Rosie-Anne Elizabeth Herbert was born weighing a healthy 6lb
9oz on the 30th of April 1989, here she tells us of her ongoing
battle with the rare condition Gastro Intestinal Pseudo Obstruction
My name is Rosie, I was seventeen years old when I started
to write this. I had been ill since I was six, with no real diagnosis
until I was eleven.
All my problems started after I was diagnosed with an infection in my bowel
(aka Camphylobacter) when I was six. I got dehydrated and was admitted to my
local hospital, (Eastbourne District General Hospital or EDGH) for dehydration
and blood tests. I was discharged two days later, thinking nothing more of it.
Life carried on as normal for the Herbert family, with me going to
school and enjoying various activities like any other girl of my age,
however this was soon set to change.
Just a few weeks after my initial hospital admission I started vomiting
again, and was rushed back to hospital. I had another set of blood tests, but
was soon discharged, with no more of an explanation as to why I was being sick
than: “it‘s just one of those things.”
However the sickness continued to occur and I was frequently admitted to
hospital with dehydration. At this point doctors still didn't know what was
causing these episodes but soon realised there was a pattern to my vomiting.”
Nearly a year after my first hospital admission, my parents began
to worry further as her symptoms began to worsen with no real explanation.
After a year of diagnostic tests, which all came back negative, doctors
were still baffled as to what was causing these awful symptoms, which now
included, continuous vomiting every two weeks for two days, stomach pains,
headaches and reflux. Different doctors had different answers, varying from;
constipation or an appendicitis to anorexia and bulimia.
Over the next couple of years I was admitted to hospital countless times.
As the time went on, the pattern to my vomiting became clearer and more
noticeable. I was sick every Monday for four days every two weeks.
Unfortunately this just lead the medical profession to believe my problems were
all psychological and related to being bullied.
Admittedly by this time I‘d missed weeks of school and was being very
badly bullied but I knew there was something physically wrong. Doctors and
nurses alike continuously tried to get me to “admit” to them that I was making
myself sick so I could get out of going to school. I was seven years
old!! I was referred to a number of psychologists who all came to the
same conclusion, and after every session wrote the same thing in the report
"Despite Rosie being bullied and having to cope with this illness, she is
a happy, bubbly girl who has no mental health issues." Even after this
most of the doctors and nurses were still adamant that it was in my head.
As time went on my condition continued to deteriorate with the vomiting
becoming more frequent and projectile. By this stage, at its worst the vomiting
episodes lasted ten days. I could quite literally flood the bathroom with vomit
and be sick up to forty times a day.
By now I had been referred to Brighton Children’s Hospital for more invasive
tests as my symptoms were worsening still, with no explanation and no
medication helping to ease the constant pain and suffering. It was thought that
if anything was seriously wrong it was more likely to show up with these tests
than with routine blood tests, that were regularly carried out with every
hospital admission.
Rosie endured many invasive procedures in a bid to determine what was causing
her suffering and daily symptoms, which by now included; Acid reflux, stomach
cramps, heartburn, constipation and vomiting.
next
The following investigations were carried out:
Endoscopies: An Endoscopy is a
test that enables doctors to looks inside the body. The endoscope is a long
flexible tube that you swallow. It has a camera and light inside it which
allows a clear view of the area that needs to be examined.
Biopsy: Again a tube is passed down your throat, this time with a
small hook on the end to take small samples if required.
PH Study: A fine tube passed through your nose into the gullet to
monitor your stomach acid.
Milk Tests: For this test you are asked to drink a milky drink
and then lay still so a type of scan can be done, this follows the milk through
the digestive tract to see how long it takes to pass and if there is any
reflux.
“These procedures were very stressful, as I’m sure you can imagine. They left
me in limbo and as strange as it may sound, I began to hope that these tests
would show a physical problem, at least then we would have answers and I could
then be treated effectively, if not cured and live a pain free life… be a child
again.”
To my dismay, all these investigations came back negative, meaning there
was still no explanation as to why I was having these symptoms, and we were no
closer to a diagnosis.
However, looking back, I realise something that certainly, logically,
could have led to a much earlier diagnosis.
Shortly after my Endoscopy in Brighton , the anaesthetist and surgeon
came to see my father. I have this awful memory of them arguing with my dad,
insisting I had eaten before the procedure. This couldn’t have been further
from the truth, I was starved for twelve hours pending the procedure, just as I
had been asked to do.
This indicates delayed gastric emptying, which is one of the most common
problems in people who suffer with Pseudo-Obstruction.
My condition remained the same for a short period, with countless
admissions to hospital where she endured endless blood tests, and x-rays.
Unfortunately as these basic diagnostic tests continued to show no
abnormalities, I became the topic of conversation amongst nursing staff and
doctors with very few positive comments exchanged.
Everyone at the hospital still insisted the problem was psychological,
it was impossible for me to persuade them otherwise. I had so much to contend
with at such a young age, it felt like I had the weight of the world on my
shoulders.
With the bullying at school becoming more severe, it wasn’t only nasty
comments that I dealt with every day but physical violence, just because I was
“different.”
