I wanted to explain
has proved that it’s useful to have a
what was wrong with me and
strategy to deal with these tests.
reassure them that it wasn’t
When I returned to school, still
infectious. Since then I’ve learned to
with a naso-gastric tube in place, I
be more open in answering
found that some people were less
questions about my illness, because
forthcoming. I had only been at my
there’s nothing to be ashamed of.
school for two terms, so I hadn’t
Whilst preparing this, I made a
made good friends yet. The pupils in
8
list of all the medical problems I
have encountered since my initial
diagnosis but I am not going to put
them in here. I’m not into lists of
difficulties, but I do have a list of
achievements:
• I have doubled my weight and I’m
•
•
•
finally taller than my mum.
I have become part of a group of
seven best friends.
I have excelled at rugby and
athletics at school, and taken part
in three dramatic productions.
I have played chess for Essex and
been a member of the National
Junior Chess Squad.
And more importantly, I also
have a list of opportunities:
• I will be completing my silver Duke
•
•
•
of Edinburgh Award at the end of
August.
I’m too small to play rugby now.
Instead, I’ve taken up racquet
sports and so will continue to gain
pleasure from playing sport.
I will be a sixth-former in
September, with all the privileges
and possibilities which come
with it.
I have chosen to take triple
•
science and maths for A level and
aspire to study biochemistry at
university.
And who knows what that could
lead to.
My goals may now be different,
but they are no less challenging.
No less satisfying. There may
be tougher times to come. I suffered
a relapse last Christmas and have
needed considerable medical
intervention this year, my GCSE year.
I know that I will soon be undergoing
surgery.
Yes, there is always a degree of
uncertainty.
But I don’t dwell upon it.
I try to be optimistic.
Before I finish I want to leave
you with one thought.
It is this. Don’t ask yourself
“Why me? I didn’t.
Ask yourself “Why not?”
I hope my story will give hope
and encouragement to others.
Update: Jonathan has had surgery,
is well, and has received excellent
GCSE grades.
9
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o
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l
My
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,
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n
a
tests
Richard
My name is Richard and I am 12
years old. When I was 9 years old,
I had very bad stomach pains. Every
evening I would have to leave the
dinner table because I was sick. Also
I was never able to get a good sleep
because I was often sick and had to
keep a bucket by my bed just in case
I was ill, which I often was.
My mum and dad took me
along to the doctors on various
occasions but they always thought it
was just a gastric stomach. It was in
10
April of 2001, when I had become
really unwell, that I was finally
admitted to our local hospital which
is Raigmore in Inverness.
They did lots of tests, but still
nothing showed up until they did a
white cell scan.
I was then admitted to the
Aberdeen Hospital, which is 100
miles from my home, and there I had
a biopsy done. When I woke up after
the operation I felt really strange.
That was because I had a nasal
gastric tube so that it could feed me
and give my bowels a rest. I had to
carry a back-pack which had a liquid
feed in it, and it had to be connected
to the tube for 20 hours a day. I had
this on for 6 weeks and was allowed
to eat nothing else except for jelly.
Then I met with the dietician who
said that I was then allowed to eat
whatever I wanted to.
I have recently been back to
Aberdeen to get another biopsy
done, just to see if everything was all
right which everything is. I now keep
well with medication and regular
checkups in my local hospital.
Thank you for taking the time to
read about my condition.
They did lots of
tests, but still
nothing showed up
until they did a
white cell scan.
11
l
l
a
t
i
How
began
Rebecca
It all began the summer of 1999,
when my family and I went on our
summer holiday to Spain.
As the holiday progressed on
I was suffering with agonising
stomach aches, which I had been
having for many years. I thought
nothing of it until I started to also
notice that I had lost a lot of weight,
was exhausted and I had also lost
my appetite. These symptoms
continued and got much worse, I
was at the point of having to make
12
the decision, if I was to fly home
early or not. Fortunately I managed
to hold on and stay until the end of
the holiday.
About a month later I had an
appointment with a bowel specialist,
he did an endoscopy and took some
biopsies of my bowel as well. I also
had a white blood cell count done
which wasn’t my ideal way to spend
the weekend! This was all to try and
pinpoint what was actually wrong
with me and even though I was
scared of what was ahead of me I
was prepared to do anything to find
out what it was.
He then transferred me to a
children’s bowel specialist, Dr Smith
who is now my present doctor. I had
further tests with Dr Smith such as
even more endoscopies, barium
meals and colonoscopies then the
doctors finally came to the
conclusion I had Crohn’s Disease.
But for many years before my
diagnosis I was back and forth to
the hospital with suspected
appendicitis, and gosh were they
wrong. I didn’t know what to feel
really when they told us because my
family and I hadn’t even heard of the
disease before. But Dr Smith
explained everything to us and I
thank her for all the help she has
given to me and she has certainly
helped me through the hardest
times.
I was then put on steroids,
which I am still taking, but even
I was back and
forth to the
hospital with
suspected
appendicitis,
and gosh were
they wrong.
though they were making a
difference, I came out in a mass of
spots and had a bloated face which
are side effects of steroids. This
made me feel very down because
people at school would name call
behind my back but I stood tall and
ignored them as much as I could. I
have a medicine now, which keeps
the side effects at bay.
I still wasn’t feeling very well;
therefore I was put on the elemental
diet drinks. I took 9 of these cartons
a day with no other food or drink for
10 weeks. This really helped me a
13
Rebecca when she was younger
lot and I was feeling much better in
a matter of weeks.
But, as soon as I had finished
my course of drinks I slowly started
to introduce food again, which
seemed to be working until I was on
food properly, then all my symptoms
started to come back; the stomach
aches, constipation, the tiredness,
14
feeling sick, lack of energy and my
loss of appetite therefore a few
weeks later I was put on the drinks
again – yuk!
I was determined not to let
Crohn’s get in the way of my normal
day-to-day activities so I decided to
get people to sponsor me to have my
drinks, I got a very positive outcome
of this sponsorship and I gave the
£400 I raised to CICRA. I then
decided that I would raise some
more money because it was so
successful and I had various events
such as coffee mornings and
musical evenings at my local church.
I gradually started to feel a bit
better when I was put on yet another
treatment called Infliximab which I
have every 10-12 weeks through a
drip, which isn’t as bad as having
another tablet to add to my
collection. It has dramatically helped
my mouth ulcers, which is fantastic
because it’s the only treatment
which has healed them up.
To this day I am still having
really bad spells of Crohn’s and still
missing a lot of school and I hope
that Infliximab is the end of my trial
and error of medications because so
far it seems to be working, fingers
crossed!
I have never let Crohn’s get me
down but lately I have been feeling a
bit depressed because I have never
been in remission yet but I am
hoping the Infliximab will solve this
problem! At the end of the day it’s
part of me and I have accepted that.
I hope that when other suffers like
me read this article they won’t feel
alone, we are all in this together and
we will get through this together.
known as Humira, which I take
myself every two weeks by a prefilled injection pen. This treatment
seems to be keeping me stable
along with Azathioprine which I have
been on for a number of years.
Therefore I feel even though I
have never been in remission, I am
pursuing every dream I have and
living my life to the fullest despite
this debilitating condition.
Update: It has been five years since
my article “How it all began” which
was in the summer edition of “the
insider” in 2003. I am now 20 years
old and attending York St. John
University reading Primary Teaching
with English Language. I am about
to travel to Pennsylvania, USA to
study at Juniata College for just over
four months as part of my degree.
I am extremely excited and
proud of myself that I am able to
take up such an opportunity and
prove to other sufferers that there is
light at the end of the tunnel and
despite all my setbacks, low times
and continually draining treatments
you can dream and make these
dreams come true.
I am currently on a new
treatment called Adalimumab also
15
Laura
It all first started over two years ago
in the Autumn of 2001. I was
regularly getting lots of abdominal
pains which caused me to wake up
in the night, and then not be able to
sleep because of the pain. At the
same time I completely lost my
appetite and whenever I tried to eat
I was sick. The only thing that would
help me was leaning against the
warmth of a radiator.
I went to the doctor a few times
because I was losing so much weight,
and my mum was starting to get very
worried about me. The doctor said it
was nothing major and I would get
better soon. Things didn’t improve
16
y
p
p
a
h
a
Not
s
a
m
t
s
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h
C
gastric tube, I had tried to drink it but
and on Christmas Day I just couldn’t
it was just so disgusting that I
eat anything at all, so, on Boxing Day
couldn’t manage the seven drinks a
my mum took me to the emergency
day that I was supposed to take.
doctor who said that I just had
The only good thing about being
constipation. She was so laid back
in hospital was that lots of my friends
and confident – how wrong could
came to see me and
she be!
brought me loads of
Finally, a few
I
spent
almost
all
presents. Even my
days later I was back
of
the
next
month
head teacher gave
at my own GP again
in hospital.
me a large cuddly dog
who referred me to
to add to my evermy local hospital,
growing zoo! My
and they admitted
school were very kind and said that
me the very same day. By then I had
I could go in whenever I felt up to
lots of ulcers in my mouth and they
working. I used to go in the
diagnosed then that it was probably
afternoons so that I missed English
Crohn’s, which of course I had never
and Maths, and all the boring lessons
heard of. I spent almost all of the
in the mornings! I gradually got a lot
next month in hospital.
better, I had a session on antibiotics,
A couple of days later I was
I had my tube taken out and went
transferred to Great Ormond Street
back to school full time. I went on a
Hospital where I stayed for a week
school trip to Dorset and took my
and had loads of tests, including
SATS at the end of year 6.
endoscopies and barium meals. My
Now I am in my second year at
mum was pleased that I was in a
secondary school, and I am lucky that
place where the doctors and nurses
I am feeling really well most of the
were so good, but to be honest I
time. I like swimming and kick-boxing,
didn’t care one bit because, by then,
and going out with my friends. I can
I just felt so ill!
now eat whatever I like, and only
The diagnosis was now
have to take two tablets a day. I am
confirmed as Crohn’s. I couldn’t eat
also very glad that I haven’t had any
any food for two months, but had an
major relapses.
elemental liquid feed through a naso17
Light at the
end of the tunnel
Anna
It started in August 2005. I don’t
remember much about it but on one
Saturday morning I fell out of bed
convulsing. My Mum and Dad called
an ambulance and I was taken to
one of the local hospitals. For the first
time in my life I had had a fit.