When the nurses at the hospital became more aware of the severity of the
bullying, it just prompted more accusations and they insisted I saw my
psychiatrist more frequently. They were more adamant than ever that I was
making myself sick in a bid to escape the bullies.”
By the time I had reached eleven years old, my parents had become so
desperate they trawled the internet for advice and answers. They eventually
found a website which catered for people who were suffering from unexplained
vomiting that occurred in patterns. The symptoms listed on this site matched
mine perfectly. The name of the condition this website was dedicated to is
Cyclical Vomiting Syndrome.
My parents soon produced all the information they felt relevant to my
consultant. He almost immediately agreed that there was a strong possibility I
was suffering with this condition and it was decided, there and then that I
would be referred to a Consultant Paediatric Gastroenterologist at St Bart's
Hospital in London . This is where I met the man I believe saved my life, Dr
Nigel Meadows.
My parents, Dr Meadows and I discussed everything, from my
symptoms and negative test results to bullying and the way I had been treated
by other doctors in the past. He soon told us what we had known all along: I
did have a physical health problem…I was suffering from Cyclical Vomiting
Syndrome.
After the diagnosis I thought everything would improve, school would
become easier and people would finally believe and understand I was physically
ill, and eventually I would grow out of this, and be a “normal” teenager. How
wrong could I have been? Things went from bad to worse; no one at my local
hospital had heard of CVS so that of course meant that they didn't know how to
treat the condition. As it had never been heard of, people still believed it
was all psychological. I was still hardly at school so people had an excuse to
make up the most obscure rumours.
By the time I started senior school everyone had already developed their own
views on my life.
I was ill for the
first week of the first term of senior school, so when I did attend it
soon became apparent that the rumours were undeniably awful. According to the
bullies, I had already been pregnant 4 times and had had two abortions. On
many occasions I was asked if I had cancer.
The next year was totally awful, I had no friends, was getting sicker and was
still being bullied. I was being admitted to hospital more frequently, was
having more symptoms I was in constant agony and began to hate the life I was
living.
At my follow-up appointment with Gastroenterologist Doctor Nigel
Meadows I told him how my symptoms were continuing to worsen and
how I would now vomit for hours, if not days on end.The once recognisable,
highly predictable pattern of vomiting episodes was
becoming wildly erratic...
I had developed severe migraines, the reflux was worse and when I was
vomiting it was lasting for much longer periods of time. I also had to tell him
that I wasn’t receiving the correct treatment at my local hospital ( Eastbourne
) and that nurses still spoke about me as if I wasn't there and that everyone
still thought my conditon was psychological. He was upset by this and said he
would get in touch with the hospital and give them a protocol of treatment to
follow.
When I was 12, Dr Meadows suggested that past investigations
should be repeated, and even more invasive procedures should be carried out, in
a bid to determine what was causing the change in symptoms. My family and
I obviously agreed, hoping this would help them give me the
correct treatment that I so desperately needed.
I continued to deteriorate. My veins were now collapsing from needing
constant IV access; at one point I had fourteen canulas in nine days. Another
time I had one doctor attempted to canulate me thirteen times without stopping
or without any success, but still determined to draw blood by which point
nurses were literally begging him to stop, yet he still refused, by which
time I was so distressed, I ran as far away from him as I could, but he soon
found me, and told me he would now attempt to canulate me again…in my feet. And
he did, because if I had refused treatment, he would taken it as evidence of
self-harm and I would have been referred to a psychiatric unit.
next
After this traumatic experience we began to research other options,
and soon discovered that a Hickman line, was common practice in those who
needed continuous intravenous drugs. We discussed having a Hickman line
inserted at my next appointment at The Royal London and it was
agreed that it was for the best. We were told of all the risks this would
carry and we had rigorous training in using and keeping the line clean before I
was even allowed out of the hospital.
“Soon I was admitted for the next lot of investigations, I was relieved but not
surprisingly, nervous. This was when I met my great friend, Kayleigh, when I
found out that she had the same symptoms as me - it was a relief that I wasn't
the only one, and I empathised, but I felt so sad that someone else was
suffering as much as I was. I knew people with CVS but my symptoms were now so
much more severe than when I was diagnosed that I was doubting that I even had
the condition or if I had CVS and another condition on top. I was so confused.”
I had many of the previous tests repeated and also had
X-rays
Barium Meals / Barium Swallows
Manometries of the Oesophagus
Manometries of the Small Bowel
Ultrasound Scans
To my dismay, there were no changes in the results, no new findings, thus, yet
again no explanation to my ever-worsening, ever-increasing symptoms.
Unbelievably at this stage I wasn't losing any weight and looked
relatively well, but this in itself caused further problems: with me looking so
healthy, it was even harder to believe that I was ill at all.
Although I was glad that I looked healthy, and I could easily hide
behind a pretend smile, it made matters worse, it was so much easier for people
to believe I was making everything up.
As the bullies continued to punch, kick and threaten me on the rare
occasions I was able to attend school, it soon became too much, and my parents
decided it was best to start afresh in a new school.