The hospital did some tests
which were pretty inconclusive. I got
home later that day, with family and
friends all coming to visit me.
Having spoken to various people it
seemed it wasn’t too uncommon for
a young person to have a ‘one off
fit’. Maybe it was just ‘one of those
things’ ... or maybe a sign of
something much bigger?
18
I was then sent to the
A few days later I started high
Gastroentology Department there
school. I began to get severe
and on the Monday they phoned up
diarrhoea with blood loss and was
to say they had a cancellation - could
going to the toilet around 8 times a
we come in tomorrow? So I went in
day. I thought it wasn’t anything to
the following day unaware of what I
worry about as it was just nerves for
was about to be told. He said I had
starting a new school – but it didn’t
either Ulcerative
go away. In addition to
Colitis or Crohns
that, I was losing
Disease – they
weight, had a loss of
I knew what would
appetite and my
happen. I would gain couldn’t determine
which one without a
energy levels were
weight
and
my
face
colonoscopy and
way down. I would
would balloon. But
endoscopy. So I was
come in from school
given another blood
and collapse on the
to be honest all I
test and the gastrosofa. I thought this
was thinking about
entologist said he
was just high school
at that time was I
would phone at the
and it took a lot out of
wanted
to
get
better.
end of the day with
you. But when the
the
results. So he
diarrhoea didn’t stop
did, and in two days I was booked in
my Mum took me to the doctors and
for a scope. The hospital had had
they carried out blood tests and
another cancellation. This all
analysed stool samples. Being a 12
happened incredibly fast and I took it
year old I wasn’t happy about this at
in my stride as usual and didn’t make
all but in the end I realised I had to
a fuss – what else can you do?
do it to get better. Then I had a follow
Then the hardest thing I had to
up appointment with my doctor about
do in the whole diagnostic process.
the blood tests and she said I had
I had to drink the stuff they give to
severe anaemia which meant my
‘wash’ you out. Drink the foul-tasting,
white blood cell level was really low
foul-smelling liquid and a lot of it. But
due to the blood loss. She put me on
I am very proud to say I managed it!
iron tablets and referred me to the
(Unfortunately the floor cleaner they
local children’s hospital.
19
use at school reminds me of it and
I am nearly sick!) On the Thursday I
was ready to go into the operating
theatre for the endoscopy and
colonoscopy. I had a Where’s Wally
book in front of my face while the
I am not going to lie,
it has had a very
pronounced effect on
my social life and
sometimes friends just
don’t understand that
sometimes you
physically can’t
do things.
anaesthetic was administered. I think
I managed to find 3 Wallys before I
drifted off to sleep! I wasn’t fazed by
the operation, I knew I would be fine
and, thankfully, I was.
I woke up sleepy but well and
went home later that evening with a
prescription for Mesalezine. I started
taking 4 of the horse-sized tablets
twice a day and the diarrhoea
stopped, I started to regain my
appetite and my energy levels
20
increased. I was in remission.
The school was amazing about
all of it and my friends just accepted
I had been ill for a while and I was fine
now. A year went past of school and
me being well and then things started
to go downhill in the winter of 2006.
I started to lose blood again and had
diarrhoea. I had relapsed and at the
next visit to the hospital it was
suggested I was put on a foam
enema. As you can imagine I didn’t
react kindly to this at all. I had to
administer it twice a day. All though it
wasn’t pleasant, I got used to it. But,
unfortunately, after Christmas the
enema still hadn’t worked. I was still
weak and feeling very ill. The
possibility of steroids had been
discussed in previous appoint-ments
and it was then the hospital decided
the only way forward was the steroids.
I knew what would happen. I
would gain weight and my face would
balloon. But to be honest all I was
thinking about at that time was I
wanted to get better. So I started on
60mg of Prednisolone. After six
weeks I was in remission. I had
gained a little bit of weight and my
face had swollen. Although when I
look back, I remember saying to my
Mum one morning before going to
Anna when she was on steroids
school “I don’t think my face is that
bad.” But it was. I think I didn’t look
in the mirror properly – if that makes
any sense – I saw what I wanted to
see. I was so delighted about coming
down on the medication. I started to
reduce it slowly week by week. Then
disaster struck.
When I had got down to 20mg
per day I relapsed once more. This
left the hospital with no choice but to
increase the dosage of the steroids
back up to 60mg. I was also booked
in for a further endoscopy and
colonoscopy. This meant again
drinking that wonderful liquid! The
second time didn’t differ too much
from the first. Thankfully everything
went without a hitch. I was also
introduced to the drug Azathioprine.
As I hadn’t tolerated the reducing of
the steroids well this was the best
course of action. To me it was just
another 4 tablets in the morning and
I didn’t care – as long as I felt okay.
I then ballooned to a size 18
and my face was worse than ever
before. I was so hungry most of the
time. I would eat breakfast – lunch –
tea and then be hungry 30 minutes
later – another one of the side
effects.
The hardest thing I have ever
had to deal with – was the comments
at school. I was being called ‘gerbil’
and ‘hamster.’ Before people started
to comment on my weight gain all
I had cared about was being well
again; but it soon turned into me just
wanting to be back to an acceptable
size. I for some reason didn’t
immediately tell anyone about the
remarks – which I know now, was a
mistake – but a teacher overheard
them and action was taken. After
that, luckily, the comments stopped.
This was such a relief. But never the
less their words stuck with me. I
began to get fed up. I didn’t care if
I relapsed again. I wanted to be the
old looking Anna. Of course I did care.
21
I did want to get better. I was just so
affected by the situation at school.
However, in the July of 2007
I went to Switzerland with the
Geography department. I still was a
size 18 so, to be perfectly honest, it
wasn’t the most enjoyable of trips
and I felt very isolated. But I survived.
The 1st of July was a massive
day – it was the first day that I didn’t
have to take the steroids. I was free!
I hadn’t relapsed and I had a
wonderful holiday in America to look
forward to. I remember the hospital
saying that the weight would drop off
me, but I didn’t find that this was the
case. It took around 6 months to get
back to my usual weight. I’d worked
hard. I ate lots of fruit and I really
stuck to it. It paid off. I was my usual,
happy size 12 and now I have
accepted that and I like the way I
look. (Not when I’m just woken up in
the morning though.)
When I went back to school in
the August 2007, I was probably
feeling more vulnerable as my
memories of last term weren’t that
great. I had nothing to worry about.
Everything was fine. Now I am doing
great. I haven’t relapsed since coming
off the steroids. Yes, I have the odd
‘off’ day, but all in all I am well.
22
I am just grateful I am not on
steroids. They are an evil necessity.
Although you gain a lot of weight, they
make you feel so much better and
your quality of life improves so much.
It’s hard but the rewards are great.
I have just sat my Standard
Grades and got the results back and
I am and so pleased with the results.
I also just got back from a wonderful
holiday with my family. I am not
looking forward to going back to
school but I just say to myself ‘at
least you aren’t a size 18 this time.’
I am not going to lie, it has had a very
pronounced effect on my social life
and sometimes friends just don’t
understand that sometimes you
physically can’t do things. But then
you get that friend who is amazing
and seems to understand and accept
you and your illness.
I do wonder what I will be like in
10 years time and how my illness will
affect me. But that’s in the future and
hopefully a cure will be found. It is
incredibly hard to be a teenager, have
an incurable illness, exams and other
stresses but that just proves that we
are stronger than most people our
age. Just try your best and never give
up. That’s all you can do. There is
always light at the end of the tunnel.
There are benefits
to having Crohn's
Louise
Hi, my name is Louise, I was
diagnosed with Crohn’s disease on
21st October 2005, and I am now 18
years old. My problems started in
December ‘04 and January ‘05 when
I was 14. I lost a lot of weight, felt
exhausted and had to take endless
trips to the toilet all the time. It
gradually got worse until I was taking
medication to stop the symptoms
every other day, so I was referred to
the local hospital by my GP.
It seemed to be certain foods
that would upset my stomach, so I
tried cutting out wheat, gluten and
milk products from my diet, and
23
although this helped a lot, the
problem stayed. I saw the doctor at
my local hospital and she said that it
wasn’t Crohn’s; it might just be food
allergies or stress. After doing blood
tests which determined that I wasn’t
allergic to any foods, it was a case of
“wait and see”.
I carried on with the diet until
everything got worse. I started to get
bad pains in my stomach whenever I
stood or sat for too long, and it was
now food in general that made it
hurt. After one particularly bad spell,
my Mum took me to A & E where they
did various blood tests and
ultrasound scans, after which, I was
referred to a paediatric
gastroenterologist. It was another few
weeks of “wait and see”.
I was waiting for a barium meal
when the pain got so bad that I was
referred to the Royal Free hospital in
London. There I had an endoscopy
and colonoscopy and was diagnosed
with Crohn’s on 21 October. I was put
on the liquid diet (modulen) for 8
weeks. I got on fine with this, and
began re-introducing foods on 22
December. I introduced the foods as
I was told to and got as far as a
banana when I had a stomach ache.
I waited a week then had another,
24
and the same thing happened. I
carried on with the list, not having
any more bananas, but had a severe
reaction to an orange and was sick
all night. I was back on the full
amount of modulen again for a week.
I carried on for a while, just
eating a little, but after a visit to the
Royal Free on 22 Feb I was told to go
on a fibre free diet. So I was now not
allowed to have any fruit or veg, but
was eating pasta, bread and yoghurt.
It made no difference.
I had a barium meal done at my
local hospital, and an ultrasound to
see if there were any blockages, and
there seemed not to be, although the
doctor said that there was a
possibility of a slight stricture. We
decided that I would stay on just the
modulen whilst I did my GCSE’s for a
few months, which was difficult, but
I managed it. I have been back to
London again for a final time; I had
a colonoscopy, which showed that
everything has healed up for now.