At the beginning of year eight the bullying became so out of control, I left
and began to attend a new school. This was decided after someone I didn’t even
know started to threaten me, he followed me out of the school at home time, and
verbally abused me, calling me all sorts of names, and even involving my
family, when he ran out of insults, he spat all over me.
My father reported the incident, and even showed my Head of Year and
Head Teacher my phlegm-stained school uniform, but they seemed totally unable
to help.
When I finally managed to get a place at another school my happiness at
the prospect of a new start was short lived. It turned out the bullies from the
previous school knew people there and had told them all about me. By this point
my health was rapidly deteriorating and I spent more time in hospital than out,
I wanted to give up but I was determined I wouldn't let it beat me. I was
always exhausted, I just felt ill all the time, I went from being this bubbly,
outgoing girl who was never afraid to speak her mind, to a quiet mouse, who
totally lacked self-esteem and self-confidence.
By this time I was so poorly, school was becoming somewhat a distant
memory. My symptoms were now so bad that she was lucky to attend school once a
month. “I was now being sick up to sixty times a day, I was in unbearable pain,
with stomach cramps, reflux and migraines. I choked on food, I couldn’t sleep,
I was unable to establish whether I felt full or hungry, and I began to get
distended after eating. By this time I had had three Hickman lines and the most
recent one was now infected.
Now thirteen years old I was once again being admitted to hospital for
further investigation. This time there was a slight change in one of the tests,
but nothing significant enough to explain these dramatic changes in her
symptoms.
Dr Meadows diagnosed a “floppy oesophagus” and made some suggestions as
means of treatment, one of which was Botox to stiffen the oesophagus and the
other option was surgery but this was not really a possibility as the
tightening would stop me from being sick. Although this sounds like a good
thing, I would actually still feel the need to vomit and as the retching was so
powerful it would cause me to perforate my stomach.
THE COWARDLY NEIGHBOUR
At one point during my time at school the bullies had really caught me and I
had been quite badly beaten. I desperately called out to a passing neighbour
for help, but she turned her back on me in my need and distress. I had
been punched, had had my head repeatedly beaten against a wall, and one of my
attackers had tried to strangle me. I was too frightened to get on the bus to
go home. Terrified and alone, I began to vomit. I was so scared at this point,
I thought these people were following me, I was very dizzy from having my head
beaten against the wall, I called upon a neighbour for help but she just
refused. I think she was scared.
To this day I am convinced these brutal attacks happened because of my
illness. If those bullies had given me a chance and got to know me, the illness
wouldn't matter, I just think now that they were too immature to handle
anything different and new to them. The worst bit about it was our neighbour
who I begged to give me a lift. She had a good idea of how ill I was and how
badly I had been hurt, but she just put her foot down and drove off because she
didn't want to get involved. How on Earth can anyone ever blame kids when there
are parents like that?
UNBEARABLE PAIN
By the middle of year eight I was unable to attend school at all. I was often
simply too tired to function, was continuously vomiting and had unbearable
pain.
Sadly I had now grown used to being victimised and verbally abused. I
wasn't leaving school because of the bullies, they were not worth it and I
didn't want them to think they had won, because they hadn't. The illness was a
tougher nut to crack than they were and the pain they inflicted was nothing
compared to the excruciating agony that I had to put up with everyday anyway. I
was just took sick to attend.
Unfortunately none of the pupils understood my condition and neither did
my teachers. Even when I produced a doctor’s letter to excuse me from classes
whenever I felt the need to vomit, they refused to let me out, with obvious
consequences that cannot have endeared me to my fellow students. Or the staff.
My parents were soon getting accusatory letters from teachers saying
"Why make her come to school when she is clearly not well enough??"
My mum would reply with, "Because this is everyday life for her, she is
always ill, and even on a good day she is sick at least once. She needs to be
treated the same as everyone else. She needs an education."
The school tried to set me attendance targets, in the belief that I was working
some sort of glorified skive. When in exasperation my father explained to them
in great detail that I needed to be excused from classes to go and vomit,
that I had to carry syringes and needles with me at all times, as well as my
medication and an emergency kit in case my Hickman line fell out, it soon
became apparent to us that the school couldn’t cope with that much
responsibility and that attending school was therefore no longer an option. And
just perhaps we as a family had been clinging onto it for too long anyway, in
an attempt to keep some normality in our lives.
THE NEW FRONT LINE
For me the next battle started here. I still needed to learn, needed an
education, and so my parents applied for home tutoring for me. It was a total
nightmare as my condition wasn't recognised. We battled for years; I had one
hour a week tuition - that was it! And the tutor was useless, all she did was
talk and discuss her own issues. We rarely did any work, but my education was
everything to me, my one remaining link to normality, so I refused to give up.
The initial fight for home education continued for a year and then the
tuition finally increased to two hours a week. Then, at the end of school year
nine, after a long stressful battle her tuition was increased again to a whole
five hours a week. Still not a lot, but this time I really had a fantastic
tutor.