I joined CICRA when I was first
diagnosed, and I gave my details to
be put in the penpal scheme as I had
never met anyone else with Crohn’s
before and I had no idea how it would
affect my life. Although I never
actually wrote to anyone myself,
you’ll only know how hard it was and
2 people wrote to me almost straight
how much it took you to get there.
away, and I have now been talking to
At the moment I am well,
them for almost 2 years. Admittedly
finished
the last year of my A levels
it has been hard to keep writing to
and am starting to
them and them to me
plan the move to
as we’ve had to deal
I
still
remember
university which
with the pressure of
means
I have even
endless schoolwork
how my friends got
less time than last
and lack of time as
me through the
year! However, I still
well as ill spells.
times of being ill.
remember how my
However, it has
friends
got me
definitely been worth
through the times of being ill, so I’m
it as I am now writing to several
hoping to keep supporting them
people of a range of ages and I feel it
when they are too. I know that these
has helped me hugely. They
friendships are likely to last the
understand when I’m feeling rough or
distance, as we’ve been there for
my friends don’t get why I can’t do
each other through the good and the
certain things, can’t eat certain
bad and I would say to other people
things. And although Crohn’s has
that if you are finding it tough and
developed the friendships, that
want to talk to someone who knows
certainly isn’t all we talk about! It took
what it’s like then have a look
me a while, but I realised through
at the penpal section of the
talking to the others that you can have
website/newsletter and see if there’s
a life even with Crohn’s, it’s just a lot
anyone you would like to talk to. The
more varied. You can still go on
list has grown enormously over the
holiday; you can still achieve in
last few years, so there’s bound to be
exams, go on school trips and learn to
someone your age!
drive. I’ve done all of these, and more,
For me, I would say that there
and although I still worry about things
are benefits to having Crohn’s
(walking in Wales was a big worry!)
(although it might take a while to
I’ve learnt that if you go for things
see), and certainly making these
then you’ll get a much bigger sense of
friends has been one of them.
achievement at the end because
25
e
f
i
l
y
m
g
n
lP anni
!
t
e
l
i
o
t
a
d
n
u
o
ar
Ellesse
My name is Ellesse, and I have been
suffering with Ulcerative Colitis ever
since I was 9 years old. I’ve now
undergone surgery for my condition,
and would like to take this
opportunity to give something back
to CICRA, and all of its readers, as
the ‘Insider’ magazines have helped
me get through the hardest years of
my life (so far).
At first I felt like a freak, as I
didn’t know anyone who went to the
toilet as much as me! I found it hard
to tell anybody about my secret, so
I didn’t for 3 months; I felt my family
would be disappointed in me for
some reason. But now I know how
26
common IBD is in younger people,
I suppose it became like second
nature to me. However, it was so
frustrating to have to plan everything
around a toilet! It depended what
type of toilet it was and where it was;
I didn’t like using public toilets either.
I went to see endless doctors
and nurses, I was so nervous every
time I went to see my doctor as I was
in fear that he would put me on more
tablets. I especially hated steroids as
they made my face go puffy!
It got to the point where I
couldn’t go 2 weeks without being
on tablets, as my symptoms would
always start again. At my worst I
was going to the toilet up to 30
times a day.
Surgery was mentioned, and I
was really worried about this at first,
but my life was being taking over by
Colitis, so I decided it was the best
thing for me to have done.
The surgeon took away my large
intestine, and I had a temporary
ileostomy for about 6 months, then
I had a further operation to reverse
the stoma and put everything back
into place. Apart from some
discomfort when I woke, it was the
best thing that I could have done. I
got through it all with the support of
I especially hated
steroids as they
made my face
go puffy!
my family and friends, and I am very
grateful to them for that.
I can now get my life back on
track, and apart from the patchwork
on my tummy you would never know
I had an illness, especially as my
toilet routine is now back to normal!
27
Don't despair,
don't give up
Fiona
My name’s Fiona, I’m 15 years old,
I live in Nantwich with my mum, dad.
I have one sister and two brothers.
I have had severe food allergies to
wheat and nuts since birth, and also
have had kidney problems since I
was 2 years old, and been under
the care of a consultant.
I was diagnosed with Crohns
disease in 2005 at 13 years old. Over
the previous year we had noticed I
was developing an intolerance to
dairy products, mainly yoghurts as
I would have sudden bouts of
diarrhoea that would last about 24
hours. This is my story.
Early in 2005, I started to lose
28
weight, and at first mum thought it
was because I was growing and doing
a lot of sports. In fact I was mad on
sports! I enjoyed doing mainly
hockey, but also netball, rounders
and many other sports. Most nights
and lunch times at school I had
sports clubs – I was actually sports
captain.
I was also an A* student, and at
the top of my year. I enjoyed most
subjects especially art and PE.
Around April/May time, mum was
noticing I didn’t seem to have an
appetite and was becoming
concerned as I was ‘picking’ at my
food. I had noticed I was eating a
little less as I normally ate a lot! But
didn’t know what mums problem
was!
I remember mum and dad going
to parents evening at school, and
came home concerned as 4 teachers
commented on my weight loss, and
low moods.
Mum decided it was time to
discuss things with the GP who
wasn’t overly concerned but
reminded me of the importance of
eating! Especially to keep up the level
of sports as I was becoming
breathless and tired, and had to stop
during matches at times.
In June we went to France on
holiday, and I had lost about a stone
in weight by this time. It was whilst in
France that the diarrhoea started but
we felt it was probably the change in
water and different foods. However
on returning home it continued. I
began to feel lethargic, loss of
appetite,
further
weight
I also had ulcers
loss and
in my mouth but
stomach
didn’t realise the
cramps. I
significance then.
went back
to my GP,
who
diagnosed appendicitis. I also had
ulcers in my mouth but didn’t realise
the significance then.
The appendicitis then turned
into acute appendicitis, and I was
admitted into hospital. However, after
being prodded and poked, stool
samples taken, blood tests and
weighed, I was discharged, as they
couldn’t find anything.
Mum wasn’t happy, and
questioned the doctor’s decision. I
was unable to walk very far and spent
most days lying down. I was then
referred to a bowel specialist who
found a ‘sausage’ shaped lump in my
29
right side of my stomach. Nothing
showed up on Ultrasound, and the
specialist felt it would settle down on
its own in time.
My weight was still dropping.
I had lost about 2 stone and was
losing about 3lb a week! My mum
questioned the specialist, and he
reluctantly decided to examine me
again. The lump was still there and
he decided to do a CT scan to have
a closer look.
The scan showed a thickening in
the terminal ileum, and later that day
mum received a call from the
consultant saying he was almost
certain it was Crohns disease and
was referring me onto a
gastroenterologist.
I was diagnosed two weeks
later with Crohns in three places,
the terminal ileum being the most
chronic. I was put on elemental
feeds, pentasa and budesinide
steroids but continued to be ill and
was rushed into hospital as an
emergency three weeks later with a
blockage. I spent two weeks
extremely poorly, everything was
given intravenously and I had endless
blood tests. After ten days of no
improvement, the consultant,
reluctantly agreed to put me on an
30
NG tube feed, using Modulen.
With no food, only drinks of still
water, I still felt hungry. I was then
referred to Alder Hey Childrens
Hospital in Liverpool, where I met my
consultant Dr Casson and my
specialist IBD nurse Kay, who has
been very supportive.
I went back to school part time
and kept my NG tube in for the full 8
weeks. I had the homecare team of
nurses visiting me at home each
week as well as the dietitian. I came
off my tube feed just before
Christmas but ended up back on it
8 weeks later.
I hated going out in public as
I was very conscious of it and felt
people were staring at me.
When I went back to school I
didn’t like being asked why I had the
tube back in so I decided to let the
nurses teach me to pass it myself.
From then on, I passed my tube every
night – fed overnight – then took it
out every morning.
I came off tube feed, but was
back on it again about 7 weeks later.
We then discussed Infliximab as
treatment but was admitted to Alder
Hey for endoscopy and colonoscopy
and was put forward for bowel
surgery. I had to go back on tube
I was so upset I
cried a lot and didn’t
want to think about
it. I knew I wouldn’t
be able to cope.
feeds, for the sixth time, to give me
some nourishment as I wasn’t fit for
surgery at that point. Two weeks later
I went to see the surgeon, who
decided to bring my surgery forward.
I had a right hemicolectomy
(removing half the ascending large
bowel, the terminal iliem, a small
section of small bowel and also my
appendix). I had an epidural in my
spine and for the first few days felt no
pain, but then it stopped working and
I started to get terrible pain.
One of the nurses kept pushing
me to do more and wouldn’t help me
when I asked her because she said
I should be doing it for myself but I
was in too much pain. I had an x-ray
and it was found I was having a leak
at the join of my bowel. I became very
poorly and was told one night that
I would have to go back to theatre
and have a stoma bag. I was so upset
I cried a lot and didn’t want to think
about it. I knew I wouldn’t be able to
cope.
It was only through mum and
dad calming me down and telling me
it would be fine that it didn’t worry me
so much. Later I found out that mum
and dad were very worried and had to
hide it from me! The surgeon decided
to take me back to theatre the
following morning but by a miracle,
that morning I just felt so much
better! The consultant and mum
walked in at the same time and
couldn’t believe how much better I
looked. The consultant examined me
and even said ‘you’re not trying to
pull the wool over my eyes are you?!’
He told me he would leave me for
now but would be back later.
I continued to improve and was
discharged 2 weeks later. I was very
weak and had problems with my
back, but my GP felt it could have
been the epidural. My back is fine
now. I had my operation in November
and started back at school part-time
in February then full time after Easter
– the end of April.
The hardest part has been my
fitness levels. My energy levels were
low for a long time and although I put
lots of weight on, it was all fat, not
muscle. My school has been brilliant.
31
My games teacher has tested my
basic fitness and is devising a
training programme for me to help
build up muscle. The only medication
I am on now is Azathioprine and will
be on for a few years.
I lost almost 3 stone in weight
at one point but I’m now back to
where I was before I was ill. I’ve also
got much taller and am almost the
same height as my dad and my
brother, but much taller than my
mum and my big sister!