I knew we would get on as soon as I met her. Finally I was statemented
too, which meant I could have extra things to help with my education. By year
10 I discovered that I should be receiving at least ten hours a week as I was
starting my GCSE course work. It was discussed and debated by the authorities,
I attended lots of meetings and remained determined and fought for my rights. I
wouldn’t let this go; it meant so much to me to get a good education. But they
wouldn't budge; they said I had enough, that I didn't need anymore. The reason
I fought so hard was because - and this might sound silly - all the
people my age were doing this, getting an education. I needed to, it was my
dream to help others; it was my only connection with normal teenage life.
I was given a choice of subjects to do for my GCSEs; ICT, Humanities,
Food Tech, Child Development, Maths and English. I wanted to do far more than
this! I wanted to achieve so much! My dream was to take Double Science, Drama
& Music, Food Tech and Child Development, Maths, and English. However this
would have been near impossible with my frequent spells in hospital and the
constant need for medication that affected my ability to concentrate and
to retain information. I always felt drowsy and drained of energy but I
completed 5 GCSEs, doing nearly all the course work and all the revision in
hospital. I even took my first exam, ICT, in the Royal London Hospital .
next
By the time I was fifteen, my health had taken a real turn for the
worse. I lost three stones in as many months and hadn't had my bowels open for
three weeks. I was vomiting copiously at least twice a day and at the most,
sixty times a day. I was frequently bringing up undigested food eaten three or
four days previously. I had completely lost my appetite and had no energy. My
stomach was seriously distended, so much so that people were even stopping and
asking, "When's it due?"
Two months before my outpatient appointment, all the tests had been repeated
yet again, so when Dr Meadows called us to a side room, different to the one we
usually used, I knew something more serious was wrong. He sat us all down (me,
my mum and my dad), and gently told us that he had the results from the tests
and that it wasn't very promising. He told us that there had been a dramatic
change and that the explanation for the symptoms worsening, the slow gastric
emptying and weight loss was due to a condition known as Gastro Intestinal
Pseudo Obstruction, also called Chronic Intestinal Pseudo-Obstruction (or
simply "pseudo"). I burst into tears, I sobbed quietly as he
explained the rest of the news. It was all a blur from then on, all I could
think about was the people I knew with pseudo, all the people who were
seriously ill. The people who had died from it and all the complications it
brings - I just couldn't take it in.
As this was slowly sinking in, we were dealt another blow. Dr Meadows
admitted that he was seriously worried about my weight loss and told us that I
would now need a surgical GJ tube (Gastro Jejunostomy), a tube that is
surgically placed into the stomach and the jejunum, (a part of the bowel). i
would use the two ports - one, the bit in my stomach to drain acid and the
other, sited in the bowel, would be used to feed me. I would also undergo a
full thickness biopsy, to determine which type of pseudo-obstruction I had.
I couldn't stop crying, but of course I agreed as I wanted to get
better. I cancelled my holiday with the family and was rushed to hospital to
find the surgeon was away. The alternative was to have an NJ tube (a tube
through the nose and jejunum). After this tube was put down though, I vomited
so much it just came back out. I eventually had the GJ tube inserted but I had
many problems with it, including it getting dislodged, falling out, having it
reinserted five times, infection, and it coiling into the stomach.”
After seven months of complete agony my feeding tube was removed. By
this time the tube also caused me to go into complete obstruction. At one point
I was even vomiting faecal matter and wasn't able to eat or open my bowels.
I was in hospital for eight weeks and was put on TPN (total parenteral
nutrition, ie intravenous feeding) for three weeks. Since then I have been
admitted to hospital on many occasions with partial obstruction, where some of
the digestive system works but other parts don't. Long hospital stays are very
boring and I have had conflicts with the doctors, but I also get to meet lots
of interesting people.
Most of my friends are fellow patients. I hate to see them suffer. They
are all so courageous, so brave and intelligent. I can't help but think why?
Bravery and courage doesn't come from one person, we are all there to support
each other. I remember always my three brave angels who couldn't overcome the
condition, who are so sadly missed and who were so precious that they will
never be forgotten. If I hadn't been ill I would never have met these fantastic
people.
Since that horrible day when I was diagnosed with this condition, my
journey with this illness has led me down many different paths, some good and
some bad, but I will remember them all because they have made my life what it
is today. I have seen people I love dearly die before my eyes, I have seen my
friends get sicker, I have got sicker. I have seen the worry on my family's
faces and I have experienced things most people will fortunately never have to
experience. You have to use these experiences, don't dwell on them, make good
out of bad.
Today, I am stable, I live in a flat with my gorgeous long-term
boyfriend and my beautiful little boy….Yes you read that right, I managed to
have a baby. You see anything is possible, you just have to believe, have hope.
When I was diagnosed, I thought my life was over, but it wasn’t it was just
beginning. It hasn’t been easy, it’s been one long battle, but now I have all I
have ever dreamed of. I even plan to train as a nurse one day!
This illness isn't meant to stop you doing what you love, it isn't a
curse. It may feel like it at times, but you will learn from it and experience
so much. I have one simple message…. “NEVER GIVE UP!!!!”
Rosie-Anne Elizabeth Herbert was born weighing a healthy 6lb
9oz on the 30th of April 1989, here she tells us of her ongoing
battle with the rare condition Gastro Intestinal Pseudo Obstruction
.
My name is Rosie, I was seventeen years old when I started
to write this. I had been ill since I was six, with no real diagnosis
until I was eleven.
All my problems started after I was diagnosed with an infection in my bowel
(aka Camphylobacter) when I was six. I got dehydrated and was admitted to my
local hospital, (Eastbourne District General Hospital or EDGH) for dehydration
and blood tests. I was discharged two days later, thinking nothing more of it.
Life carried on as normal for the Herbert family, with me going to
school and enjoying various activities like any other girl of my age,
however this was soon set to change.
Just a few weeks after my initial hospital admission I started vomiting
again, and was rushed back to hospital. I had another set of blood tests, but
was soon discharged, with no more of an explanation as to why I was being sick
than: “it‘s just one of those things.”
However the sickness continued to occur and I was frequently admitted to
hospital with dehydration. At this point doctors still didn't know what was
causing these episodes but soon realised there was a pattern to my vomiting.”
Nearly a year after my first hospital admission, my parents began
to worry further as her symptoms began to worsen with no real explanation.
After a year of diagnostic tests, which all came back negative, doctors
were still baffled as to what was causing these awful symptoms, which now
included, continuous vomiting every two weeks for two days, stomach pains,
headaches and reflux. Different doctors had different answers, varying from;
constipation or an appendicitis to anorexia and bulimia.
Over the next couple of years I was admitted to hospital countless times.
As the time went on, the pattern to my vomiting became clearer and more
noticeable. I was sick every Monday for four days every two weeks.
Unfortunately this just lead the medical profession to believe my problems were
all psychological and related to being bullied.
Admittedly by this time I‘d missed weeks of school and was being very
badly bullied but I knew there was something physically wrong. Doctors and
nurses alike continuously tried to get me to “admit” to them that I was making
myself sick so I could get out of going to school. I was seven years
old!! I was referred to a number of psychologists who all came to the
same conclusion, and after every session wrote the same thing in the report
"Despite Rosie being bullied and having to cope with this illness, she is
a happy, bubbly girl who has no mental health issues." Even after this
most of the doctors and nurses were still adamant that it was in my head.
As time went on my condition continued to deteriorate with the vomiting
becoming more frequent and projectile. By this stage, at its worst the vomiting
episodes lasted ten days. I could quite literally flood the bathroom with vomit
and be sick up to forty times a day.
By now I had been referred to Brighton Children’s Hospital for more invasive
tests as my symptoms were worsening still, with no explanation and no
medication helping to ease the constant pain and suffering. It was thought that
if anything was seriously wrong it was more likely to show up with these tests
than with routine blood tests, that were regularly carried out with every
hospital admission.
Rosie endured many invasive procedures in a bid to determine what was causing
her suffering and daily symptoms, which by now included; Acid reflux, stomach
cramps, heartburn, constipation and vomiting.
next
The following investigations were carried out:
Endoscopies: An Endoscopy is a
test that enables doctors to looks inside the body. The endoscope is a long
flexible tube that you swallow. It has a camera and light inside it which
allows a clear view of the area that needs to be examined.
Biopsy: Again a tube is passed down your throat, this time with a
small hook on the end to take small samples if required.
PH Study: A fine tube passed through your nose into the gullet to
monitor your stomach acid.
Milk Tests: For this test you are asked to drink a milky drink
and then lay still so a type of scan can be done, this follows the milk through
the digestive tract to see how long it takes to pass and if there is any
reflux.
“These procedures were very stressful, as I’m sure you can imagine. They left
me in limbo and as strange as it may sound, I began to hope that these tests
would show a physical problem, at least then we would have answers and I could
then be treated effectively, if not cured and live a pain free life… be a child
again.”
To my dismay, all these investigations came back negative, meaning there
was still no explanation as to why I was having these symptoms, and we were no
closer to a diagnosis.
However, looking back, I realise something that certainly, logically,
could have led to a much earlier diagnosis.
Shortly after my Endoscopy in Brighton , the anaesthetist and surgeon
came to see my father. I have this awful memory of them arguing with my dad,
insisting I had eaten before the procedure. This couldn’t have been further
from the truth, I was starved for twelve hours pending the procedure, just as I
had been asked to do.
This indicates delayed gastric emptying, which is one of the most common
problems in people who suffer with Pseudo-Obstruction.
My condition remained the same for a short period, with countless
admissions to hospital where she endured endless blood tests, and x-rays.
Unfortunately as these basic diagnostic tests continued to show no
abnormalities, I became the topic of conversation amongst nursing staff and
doctors with very few positive comments exchanged.
Everyone at the hospital still insisted the problem was psychological,
it was impossible for me to persuade them otherwise. I had so much to contend
with at such a young age, it felt like I had the weight of the world on my
shoulders.
With the bullying at school becoming more severe, it wasn’t only nasty
comments that I dealt with every day but physical violence, just because I was
“different.”