I suppose the worst things
about having Crohns is the fact you
don’t know when it could flare up,
what you’re going to do about it –
and for me the thought of having to
go through passing a tube every day.
But you just have to stay positive and
not think about those things, and just
live for each day. Don’t think about
something you might like to do, just
do it.
I lost my fitness level and
haven’t been able to do my sports for
a long time, which has upset me, but
I’m now determined to get back to
peak fitness. I get frustrated but then
I feel so happy that I feel so well after
going through 2 years of hell. I was
also put in lower sets at school for
some subjects to take some pressure
32
off. It made
me feel that
the Crohns
had won
again, but
the one thing
my Crohns
hasn’t taken
away from
Fundraising Fiona
me is my art.
I have taken
my art GCSE a year early and my
teacher says I have got an A* or an A.
This last 2 years have been
difficult but I think its made me
stronger. I’ve given my mum so much
stress and taken out all my
frustrations out on her, but she’s
always stood by me and been there
for me any time I’ve needed her.
Encouraging me to be strong and to
take control when I’ve felt like giving
up and just crying. We’ve both
learned to cry with each other and
many times have just sat and hugged
and talked.
One of us will say “I love you”
and the other will always say I love
you more and that’s our special
saying to each other. I know I mean
the world to mum and without her
I wouldn’t have got through and
become the strong person I am today.
We never plan ahead and often do
things on the spur of the moment.
I’m so happy to be well and if
someone had told me last year that
I would feel this good a year later, I
would never have believed them.
I couldn’t see an end to this illness
until I had my operation. I had a
psychology team visit me each day I
was in hospital and it really helped to
talk to them about things. I now
accept I have Crohns. I’ve found that
once you’ve accepted that it’s yours
and here to stay instead of secretly
wishing it would go away it makes
you stronger which is always better!
I do get ulcers in my mouth from time
to time, but its mainly if I’m
‘stressed.’
I suppose my take home
message today is to share the good
and the bad times with your mum or
someone close, you don’t have to do
it on your own. Take control of the
disease and not let it control you.
Never look too far in the future and
take each day as it comes.
If it’s a good day then enjoy it
to the full. If it’s a bad day, accept
it and take it easy. I have found by
focusing on others also helps,
there’s always someone worse off
than yourself so get involved in
charity work. I’ve made over £1,000
for CICRA this last year and I’ve also
been given the title as Charity Coordinator at school. So I hope those
of you who are where I was last year.
Don’t despair. Don’t give up. Your
time will come sooner than you
think. Just stay positive and life will
get easier, trust me I’ve been there!
33
Once upon
a time
Claire
Once upon a time, Crohn’s disease
was the end of my world. Yesterday
it was a blessing, and last week I
wanted to close my eyes and not
have to wake up. I feel like the
luckiest person alive right now.
That may sound strange,
especially if I was to tell you that I am
writing this from my hospital bed. But
I am so lucky to have all the things in
my life that I do – especially my love
for music. Music has always been my
escape. It inspires me. When I feel
sad or lost, everything becomes
magical again. When I realised that
other people found my music
inspiring too I was deeply touched.
I often wonder whether my
music really is as special as people
tell me it is? Recently a ten-year-old
girl who had been diagnosed
contacted me. Her mother explained
34
me. It has taken me almost for years
to me that whenever her daughter
to realise that what you see in life
feels sad, she goes to her room and
and what you know in life, changes
listens to my CD time and time again.
you.
It’s part of me. It’s who I am.
That’s when I know that it is worth it.
I don’t have all the answers yet
If my music can help one person, or
– far from it. But that’s what life is all
inspire just a selection of people then
about – it’s a journey. So I have
that’s the most wonderful feeling in
decided to accept
the world.
Crohn’s and even
Although I was
I
wanted
to
show
though there will
13 years old when
other
young
people
always be those very
I was diagnosed,
I believe I’ve had
that Crohn’s isn’t the tough times, I
wanted to show
Crohn’s disease all my
end of the world.
other young people
life. I felt ashamed of
that Crohn’s isn’t the
myself and my
end
of
the
world.
If you choose to –
condition, and every day I secretly
you can make life – like I have. But
hoped that tomorrow I’d be cured.
you need to trust yourself and believe
Crohn’s and Colitis were forbidden
in yourself first and don’t do it for
words in my vocabulary! I was
anybody
else, do it for you – you
depressed and I felt stupid. Why
deserve to be happy.
couldn’t I have appendicitis, diabetes
or a broken leg? Or at least
Note from Editor: Claire is an
something normal? Why was I given
accomplished musician who plays
this thing that everybody seemed so
and sings her own compositions.
embarrassed of? Crohn’s isn’t just a
Just prior to writing this story Claire
physical battle within your head. I
recorded a CD which was sold in aid
dealt with it like any teenager would.
of CICRA. Claire went on to Drama
I wanted to remember the person
School but is now training to become
I felt I was before I became ill. But I
a Paramedic and living life to the full.
couldn’t remember her, she felt like a
stranger. I convinced myself that as
soon as I came of steroids, I’d know
myself again. I was wrong. This was
35
Sarah
Despite having Crohn's,
I raised over £6,000
for research
Hi, my name is Sarah. I am 15 years
old and I was diagnosed with Crohn’s
disease 4 years ago – 2 months
before I left primary school.
Fundraising: Sarah (centre)
36
I had been ill for over 6 months,
with extreme tiredness, constant trips
to the toilet and my weight had
dropped to under 5 stones despite
my healthy appetite. I had visited the
doctor as my family and I were
concerned about my health, and as
my Auntie had Crohn’s Disease we
suspected IBD. Despite this, the
doctor refused to examine me, told
me that I was far too young to have
Crohn’s and that it was “just a
phase”. However, the symptoms
persisted and I went to visit another
GP who immediately recognised my
ill-health and I was admitted to
Peterborough District Hospital for
overnight observation.
Following this, I had a
colonoscopy and was diagnosed with
Crohn’s Disease on 10th May 2004.
The news was expected and to be
honest I wasn’t altogether that
bothered – I think I was too young to
fully understand the implications of
the disease.
That same day I was told that I
would not be able to eat anything for
the next 6 weeks so that my bowel
could be given a chance to rest. The
only thing I could have was 2 litres of
modulen each day, a liquid not unlike
baby milk. However, I could not bear
the thought of having to drink so
much of it everyday as I really did not
like the taste; so I had an NG tube
put down (a plastic tube that is
inserted through the nose, past the
throat and down into the stomach).
This may not sound nice but I soon
discovered that if you relax and
swallow you can barely feel the tube
going down.
After this, the dietician showed
me how to use the pump for the
modulen and how to keep my tube
clean etc. I went home that night, did
my year 6 SATs all week and had no
problems for the following six weeks,
apart from finding not eating quite
tough at times. It was around this
time that I started taking azathioprine
The doctor refused to
examine me, told me
that I was far too
young to have Crohn’s
and that it was
“just a phase”.
– a drug that I continued to take for
another 2 years.
After being tube-fed for 6 weeks,
food was re-introduced to my diet and
I went into remission, but not for very
long. The symptoms soon returned
and for the next year or so I tried
various types of medication, high
doses of steroids which I hated
because my face became round as
I put on a lot of weight, and another
8 weeks of being tube-fed. Most of
these treatments stopped or eased
my symptoms, but none for very long.
During this time I had another
37
colonoscopy at Leicester hospital and
was then referred to the Royal Free in
London, under the care of Dr Rob
Heuschkel. Despite the travelling, this
was the best thing that could have
happened to me – all of the doctor’s
were very experienced and I now had
an IBD Nurse, Mary Brennan. I can
contact Mary whenever I need to and
she makes sure that all of my
treatment and hospital appointments
fit around my life outside of Crohn’s,
as it is very important to try and
maintain a good quality of life.
It was at this hospital that I had
a right-hemi collectomy, an operation
in which the most badly affected
section of my large bowel was
removed. The surgery was successful
and after staying in hospital for a
week I had to spend 6 weeks at
home to rest and build up the
strength to return to school. I lost a
lot of weight during this time, and
even though I was never in any pain
due to the morphine and
paracetamol I was given, those few
weeks were quite tough emotionally,
but all of my family were very
supportive.
A few months after my
operation, my symptoms returned.
They were not as severe as before
38
but I was finding it very difficult to
lead a normal life, like going to school
and meeting up with friends. I spoke
to my IBD Nurse and together with my
Doctor we made the decision to try a
new drug called infliximab. Within
hours of my first dose I felt much
better and my symptoms
disappeared almost immediately.
Infliximab is given as an infusion and
so every 8 weeks I go to hospital for
just over 3 hours and it is given to me
through a drip. I have now been
taking infliximab for over 2 years and
even though I am not completely well,
if I take care of myself and try not to
get stressed about anything I am well
enough to lead quite a normal life,
with enough energy to see my friends
regularly.
Since being diagnosed I have
had an amazing amount of support
from all of the doctors and nurses
that have treated me, especially my
IBD Nurse. My family and friends all
understand my situation and realise
that Crohn’s can be very
unpredictable, and so I have found
that the best way to deal with
everything is to keep them all
informed and be very open about my
disease.
Having IBD however does put
not just letting it take over my life. It
pressure on certain relationships but
makes me feel as though I am
this can be food for learning who your
contributing to finding the cure, or at
true friends are, the ones that you
least better treatments for IBD as I
can trust, as the friends that stick by
know that research is happening and
you are the ones worth holding onto.
I would strongly encourage you to do
My school has also been supportive,
the same.
making special arrangements for me
As odd as it
and organising home
may sound, there
schooling for after my
surgery. Most of the
Before my diagnosis are advantages to
having Crohn’s
teachers have been
I
wanted
to
be
a
Disease in my
very understanding as
teacher,
but
now
I
opinion. The best
I am a conscientious
want to pursue a
one is not having to
student, and am still
queue for rides at
getting excellent
medical career and
theme parks! I soon
grades despite
have decided that
found out that
everything.