When the nurses at the hospital became more aware of the severity of the
bullying, it just prompted more accusations and they insisted I saw my
psychiatrist more frequently. They were more adamant than ever that I was
making myself sick in a bid to escape the bullies.”
By the time I had reached eleven years old, my parents had become so
desperate they trawled the internet for advice and answers. They eventually
found a website which catered for people who were suffering from unexplained
vomiting that occurred in patterns. The symptoms listed on this site matched
mine perfectly. The name of the condition this website was dedicated to is
Cyclical Vomiting Syndrome.
My parents soon produced all the information they felt relevant to my
consultant. He almost immediately agreed that there was a strong possibility I
was suffering with this condition and it was decided, there and then that I
would be referred to a Consultant Paediatric Gastroenterologist at St Bart's
Hospital in London . This is where I met the man I believe saved my life, Dr
Nigel Meadows.
My parents, Dr Meadows and I discussed everything, from my
symptoms and negative test results to bullying and the way I had been treated
by other doctors in the past. He soon told us what we had known all along: I
did have a physical health problem…I was suffering from Cyclical Vomiting
Syndrome.
After the diagnosis I thought everything would improve, school would
become easier and people would finally believe and understand I was physically
ill, and eventually I would grow out of this, and be a “normal” teenager. How
wrong could I have been? Things went from bad to worse; no one at my local
hospital had heard of CVS so that of course meant that they didn't know how to
treat the condition. As it had never been heard of, people still believed it
was all psychological. I was still hardly at school so people had an excuse to
make up the most obscure rumours.
By the time I started senior school everyone had already developed their own
views on my life.
I was ill for the
first week of the first term of senior school, so when I did attend it
soon became apparent that the rumours were undeniably awful. According to the
bullies, I had already been pregnant 4 times and had had two abortions. On
many occasions I was asked if I had cancer.
The next year was totally awful, I had no friends, was getting sicker and was
still being bullied. I was being admitted to hospital more frequently, was
having more symptoms I was in constant agony and began to hate the life I was
living.
At my follow-up appointment with Gastroenterologist Doctor Nigel
Meadows I told him how my symptoms were continuing to worsen and
how I would now vomit for hours, if not days on end.The once recognisable,
highly predictable pattern of vomiting episodes was
becoming wildly erratic...
I had developed severe migraines, the reflux was worse and when I was
vomiting it was lasting for much longer periods of time. I also had to tell him
that I wasn’t receiving the correct treatment at my local hospital ( Eastbourne
) and that nurses still spoke about me as if I wasn't there and that everyone
still thought my conditon was psychological. He was upset by this and said he
would get in touch with the hospital and give them a protocol of treatment to
follow.
When I was 12, Dr Meadows suggested that past investigations
should be repeated, and even more invasive procedures should be carried out, in
a bid to determine what was causing the change in symptoms. My family and
I obviously agreed, hoping this would help them give me the
correct treatment that I so desperately needed.
I continued to deteriorate. My veins were now collapsing from needing
constant IV access; at one point I had fourteen canulas in nine days. Another
time I had one doctor attempted to canulate me thirteen times without stopping
or without any success, but still determined to draw blood by which point
nurses were literally begging him to stop, yet he still refused, by which
time I was so distressed, I ran as far away from him as I could, but he soon
found me, and told me he would now attempt to canulate me again…in my feet. And
he did, because if I had refused treatment, he would taken it as evidence of
self-harm and I would have been referred to a psychiatric unit.
next
After this traumatic experience we began to research other options,
and soon discovered that a Hickman line, was common practice in those who
needed continuous intravenous drugs. We discussed having a Hickman line
inserted at my next appointment at The Royal London and it was
agreed that it was for the best. We were told of all the risks this would
carry and we had rigorous training in using and keeping the line clean before I
was even allowed out of the hospital.
“Soon I was admitted for the next lot of investigations, I was relieved but not
surprisingly, nervous. This was when I met my great friend, Kayleigh, when I
found out that she had the same symptoms as me - it was a relief that I wasn't
the only one, and I empathised, but I felt so sad that someone else was
suffering as much as I was. I knew people with CVS but my symptoms were now so
much more severe than when I was diagnosed that I was doubting that I even had
the condition or if I had CVS and another condition on top. I was so confused.”
I had many of the previous tests repeated and also had
X-rays
Barium Meals / Barium Swallows
Manometries of the Oesophagus
Manometries of the Small Bowel
Ultrasound Scans
To my dismay, there were no changes in the results, no new findings, thus, yet
again no explanation to my ever-worsening, ever-increasing symptoms.
Unbelievably at this stage I wasn't losing any weight and looked
relatively well, but this in itself caused further problems: with me looking so
healthy, it was even harder to believe that I was ill at all.
Although I was glad that I looked healthy, and I could easily hide
behind a pretend smile, it made matters worse, it was so much easier for people
to believe I was making everything up.
As the bullies continued to punch, kick and threaten me on the rare
occasions I was able to attend school, it soon became too much, and my parents
decided it was best to start afresh in a new school.