I
want
to
be
a
visitors with
For the past 3
pharmacist.
disabilities to places
years I have been
like
Thorpe Park and
fundraising for CiCRA
Alton Towers are
and have so far raised
allowed to skip the queues and take
over £6,000 through various events.
their friends/family with them, and so
Because of how I have dealt with
my friends and I always have the best
having Crohn’s Disease and the
time ever as we get to go on all of the
fundraising I have done, my school
rides (usually more than once)!
nominated me for the Princess Diana
I also appreciate the
Memorial Award for Inspirational
experiences that IBD has given me.
Young People and I was presented
I have met many amazing people
with this in 2006. I’ve found that
and have been exposed to so many
raising money for research into IBD
different environments. I have had
has given me a more positive outlook
the chance to get involved with
on Crohn’s as I feel as though I am
different charities and have had more
taking action against my disease and
39
opportunities than I would have had,
had I not been diagnosed with
Crohn’s, such as being in this book!
Since being diagnosed I have
matured and developed a more
resilient personality, and I now feel a
bit more prepared for life.
Before my diagnosis I wanted to
be a teacher, but now I want to
pursue a medical career and have
decided that I want to be a
pharmacist. I have recently begun
working in my local pharmacy which
I absolutely love, and having Crohn’s
has not been a problem for me at all,
if anything it has been an asset as
I already know about some of the
drugs that we dispense.
Having IBD can be scary and I
do worry that it may affect my future
but recently I have started going to
counselling sessions and have
realised that even though it is good
to have a “big plan”, it is also
important to focus on life day by day.
It’s OK if one day you feel like rubbish
and need to have some time alone,
but make sure that you control your
disease, not the other way around.
40
t
s
e
b
e
h
t
e
k
a
M
s
'
n
h
o
r
C
r
u
o
y
of
Sophie
My name is Sophie Puritz, I am 19
years old, and I was diagnosed as
having Crohn’s when I was 13. At
the time, I don’t think the full
implications of the diagnosis struck
me; I had been ill for so long that it
was just a relief to find out what was
wrong. However, as I drew further into
my teenage years, I recognised that,
whether I liked it or not, the disease
was going to pose certain problems
for me.
Well, I can sympathise with
other young people who may be in a
similar situation to that I was in; the
prospect of going out into the world,
41
considered if things had been
finding a job or a place at university
different. But despite this, I bizarrely
is daunting enough for anybody, but
have a reputation for being the most
having that combined with the worry
active of my housemates and have
and doubt that perhaps you won’t be
not had to miss a single day’s work
able to manage can be terrifying. I
through illness since
remember crying
coming to university.
heartily at the
Do
what
you
can
On a more
thought of being ill
philosophical level,
and miles away from
and never give up,
over the past couple
home, but after
because the harder
of years, as I have
pulling myself
earned
your
learnt
so much more
together, sternly said
achievements,
the
about that mysterious
that of course I could
more of worth and
world outside school,
do it, and that just
and met so many new
because something
admirable they are.
people,
I have
is hard, doesn’t
realised just how
mean you don’t do it.
much my illness has affected my
I am now in my second year
values and attitudes to a wide variety
studying medicine at Cardiff, and (so
of
matters. Some people talk about
far!) thoroughly glad that I chose this
their gap years as having made them
particular path. I have my stalwart
‘grow up’ a lot; I believe that dealing
family and much appreciated friends,
with something such as a chronic
at home, school and university to
disease in childhood is just as
thank for my progress; without their
effective in this respect. You might
unfailing support and
even call it, to use a cliched but
encouragement, I would have fallen
appropriate phrase, ‘character
by the wayside long ago! I won’t
forming.’
pretend that I don’t sometimes sit
My early experience of the
down in exhausted frustration,
medical world from hospitalisation
wishing that I can’t just be like other
and outpatients appointments has
people, have more energy, or have
also given me a marvellous insight
the chance to join as a military
into what it really feels like to be a
doctor, which I might have
42
patient having to undergo unpleasant
and often frightening procedures.
This sort of experience, I am sure, is
not only relevant to those aspiring to
a medically orientated career, but to
anyone, to understand and
empathise with those around them.
While I would not be so
presumptuous as to say that
everything happens for the best, I
would say that you can make the
best out of almost anything. To those
who are stuck with Crohn’s and are
worrying about GCSEs, A levels,
employment or the future in general,
I say this: take what you have; use
what experiences you have been
given; turn them to your advantage;
do what you can and never give up,
because the harder earned your
achievements, the more of worth
and admirable they are.
Update: Sophie has now qualified
and is working as a junior doctor in
North Wales. She has recently had
surgery herself and her colleagues
were very supportive. She says
“I am back on the right side of the
bed now – standing by it, not in it!”
43
Jack
A rollercoaster ride
Thank you lads! From left to right: Josh, Ashley, Glenn, Aaron, ME, John
Also thanks to Matt, Ashley, Ryan
It all started about four years ago in
December; in the last couple of
weeks of year 6 junior school. I
started with a diarrehea bug which is
when I went to my local GP who told
me to starve for 24 hours (which
wasn’t a good idea given my
44
condition). As I went about my 24
hour starving I realised that I started
having bloody stools (that’s poo to
you and me).
I shouted my mum and she said
that sometimes happens and after
that I was going six to eight times
with blood. So my mum took me
straight back to my GP; and I sat in
the waiting room and felt sick, tired
and faint, after about ten minutes
waiting I passed out in the waiting
room.
After coming around I was then
referred to Kettering hospital to get
checked out, I then was told I might
have numerous of things wrong at
this time so I was told I needed
an endoscope (a camera up me back
side and down my throat) my dad
then booked me in because we were
covered by private, so I was fitted in a
couple of days.
I was going through a lot of
emotional stress; because things
were ticking through my head like
have I got cancer, will I need an
operation. My mum was very
supportive as she was trying to make
a joke of it as mums do in these
situations. I then had it done and I
was told I had Ulcerative Colitis, I was
immediately put on prednisolone
steroids and that made me a bit
better but it was the side affects I
didn’t like.
I was going through a lot of
emotions, on one side I haven’t got
cancer but on the other I’ve got this
disease which I will have until there is
a cure. I was then sent to a paediatric
doctor at Kettering who was like the
middle man he was always
telephoning another consultant at
Leicester royal hospital so my parents
decided to be referred straight to him
he needed to do a test involving a
tube going up my nose while
conscious, and putting dye in my
intestines and then took x-rays. This
was very painful and I wasn’t going to
have that done again; luckily I didn’t
need it doing again.
So there I was with Dr. Green
sorting out my medication, he started
me on Pentasa along with the
steroids. He explained to me what I
have and what treatments to go by;
he also said what might flare me up.
Dr. Green said that I should not eat
high fibre foods (fruit, vegetables and
The emotions I was
going through at the
time were hard to
explain; there was
shock more than
anything.
45
lactose); also he said not to be
stressed out a lot. He also explained
the side affects of the steroids, such
as bloating, hot sweats, swelling of
the face and mood swings. The
emotions I was going through at the
time were hard to explain; there was
shock more than anything. So I went
home and gave the tablets time to
kick in, I was feeling scared mentally
and tired and exhausted physically
(well I was losing a lot of blood) I was
also in a lot of abdominal pain. I was
now at the start of a very long
rollercoaster ride.
Ever since then the doctor
couldn’t get me on the right
combination of drugs to keep me
stable. But I did start to notice the
difference that the side effects of the
prednisolone steroids. Throughout
that year I was flaring and then
having a week break (off steroids in
the breaks), on all of my flare ups
I would lose a lot of weight in the
space of a couple of weeks. For
example when I was 12 years old I
was 4 stone 7lbs; and I was going
toilet 16 to 20 times a day.
After a year of being diagnosed
with Ulcerative Colitis I was mentally
up to the point where I wanted to end
my life, some of it due to the steroids
46
and family problems. Then three days
before my birthday my dad walked
out on me and my family, which
made me even more stressed and
flared me up. On top of all that I had
school to contend with.
In that same year I had another
endoscope and colonoscopy this was
just to check that the inflammation
hadn’t spread further: which it hadn’t
thankfully. I was becoming worse
mentally than physically as I was
putting on a lot weight, also people
were starting to look at me
differently, like I wasn’t one of them.
I know it sounds mad but that was
what I was going through, I was
offered a psychiatrist but I said no
out of stubbornness as I thought I
didn’t need help. After getting worse
for a couple of weeks physically and
mentally; one night I went to sleep or
a trance and started to scratch my
arm until I woke up and found that
my arm was bleeding.
The morning after I told my mum
and she rang the psychiatrist Dr
Tricky; I was fitted in the next day, so
I went and saw him and surprisingly
I was glad I went. Yes it was scary at
first but I just talked to him one on
one and he was so helpful. He set me
goals and it was all confidential so if
I’m going to school
else I’m going to
have to stay behind
another year.
I need to say stuff without my mum
or dad knowing I could. I told him that
I didn’t like the way I looked after
taking steroids and how people
looked at differently. I never was very
open to anyone and used to bottle
my feelings up but it really helped to
talk to a stranger who had helped
people like me. I saw him every few
weeks and I spoke to him and it
released some of the stress, which
made me feel better mentally.
So through all that mess I was
missing a lot of school in year 9; I
attended 21% of school, mainly due
to my illness. I was receiving home
tutoring which I didn’t like it because
even if I didn’t feel well in the
morning they couldn’t be cancelled
because they come at half past eight.
I had this for a couple of months until
we had a meeting for year 10 were
they said I was only going to be
concentrated on my maths, English
and science. So in that meeting I
asked if I average 3 days a week can
I do my options and they seemed
shocked but I felt they didn’t believe
I would do it. They said stuff like
when you come in to school you can
have your options.
So it was two weeks before
September and the beginning of year
10 and I said to myself, I’m going to
school else I’m going to have to stay
behind another year. So I went and
got my GCSE options and averaged
three to four days a week; and yes I
do have bad weeks were I was ill but
when I’m Off school, I do school work
so I don’t fall behind.
I do feel sorry for those who
suffer with Ulcerative Colitis or
Crohns, but the best bit of advice I
could give is to keep fighting and find
the end of the dark, dreadful tunnel.
I think the worst part of this disease
is probably the steroids, as the side
effects twisted me mentally up to the
point were I was In a situation were
when I was ill I would not take the
one thing that would make me better.
Ulcerative Colitis also effect my social
life as I had to give up me football;
due to the steroids putting on so
much weight and through other side
affects they caused.
To the present day I’m doing well
47
and I would like to thank all the
doctors that I’ve been with since the
start, also to a strong set of mates
who have been there when I was off
sending my homework, asking how I
am. I also would like to thank my Nan
and Pap for looking after me when
I am off school. I would like to thank
friends of the family who have been a
big help. The biggest thank you would
go to my mum who was always there,
at every appointment and for every
time I needed her and for looking
after me when I’m ill.
So that’s my story from the start
to the present day, but I’m still on the
rollercoaster hoping for the end of
this horrid ride.
48
Luke
On an elemental diet
but thinking of fish
and chips
My name is Luke and I am 13 years
old and I am writing to tell you about
my experience with ulcerative colitis.
In May 2005 I started to have blood,
the day I was going camping with my
local Boys Brigade. So I had to be
careful of it.
When I came back from
camping my parents took me to my
GP. My GP was not sure what the
problem was. So he referred me to
the local hospital. First they did
49
wasn’t very easy. It was hard to see
blood tests to see if any results
people eat your favourite food and
would show but the results came
you keep thinking about fish and
back negative. So my consultant
chips all the time.
sent me for an endoscope and a
A community nurse was
colonoscopy. The results that
arranged to come in and see me
came back diagnosed me with
every week. The first
ulcerative colitis.
visit wasn’t very good
So my
because I wasn’t
consultant sent me
Once my levels are
for a barium meal.
correct, I will be able well. The community
nurse said I didn’t
No results came
to
leave
hospital.
look well at all. The
back so my
night before she
consultant started
came I had a bad flare up. Luckily
me on steroids in December 2006.
my dad had taken a picture and
These didn’t work. So in January my
shown it to the nurse.
consultant admitted me into
As soon as she saw the pictures
hospital and started me on steroid
she went straight to my consultant
drip for 3 days. It started to work
and explained to him and we had a
then I went home for a couple of
phone call from him the next day
days – later I got worse.
explaining that I shouldn’t be at
So a couple of days later I was
home, I should be in hospital. So he
admitted to hospital for observation.
admitted me into hospital again and
I had loads of tests such as blood
tried the steroid drip again and kept
tests, stool samples and lots more.
me on the diet still. This still didn’t
Then I was sent home again to see if
work. He could do no more. So he
the steroids would take effect or not.
referred me to Birmingham’s
Over the next couple of days I
Children hospital.
started to get worse. So I was
There I was seen by a different
admitted back to hospital again for
specialist who was more qualified to
observation. My consultant decided
give me more drugs. She did more
to try something. He decided to try
tests first. Then a week later she did
me on an Elemental diet to see if it
an endoscope and a colonoscopy
would work. The Elemental diet
50
again and the results diagnosed me
with ulcerative colitis.
So she started me on a new
medication. The medicine I was put
on was Azathiprine and
Cyclosporine. But at the present
time the hospital are trying to
control my levels. Once my levels are
correct, I will be able to leave
hospital.
I will know I will have to wait
and see for 3 months to see if my
new medication will work. I hope
that it works because at the
moment it is working.
51
Zainab
It all started at the age of 7 in the
year 2000, when I was at home and
found I had got piles. I used to suffer
from constipation from a very early
age, I used to fear going to the toilet
– it was like an enemy.
I would lie around all day, trying
not to make too much movement
otherwise it would trigger my bowels
off and I would have to go to the loo!!
Everybody around me knew when I
needed to go to the toilet because
I would make up excuses so I
wouldn’t have to move!
Thank god my constipation
disappeared – and then it was time
for my piles, and visiting the loo what
y
r
e
p
p
i
l
s
A
slope
52
seemed like 100 times a day!
In school I normally loved all the
subjects, but one day while we were
having a spelling test, I desperately
needed the loo. I could feel a horrible
sensation as is someone had lit a fire
in my stomach. The teacher told me
to go to the loo, but to be quick – I
sat on the toilet for ages as I went for
a poo. I had squeezed every drop of
energy from me, I felt drained and my
legs would wobble like jelly.
Eventually I went back to the
class and the teacher told me off as I
had spent half the afternoon in there.
I drastically lost weight in the
weeks that followed and went down
to two and half stones. My parents
were very concerned about my
health, and how it was affecting my
life. The GP referred me to St
George’s Hospital which admitted
me. Everyone sent me cards and lots
of presents, and also came to visit
me – that was the only thing that
cheered me up during this horrible
time.
The staff at the hospital were
confused, and did lots of tests on me
like x-rays, and a barium meal where
they made me drink this sickly
milkshake. St George’s then referred
me to the Royal Free Hospital which
I used to be a
petite healthy girl
and now I was fat
and unhealthy.
specialises in bowel problems – they
discovered I was bleeding through my
back passage. I got used to having
blood transfusions and drips going
into my veins. I had colonoscopy and
was finally diagnosed with border-line
Crohn’s/Ulcerative Colitis.
I stayed in hospital for ages,
occasionally being allowed home for
the day, it became my second home
and staff were like close friends. They
told mum I would have to be put on
steroids to push me that little further
towards getting better. They said
there would be side effects including
putting on a lot of weight. I was
already taking high doses of Pentasa
and Azathioprine.
I started school again after a few
months – it was great to see all my
friends again. I had missed a whole
term, but was still in the top groups.
I was now very fat from the steroids,
but I had my best friend there to keep
me happy.
53
After a few weeks thought
people were calling me names and
teasing me. My name at the time was
Lylah, and one day I found a letter in
my school tray – it said I was fat and
said other horrible things about me.
I was really upset and went home
crying – showing my mum the letter
– I was really upset and I started
looking in mirrors and insulting
myself – I used to be petite healthy
girl and now I was fat and unhealthy.
The writer of the note – a boy –
was caught and was in big trouble!
By my eighth birthday I changed my
name to Zainab, and was at last
starting to lose some of the excess
weight and become more like my
previous self.
I am still taking tablets but am
off steroids. I still have my ups and
downs but I am now 11 and at high
school where I am happy and have
lots of friends. Thank you to the Royal
Free for their love and support – I
would never have made it without
them. And to all those who suffer
from IBD – remember, there’s always
hope – and keep smiling!
54
On Infliximab, I
have the energy
of a 6 year old
Rachel
My name is Rachel. I am 11 years
old and have ulcerative colitis. My
earliest memory of my illness is
being in Ipswich Hospital in June
2006 in a lot of pain and being
given morphine.
I had been backwards and
forwards to the doctor many times
in the months before that with
stomach pains but it was put down
to stress from school tests or
friendship arguments but my mum
55
and dad knew there was more to it
than that.
One night I got up to go to the
toilet and there was a lot of blood, I
was so scared, that was when I was
taken to Ipswich hospital. My mum
stayed in hospital with me so I
I then became very upset
because I couldn’t do
things that other children
my age were doing as I
had no energy and had to
use the toilet so often.
wouldn’t get all upset and stressed
but I drove her mad because I
watched CBBC mostly all day and
every day when I wasn’t sent down
for tests. Surprisingly, it made me
forget about my tummy aches.
After a lot of different but
exciting tests I was transferred to
Norfolk and Norwich Hospital by
St John’s Ambulance. It was very
frightening because no one knew
what was wrong with me, even my
older brother, (who is a very strong
person) was I crying as I was put in
the ambulance.
56
At Norfolk and Norwich
hospital, after a lot of intelligent
thinking from the doctors, I was sent
down for a Colonoscopy, after that
they found out that I had Ulcerative
Colitis. No one knew what that was
at the time but my parents were
given leaflets about it.
Since then I have been on 20
medicines a day, these include:
Steroids, Asacol & Omeprazole.
I hated being on steroids as they
made me put on so much weight. I
went up to a size 16 and I’m only 11!
It was a high dose of 60mg
(12 tablets) for quite a long time so
I became steroid-dependent which
means whenever the doctor tried to
reduce the dose of my steroids all of
the symptoms came back again. I
then became very upset because
I couldn’t do things that other
children my age were doing as I had
no energy and had to use the toilet
so often.
Some of my friends and my
brother, Daniel still don’t understand
how I feel and why I can’t do much,
and that I will never get entirely
better.
I have been a lot better lately as
my doctor, Dr Briars at Bury St
Edmunds Hospital has gone through
all the palaver of getting this new
drug called Infliximab. I have this
every 6 weeks and it’s a 2 hour drip,
I don’t mind it as I makes me better,
then after the drip I have the energy
of a 6 year old! And I really annoy my
parents.
I have missed a lot of school
which I hate but my teacher says
that I have done really well this year
in my year 6 SATS tests which is
good as I go to high school this
September and I won’t be bottom of
the class like I thought I would be.
I spend a lot of time on the
CICRA website because on the
message boards there are other
children who have gone through the
same or even worse things that I
have and that helps me a lot.
I hope my story helps other
children realise that they are not
alone and as I say on the message
boards ‘Don’t worry about any tests,
they will be over in no time’.
57
Charlotte
My feed pump was
attached to a back_pack
My name is Charlotte and I am 12
years old. I was diagnosed with
Crohns disease in May 2007.
It all began in March last year;
I was on a year 6 residential trip to
Shropshire. At first it was great, my
friends and me did loads of cool
things like kayaking and abseiling!
Then I began to feel tired and
lethargic all the time. I put this down
to late nights, and those strenuous
activities. It got a lot worse; I noticed
a lot of funny, painful little blisters on
my tongue and cheeks I didn’t know
it then but they were mouth ulcers.
My stomach hurt and I went totally off
my food, all my friends said I looked
like a ghost I got so pale!!