At the beginning of year eight the bullying became so out of control, I left
and began to attend a new school. This was decided after someone I didn’t even
know started to threaten me, he followed me out of the school at home time, and
verbally abused me, calling me all sorts of names, and even involving my
family, when he ran out of insults, he spat all over me.
My father reported the incident, and even showed my Head of Year and
Head Teacher my phlegm-stained school uniform, but they seemed totally unable
to help.
When I finally managed to get a place at another school my happiness at
the prospect of a new start was short lived. It turned out the bullies from the
previous school knew people there and had told them all about me. By this point
my health was rapidly deteriorating and I spent more time in hospital than out,
I wanted to give up but I was determined I wouldn't let it beat me. I was
always exhausted, I just felt ill all the time, I went from being this bubbly,
outgoing girl who was never afraid to speak her mind, to a quiet mouse, who
totally lacked self-esteem and self-confidence.
By this time I was so poorly, school was becoming somewhat a distant
memory. My symptoms were now so bad that she was lucky to attend school once a
month. “I was now being sick up to sixty times a day, I was in unbearable pain,
with stomach cramps, reflux and migraines. I choked on food, I couldn’t sleep,
I was unable to establish whether I felt full or hungry, and I began to get
distended after eating. By this time I had had three Hickman lines and the most
recent one was now infected.
Now thirteen years old I was once again being admitted to hospital for
further investigation. This time there was a slight change in one of the tests,
but nothing significant enough to explain these dramatic changes in her
symptoms.
Dr Meadows diagnosed a “floppy oesophagus” and made some suggestions as
means of treatment, one of which was Botox to stiffen the oesophagus and the
other option was surgery but this was not really a possibility as the
tightening would stop me from being sick. Although this sounds like a good
thing, I would actually still feel the need to vomit and as the retching was so
powerful it would cause me to perforate my stomach.
THE COWARDLY NEIGHBOUR
At one point during my time at school the bullies had really caught me and I
had been quite badly beaten. I desperately called out to a passing neighbour
for help, but she turned her back on me in my need and distress. I had
been punched, had had my head repeatedly beaten against a wall, and one of my
attackers had tried to strangle me. I was too frightened to get on the bus to
go home. Terrified and alone, I began to vomit. I was so scared at this point,
I thought these people were following me, I was very dizzy from having my head
beaten against the wall, I called upon a neighbour for help but she just
refused. I think she was scared.
To this day I am convinced these brutal attacks happened because of my
illness. If those bullies had given me a chance and got to know me, the illness
wouldn't matter, I just think now that they were too immature to handle
anything different and new to them. The worst bit about it was our neighbour
who I begged to give me a lift. She had a good idea of how ill I was and how
badly I had been hurt, but she just put her foot down and drove off because she
didn't want to get involved. How on Earth can anyone ever blame kids when there
are parents like that?
UNBEARABLE PAIN
By the middle of year eight I was unable to attend school at all. I was often
simply too tired to function, was continuously vomiting and had unbearable
pain.
Sadly I had now grown used to being victimised and verbally abused. I
wasn't leaving school because of the bullies, they were not worth it and I
didn't want them to think they had won, because they hadn't. The illness was a
tougher nut to crack than they were and the pain they inflicted was nothing
compared to the excruciating agony that I had to put up with everyday anyway. I
was just took sick to attend.
Unfortunately none of the pupils understood my condition and neither did
my teachers. Even when I produced a doctor’s letter to excuse me from classes
whenever I felt the need to vomit, they refused to let me out, with obvious
consequences that cannot have endeared me to my fellow students. Or the staff.
My parents were soon getting accusatory letters from teachers saying
"Why make her come to school when she is clearly not well enough??"
My mum would reply with, "Because this is everyday life for her, she is
always ill, and even on a good day she is sick at least once. She needs to be
treated the same as everyone else. She needs an education."
The school tried to set me attendance targets, in the belief that I was working
some sort of glorified skive. When in exasperation my father explained to them
in great detail that I needed to be excused from classes to go and vomit,
that I had to carry syringes and needles with me at all times, as well as my
medication and an emergency kit in case my Hickman line fell out, it soon
became apparent to us that the school couldn’t cope with that much
responsibility and that attending school was therefore no longer an option. And
just perhaps we as a family had been clinging onto it for too long anyway, in
an attempt to keep some normality in our lives.
THE NEW FRONT LINE
For me the next battle started here. I still needed to learn, needed an
education, and so my parents applied for home tutoring for me. It was a total
nightmare as my condition wasn't recognised. We battled for years; I had one
hour a week tuition - that was it! And the tutor was useless, all she did was
talk and discuss her own issues. We rarely did any work, but my education was
everything to me, my one remaining link to normality, so I refused to give up.
The initial fight for home education continued for a year and then the
tuition finally increased to two hours a week. Then, at the end of school year
nine, after a long stressful battle her tuition was increased again to a whole
five hours a week. Still not a lot, but this time I really had a fantastic
tutor.