I needed the loo a lot and it was
58
was shocked and cried heaps. I didn’t
always diarrhoea, of course I didn’t
understand what IBD was. I was
(and couldn’t!) tell anyone as it was
dreading the operations, as I had
just too embarrassing and I felt as if
never
had one before. That day I had
it was my fault.
to go home and do my maths SATs
When I got home I was really ill,
exam, as I didn’t want to be the only
I couldn’t even eat the fish and chips
one in school without
I’d been promised
their results.
when I got home. My
I
was
shocked
and
Everyone got
parents took me to
cried heaps. I didn’t worried as at this time
our GP and she took
I was a lot worse and
some samples but
understand what
was really losing a lot
she just said it was a
IBD was.
of weight. We went to
stomach bug and it
Lego land for the
would clear up by
weekend for a treat before the
itself.
scopes, but by the time we came
Of course when it didn’t clear up
home I was much worse. Once we
my mum and dad asked for me to
knew we were dealing with IBD, my
see a specialist to find out what was
dad did some research and found
wrong. The specialist took my very
Dr Briars at the West Suffolk Hospital
first blood test, which was horrible,
was the regional specialist and
and loads of samples. He did X-rays,
fortunately he was able to see me as
Ultrasound scans and more. One day
an emergency the next day.
we were told to go and see him. He
He agreed that I was very ill, but
told me straight that my
that I should have the planned
inflammatory levels were very high
endoscopes in Cambridge and then
and that it was almost certain that I
transfer to West Suffolk. He looked at
had IBD but he didn’t know if it was
me and told me he was almost
colitis or Crohns.
certain I had Crohns. He also told me
He booked me in to have to
he was going to put me on Modulen,
have a biopsy, endoscopy and a
a liquid diet for six weeks, I couldn’t
colonoscopy all at once that Thursday
eat or drink anything except water
to find out which disease I had,
and a certain type of gum. I found
Ulcerative Colitis or Crohns Disease. I
59
endoscopy in November and it
this hard and upsetting. I saw a
showed lots more inflammation. I
dietician who worked out a feed plan
was put on yet another tablet and it
for me.
was another case of wait and see.
I woke up from the operation
They still didn’t work and I got
with another naso gastric feeding
quite sad as I am still in relapse and
tube, a special fine tube that went up
have never had a real
my nose and down
remission.
Also I get a
into my tummy, (I’d
I don’t know what
bit down because of
had to have one
will
happen
in
the
my height, I’ve always
before the operation
future,
but
I
hope
been fairly skinny and
to take some
it
is
good.
I am very small for
medicine.) It wasn’t
my age.
nice and lots of
I am currently on 21 tablets a
people stared at me wherever I went.
day as I am currently on tablets
I began to feel a lot better and was
including steroids, Azothiaprine,
back at school. Nearly everyone was
Asacol, Calcium, Maxepa,
OK about the tube, once it had been
Omeprazole, Ferrous Sulphate and
explained. My mum had to come to
having blood tests and appointments
school at lunch to give me the feed
every fortnight. I am now facing the
and I had the pump attached to a
prospect of another colon/endoscopy
little backpack so I could carry on
and either ‘Infliximab’ or surgery.
feeding in lessons and once in
I am now in year 8 at high
assembly my pump started beeping!
school. Unfortunately my symptoms
Soon after I reintroduced food
are still active but worse. I have
I felt ill again. At this time my tube
managed to keep up with my
was removed. Dr Briars started me
schoolwork and have been chosen to
on some new tablets; they didn’t
study Latin as an extra subject. I had
work so he put me on steroids. They
to give up most of my clubs, but have
helped but made my face all puffy
managed to keep up with piano and
and I was really self-conscious. I had
I still go to trampolining.
just started High School, and was
I don’t know what will happen in
disappointed to have a relapse so
the future, but I hope it is good.
soon. I had a colonoscopy/
60
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Molly
Hi, I’m Molly and this is my story…
I know this may sound like a bit of an
exaggeration, but Crohn’s has pretty
much taken over my life. There were
so many things that I wanted to do
but couldn’t, but, hold on, I’m getting
way ahead of myself here, I’ll start
from the beginning…
I first started to feel funny and
have some symptoms around early
2003, but it was in the summer of
2003 that things really started
61
happening. Every Friday, my family
and other families would go to a
local pub for dinner, and I would get
agonising tummy ache every time I
ate my starter, but because I always
had the same starter (garlic bread),
a friend of the family said I had
similar symptoms to her husband
who had Coeliac disease, which,
incase you don’t know, is being
allergic to gluten, and gluten is
found in most bakery and cereal
products. This was a real blow for
me, because, like any other 8 year
old at the time, I loved cakes and
biscuits!
Cutting out gluten turned out to
be pretty hard, as back then, there
were hardly any products that were
free from gluten, but now, there is
so much more!
We saw a paediatrician and
discussed what was wrong with me
because the gluten free diet had
made no change to the symptoms,
he said that it was not Coeliac
disease but he suspected it may
be IBD, he then referred me to a
consultant at the John Radcliffe
hospital in Oxford. However, it was
September/October time before
we had an appointment with him.
He booked me in for an
62
endoscopy and a colonoscopy (this
is when they put cameras down your
throat and up your rear but luckily,
I was asleep) at the hospital on the
16th of October, which was the day
after my birthday. I had to flush out
my bowel by not eating for three
days before (and yes, that means my
birthday too!) and putting laxatives
in my drinks-it was disgusting!
The results of the tests taken
on the samples they took whilst they
did the endoscopy and colonoscopy
were positive for IBD. It turned out
I had it in 2 places: a bit in my large
intestine and a bit in my small
intestine. I stayed in hospital for a
week or so after the procedure. I
was on a pump of steroids that went
through a canula in my hand, but
we don’t need to go into that. Whilst
I was in hospital I had my party,
luckily I was allowed out for the
night, so it wasn’t all bad.
After what felt like forever but
was in fact only a week, I was
discharged from hospital and put on
sulphasalazine and ferrous sulphate
(iron). Things somewhat settled
down after that, but I still had tummy
aches and all the other symptoms
like weight loss, mouth ulcers etc.
The thing that most people forget
I remember being
scared to sneeze in
case the nasogastric
tube came out but
it was really secure
and nothing to
worry about.
about Crohns is that it isn’t a
constant thing, it comes and goes,
but back then, I thought it would
never go away.
Let’s skip to 2007, and after
2 rounds of steroids, my health was
still going up and down. By Easter
things were at an all time low, and
I found out that I hadn’t grown in 12
months, so, my consultants made a
radical decision to give my digestive
system a rest and not eat for six
weeks. I was speechless, I thought,
I’ll die if I don’t eat! But he quickly
explained that I would be fed
through a tube with a liquid diet that
would give my body all the nutrients
it needed without the need for my
intestines to do any work.
The next day I went back to the
hospital to have a nasal-gastric (NG)
tube put in – this is a thin tube that
goes up your nose, down your throat
and into your stomach. I was really
really scared but the nurses were
really nice, they waited until I was
ready before they inserted the tube,
I had to keep swallowing water to
help the tube to go down because
my throat was rejecting it and it was
hard to swallow but once it was in it
was fine, it felt a bit funny for a
couple of days until I got used to it.
I remember being scared to sneeze
in case the nasogastric tube came
out but it was really secure and
nothing to worry about.
I had the choice of how often I
wanted the tube to be passed: every
night before feeding or just the once,
I decided that just the once was
traumatic enough for me. I also had
the choice of when I could feed
through the tube, and I decided at
night would be best.
The tube really did make me
feel fantastic, though, and gave me
my energy back; I would get up early
and go out for a bike ride, whereas if
I hadn’t had the tube, I would have
just had long lie-ins. Not eating
meant I had more time in the day
and as I felt much better I was more
active and did more things with my
friends. But what really hit me about
63
see my consultant yet again, he said
having the tube was when we went
that I needed surgery to take the
on holiday, everyone was staring and
inflamed part out – even though we
talking about me, but I think I would
knew
that it was a possibility it was
have much preferred it if people
still a massive shock for all of us,
would have just asked me or my
particularly as we
parents about it,
were due to go on
rather than make
I
had
no
energy,
no
holiday to Spain 10
me feel really selfdays later! We had to
conscious.
appetite and I was
cancel the holiday as
Two or three
losing weight.
there was a chance
months after the
that I may have
tube, my symptoms
complications whilst I was away. We
came back: I had no energy, no
saw the surgeon a few days later
appetite and I was losing weight. In
who dropped another bombshell!
January my consultant then put me
I may have to have a Stoma bag
on a weaker steroid and
fitted, but they wouldn’t know until
azathioprine, the steroid didn’t really
the operation. We saw the specialist
do anything and the azathioprine
nurses who reassured me that I
meant I had to have blood tests all
would
soon get used to it and they
the time – I was really bad at having
gave me loads of information to read
blood tests but with having them so
and a DVD to watch and offered to
often, I really improved. I would say
put me in touch with other people of
I’m the Queen of Blood Tests now!
a similar age who had one fitted,
There was still no improvement
this was comforting as it is really
with regards to symptoms, so in April
easy to think that you are the only
I went to have a barium x-ray, (this is
one to go through it.
where you have to drink a chalky
Three weeks passed quickly
liquid that passes through you
and before I knew it, it was time to
digestive system and can be seen
go into hospital. I was petrified. I
on an x-ray). This revealed that I had
went in the night before the day of
an extreme narrowing in my large
the surgery, and my mum stayed
intestine.
with me that night. The surgeon
When my parents and I went to
64
came to see us and explained how
the type of the surgery I was having
(keyhole) worked, he explained that
he was going to make several small
cuts in my tummy that you would
hardly be able to see afterwards,
this was a relief as I didn’t want a
big scar.
The surgery went really well
and although they had to take away
more than they had anticipated I
had not needed to have a bag fitted
(Yay!), I obviously had some pain
afterwards, but I was able to use a
button to give myself a dose of
morphine which helped to control
the pain. I was in my own room
afterwards and for the first couple of
days I was just resting, but on about
the third day I was still very weak
and my blood count was very low so
I had a blood transfusion, straight
away my Mum said that my colour
came back and I looked better than I
had for ages. The next day I saw a
physiotherapist, who told me to go
walking up and down the ward with
my mum. Apparently I was bent over
like Mrs Overall at first (!), but
eventually, by the end of the week,
I straightened out.
I was so happy to go home – it
was the weekend so I had a couple
of visitors which was nice. I felt OK
but little did I know what was around
the corner, on the second night back
home, my temperature spiked again
– it had been happening almost
every night at hospital – so my mum
called the hospital the next day, they
told us to come back in and did
some ultrasound scans and by
Tuesday I was back in hospital.
It turns out I had a mild
infection in a collection of fluid that
had leaked during the operation.
They put me on antibiotics through a
canula to see if it would clear but if it
didn’t work they were going to have
to put me to sleep and take the fluid
out fortunately the antibiotics
worked and the fluid seemed to
have been absorbed. I was
discharged a week after going in the
second time.
Now I’m fully recovered from
the surgery and feeling better than
ever, I actually don’t remember
feeling this well!
It sure has been a journey for
me, and I really hope to continue
feeling this good for years to come.
I hope you enjoyed reading my story
as much as I enjoyed writing it!
65
d
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e
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I was
s
a
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a
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i
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y
m
Charlotte
My name is Charlotte and I am 13
years old. I started to become unwell
around September 2007, I was
getting stomach pains and going to
the toilet more often. I was going off
my food (which isn’t like me) and
losing weight.
My mum took me to the doctors
and he referred me to the hospital.
We had to wait a while for an
appointment and during that time
I just got worse. In the end my mum
took me to A&E in desperation and
they did a blood test and a urine
sample which is so gross! They
decided in the end that I probably
just had piles.
Eventually we had our
appointment with Dr Hinds at Kings
66
sick every time I tried to swallow it.
College Hospital who said I would
By this time I was feeling really
have to be booked in to have a
fragile and scared about the next day
colonoscopy to see what was going
and upset because I wanted to be
on. We had an appointment booked
with my friends at school on my
or 6th December but I kept on getting
birthday and not at hospital.
worse and worse until by the 19th
My mum stayed
December, which
at
the
hospital with
was the day before
me and in the
my 13th birthday,
It wasn’t until that
morning my step-dad
I was so ill and in so
evening
that
I
fully
and nan came too
much pain and was
understood
what
with some birthday
puking up green
having Ulcerative
cards and they gave
stuff (yuk) that my
me a big 13 badge
mum rang the
Colitis would mean.
which I wore when
hospital and they
I
was taken from Toni
told her to bring me
& Guy ward down into Day Surgery.
in right away.
Once there I was wheeled into a little
When we got there they
room with lots of nurses and Dr Hinds
admitted me right away and told me
was
there and I don’t remember
I would have to stay in overnight and
anything else because I was put to
have a colonoscopy and endoscopy
sleep.
in the morning. I wasn’t happy
When I woke up I remember my
because it was my birthday in the
mouth was really dry and I was
morning. That night I had to have a
worried by the little bit of blood on my
drip put in which was horrible
gown but mum said it was fine and I
because I’m so scared of needles,
got up and walked around slowly. The
and to make it worse they couldn’t
nurses were really nice and bought
find a vein and had to keep trying.
me a magazine and a birthday card
Eventually they did and I didn’t like
signed by Dr Hinds and Lisa (the
it when the fluid starts going in
really nice nurse) and all at Day
because it stings and feels weird. I
Surgery.
was also given two types of medicine
Dr Hinds came and spoke to me
to clear out my bowels but kept being
67
cheered up when I got a get well soon
and my family and told me that I had
card from my classmates.
Ulcerative Colitis but I didn’t know
Taking the medication was a
what that meant. He also gave me a
challenge.
I couldn’t swallow tablets
photo of my bowel which was gross!
no matter how hard I tried and had to
He gave me the CICRA website
change the steroids into dissolvable
address and said that would help me
ones as I had to take 8 a day and the
to understand what condition I had.
Mesalazine capsules
I was given a huge
into granules which I
bag of medicine and
just swallow and is so
I remember thinking
It’s not easy to talk
much easier. I had to
‘wow’, that is so
about with my
take the steroids for
much!
friends
and
can
be
a
3 months and I hated
I was able to go
bit
embarrassing
but
them because they
home later that day,
I
have
made
some
made me starving all
I looked and felt very
the time and gave
tired and worn out
friends through
me a fat face and I
but determined to
CICRA message
put on weight which
smile because it was
boards.
upset me.
my birthday. I don’t
They did make
remember very much
me feel better though and I had to
about the day apart from blowing out
cut them down gradually and I was
my candles and opening my
really looking forward to being able to
presents. It wasn’t until that evening
come off them but as the dose got
that I fully understood what having
lower my symptoms started to come
Ulcerative Colitis would mean. I
back again and by the time I was
thought I would take some medicine
down to 2 tablets a day I woke up one
and get better and back to normal
morning in agony with stomach pains
but mum explained to me that I
and was puking up green stuff again.
would have this for life and have to
I was in more pain than I’d ever
take medicine every day. It started to
known and mum had to call an
sink in and I cried because I felt that
ambulance, I was rushed to hospital
I would never be normal again. I had
with the siren going on the
the rest of the week off school but
68
ambulance (which my little brother
thought was great as mum had to
bring him too) and was given strong
painkillers, put back on a drip (worse
luck) and admitted again and given
IV steroids which started working very
quickly. I was upset because I was
put back on 8 steriods a day again
and felt this would never end.
Since then I have cut down the
steroids until finally in April I took the
last one and have thankfully been ok.
I haven’t had a flare-up since then,
apart from a few tummy aches. I get
a lot of pain in my joints and feel very
tired a lot of the time but have learnt
to live with that. I carry on life
normally and do the same things as
everyone else. I know that the
disease can flare-up at any time and
sometimes it gets me down and I
have felt very lonely at times and
thought ‘why me’?
It’s not east to talk about with
my friends and can be a bit
embarrassing but I have made some
friends through CICRA message
boards and enjoyed going to the
CICRA day at Great Ormond Street
Hospital where I met others in the
same boat and felt inspired listening
to their stories. It is scary finding out
that you have a life-long disease but
for me I figure it will just have to fit in
around my life and the other way
round.
69
Dionne
It all started two and a half years
ago. I had lost a lot of weight, lost
my appetite, I had diarrhea, and I
also had stomach pains. I was feeling
really ill. I went to the GP
and got my bloods taken.
I was given something to replace
the salts in my body that were being
lost, but of course that did not help
my symptoms. I went back to the GP
and she referred me to a psychiatrist
three or four times and he thought
I was bulimic or anorexic. When the
psychiatrist left a new one came
along and they referred me to my
local hospital.
At the hospital they tried to feed
me up, but I was still losing even
I've got Crohn's
_ I've not got anorexia
70
more weight. The doctor at the
hospital decided that there must be
something wrong with my gut, so he
sent me to have a barium meal.
When the x-ray films came back from
the barium meal, the doctor looked
at them and then sent us to Great
Ormond Street Hospital for them to
see the films.
Once at Great Ormond Street,
the doctors there could see how ill I
was, so I was sent for an emergency
endoscopy – the endoscopy showed
that I had Crohn’s disease.
Straight away I was put on an
element diet for a period of eight
weeks. I could not stand the taste of
the drink, so they put a nasal gastric
tube in. During the eight-week period
I was able to go back to school, my
friends were really good about the
tube, and they soon got used to it.
Finally, when I was reintroduced
back to food, I was still feeling ill, so
they started me on steroids. The
steroids did not work, so I went on a
trial drug, but this did not work either.
Then they tried another drug called
‘Infliximab’, which worked for a little
while but then stopped working. I was
also put onto other drugs like
Azathioprine, which I am still taking
now. During the time the drugs
worked, I was able to take my feeding
tube out, and went for a photo shot
for my birthday, which I really
enjoyed. I have included one of the
pictures here with my story.
We were running out of drug
treatments to try and I hadn’t started
puberty yet. There was one more
option open to me – an operation. So
it all went ahead, I had the operation
which went well. They took away all of
my large bowel and a bit of my small
one too. I am now left with a
permanent ileostomy. I also got my
tube back in to provide me with extra
nutrients. The ileostomy was really
strange at first, but now I am getting
used to it.
Now, six months after the
operation, I started to experience
some pain, so I had to have yet
another endoscopy. They found that
There was one
more option open
to me
– an operation.
71
there were some small ulcers in my
small intestine. I have been put back
onto ‘Infliximab’, which I will stay on
until I have passed through puberty.
I still have my nasal gastric tube in
and am putting on weight slowly.
Hopefully this will treat my Crohn’s
once and for all.
72
Crohn’s in Childhood
Research Association
CICRA (Crohn’s in Childhood Research Association) is dedicated to creating
a wider understanding of Crohn’s Disease and Ulcerative Colitis, particularly
as it affects children and young adults, and to raise funds to support
approved medical research aimed at finding more effective treatments
and an eventual cure.
In 1982 CICRA set up the first Paediatric Gastroenterology Laboratory in the
UK at St. Bartholomew’s Research Centre in London – now situated at the
Royal London Hospital Whitechapel. This Laboratory, and other centres
CICRA has helped finance such as the Royal Free Paediatric
Gastroenterology Laboratory in Hampstead, London, are now world
recognised for their excellence in paediatric gastroenterological research.
CICRA sponsors Research Fellowships and PhD studentships and funds
approved research projects in major gastroenterological centres nationwide.
CICRA publishes information leaflets and other literature on all aspects of
inflammatory bowel disease, particularly as it affects children and
adolescents. It actively promotes a wider understanding of this condition
and treatment currently available.
CICRA offers membership to all ages interested in furthering the aims of the
charity and making contact with others in a similar situation.
Kindly sponsored by
CICRA
Crohns in Childhood Research Association
Parkgate House, 356 West Barnes Lane
Motspur Park, Surrey KT3 6NB
Tel: 020 8949 6209
Email: support@cicra.org
www.cicra.org
Registered charity no. 278212