I knew we would get on as soon as I met her. Finally I was statemented
too, which meant I could have extra things to help with my education. By year
10 I discovered that I should be receiving at least ten hours a week as I was
starting my GCSE course work. It was discussed and debated by the authorities,
I attended lots of meetings and remained determined and fought for my rights. I
wouldn’t let this go; it meant so much to me to get a good education. But they
wouldn't budge; they said I had enough, that I didn't need anymore. The reason
I fought so hard was because - and this might sound silly - all the
people my age were doing this, getting an education. I needed to, it was my
dream to help others; it was my only connection with normal teenage life.
I was given a choice of subjects to do for my GCSEs; ICT, Humanities,
Food Tech, Child Development, Maths and English. I wanted to do far more than
this! I wanted to achieve so much! My dream was to take Double Science, Drama
& Music, Food Tech and Child Development, Maths, and English. However this
would have been near impossible with my frequent spells in hospital and the
constant need for medication that affected my ability to concentrate and
to retain information. I always felt drowsy and drained of energy but I
completed 5 GCSEs, doing nearly all the course work and all the revision in
hospital. I even took my first exam, ICT, in the Royal London Hospital .
next
By the time I was fifteen, my health had taken a real turn for the
worse. I lost three stones in as many months and hadn't had my bowels open for
three weeks. I was vomiting copiously at least twice a day and at the most,
sixty times a day. I was frequently bringing up undigested food eaten three or
four days previously. I had completely lost my appetite and had no energy. My
stomach was seriously distended, so much so that people were even stopping and
asking, "When's it due?"
Two months before my outpatient appointment, all the tests had been repeated
yet again, so when Dr Meadows called us to a side room, different to the one we
usually used, I knew something more serious was wrong. He sat us all down (me,
my mum and my dad), and gently told us that he had the results from the tests
and that it wasn't very promising. He told us that there had been a dramatic
change and that the explanation for the symptoms worsening, the slow gastric
emptying and weight loss was due to a condition known as Gastro Intestinal
Pseudo Obstruction, also called Chronic Intestinal Pseudo-Obstruction (or
simply "pseudo"). I burst into tears, I sobbed quietly as he
explained the rest of the news. It was all a blur from then on, all I could
think about was the people I knew with pseudo, all the people who were
seriously ill. The people who had died from it and all the complications it
brings - I just couldn't take it in.
As this was slowly sinking in, we were dealt another blow. Dr Meadows
admitted that he was seriously worried about my weight loss and told us that I
would now need a surgical GJ tube (Gastro Jejunostomy), a tube that is
surgically placed into the stomach and the jejunum, (a part of the bowel). i
would use the two ports - one, the bit in my stomach to drain acid and the
other, sited in the bowel, would be used to feed me. I would also undergo a
full thickness biopsy, to determine which type of pseudo-obstruction I had.
I couldn't stop crying, but of course I agreed as I wanted to get
better. I cancelled my holiday with the family and was rushed to hospital to
find the surgeon was away. The alternative was to have an NJ tube (a tube
through the nose and jejunum). After this tube was put down though, I vomited
so much it just came back out. I eventually had the GJ tube inserted but I had
many problems with it, including it getting dislodged, falling out, having it
reinserted five times, infection, and it coiling into the stomach.”
After seven months of complete agony my feeding tube was removed. By
this time the tube also caused me to go into complete obstruction. At one point
I was even vomiting faecal matter and wasn't able to eat or open my bowels.
I was in hospital for eight weeks and was put on TPN (total parenteral
nutrition, ie intravenous feeding) for three weeks. Since then I have been
admitted to hospital on many occasions with partial obstruction, where some of
the digestive system works but other parts don't. Long hospital stays are very
boring and I have had conflicts with the doctors, but I also get to meet lots
of interesting people.
Most of my friends are fellow patients. I hate to see them suffer. They
are all so courageous, so brave and intelligent. I can't help but think why?
Bravery and courage doesn't come from one person, we are all there to support
each other. I remember always my three brave angels who couldn't overcome the
condition, who are so sadly missed and who were so precious that they will
never be forgotten. If I hadn't been ill I would never have met these fantastic
people.
Since that horrible day when I was diagnosed with this condition, my
journey with this illness has led me down many different paths, some good and
some bad, but I will remember them all because they have made my life what it
is today. I have seen people I love dearly die before my eyes, I have seen my
friends get sicker, I have got sicker. I have seen the worry on my family's
faces and I have experienced things most people will fortunately never have to
experience. You have to use these experiences, don't dwell on them, make good
out of bad.
Today, I am stable, I live in a flat with my gorgeous long-term
boyfriend and my beautiful little boy….Yes you read that right, I managed to
have a baby. You see anything is possible, you just have to believe, have hope.
When I was diagnosed, I thought my life was over, but it wasn’t it was just
beginning. It hasn’t been easy, it’s been one long battle, but now I have all I
have ever dreamed of. I even plan to train as a nurse one day!
This illness isn't meant to stop you doing what you love, it isn't a
curse. It may feel like it at times, but you will learn from it and experience
so much. I have one simple message…. “NEVER GIVE UP!!!!”