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Intestinal
assessment
Information for families
Great Ormond Street Hospital
for Children NHS Trust
This information sheet explains about the intestinal
assessment process at Great Ormond Street Hospital
(GOSH) and what to expect when your child is being
admitted for assessment.
Great Ormond Street Hospital (GOSH) has a large nationally recognised
gastroenterology unit. This unit specialises in the assessment and
treatment of diseases of the gastrointestinal tract. Intestinal failure occurs
when for some reason the small intestine does not work properly. There
are a variety of reasons why this may happen. It is therefore important
to investigate your child’s gastrointestinal tract thoroughly so that the
correct treatment can be offered. GOSH has all the facilities needed for
the many investigations, tests and treatment your child may need.
The process of assessment involves an entire team of specialists
(multidisciplinary team), some or all of whom you may meet
during your child’s hospital admission:
„„ Gastroenterology consultants
„„ Consultant surgeons
„„ Clinical nurse specialists
„„ Ward nurses
„„ Play leaders
„„ Dietitians
„„ Pharmacists
„„ Social workers
„„ Psychologists
„„ Physiotherapists
Contents
Introduction.........................................................................1
How does the gastrointestinal tract work?......................2
What is intestinal failure?..................................................2
What causes intestinal failure?..........................................3
How will the team plan treatment?..................................3
Assessment process for intestinal failure..........................4
What tests and scans will my child need?.........................4
Discussing the results of these tests and scans.................5
What are the options for treatment?...............................6
What next?..........................................................................7
salivary
glands
oesophagus
mouth
diaphragm
liver
stomach
large intestine
pancreas
gallbladder
small
intestine
appendix
rectum
anus
How does the
gastrointestinal tract work?
The gastrointestinal (GI) tract is a
complex organ that extends as a hollow
tube from the mouth to the anus.
Its main function is to break down
food so it can be absorbed into the
bloodstream. The process of moving food
through the GI tract involves a complex
interaction between hormones (chemical
messengers) and nerves, so that food
is squeezed rhythmically through the
system (peristalsis).
Once food has been processed in
the stomach, it empties into the
small intestine where the majority of
digestion and absorption occurs. Here
it is mixed with bile and pancreatic
juice containing enzymes (proteins that
cause or speed up a chemical reaction).
The broken down nutrients are then
small enough to pass through the wall
of the small intestine, which contains
small finger-like structures called villi,
and then absorbed by the blood. The
blood is carried away from the small
intestine through the hepatic portal
vein to the liver, where it is filtered,
toxins are removed and the nutrients
are processed. The residue then passes
into the large intestine, where water is
absorbed to form solid faeces (poo).
Layer of
muscle
Submucosa
Mucosa
Lymphatic Blood
vessel vessels
Villus
Villi
(small finger-like
projections)
Circular folds in
wall of intestine
Submucosa
The small intestine is the most important part of the gastrointestinal tract as this
is where nutrients are absorbed from food and converted into a form that can be
used by the body. It is about 2 metres (7 feet) long in newborn babies and grows
to about 6 metres (20 feet) long by adulthood. It is made up of three parts:
„„ Duodenum – the first
part connected to the
stomach
„„ Jejunum – this makes
„„ Ileum – this is the
up about one third of
lower and longest part
the entire length of the
of the small intestine
small intestine
and leads to the large
intestine
The wall of the GI tract is made up from four layers, which are essential for
absorption and contain immune cells to protect against disease.
If a child’s body is unable to absorb enough nutrients and fluid, he or she will
usually show one or more of the following symptoms:
„„ Weight loss
„„ Poor growth
„„ Dehydration
What is intestinal failure?
Intestinal failure occurs when there is
reduced absorption by the intestine,
so that supplements of macronutrients
such as proteins, carbohydrates and
fats, or electrolytes such as minerals,
salts and water are needed to maintain
growth and development. If no
treatment is given or the body does
not compensate for reduced levels of
macronutrients or electrolytes, undernutrition and dehydration can occur.
What causes
intestinal failure?
There are two main reasons for
intestinal failure:
„„ The small intestine is too short to
digest food properly
•caused by a section of the
intestine needing to be removed
to treat conditions such as
gastroschisis, volvulus, trauma or
necrotising enterocolitis
„„ The small intestine is present but
does not work correctly
•Disordered motility – such as
pseudo-obstruction, neuropathic
(nerve) or myopathic (muscle) gut
disorders
•Autoimmune causes – where
the immune system mistakenly
attacks itself as ‘foreign’ causing
inflammation
•Congenital (present at birth) or
genetic (inherited) conditions
- such as microvillous atrophy,
tufting enteropathy or congenital
diarrhoea
Information sheets about some of
the above conditions are available in
information sheets from GOSH and
other organisations. Please ask the
team for details. As each of these
conditions needs to be assessed and
treated in a different way, a thorough
assessment is needed to confirm or rule
out each diagnosis.
How will the team
plan treatment?
When your child is first referred
to GOSH, he or she will be offered
an inpatient stay or outpatient
appointment depending on the
information given in the referral and
the needs of your child. During this
visit, a doctor will discuss your child’s
history in great detail and carry out a
full examination. He or she will review
any previous tests from your local
hospital if results are available and
make a decision about whether any
other tests are needed. Diagnosing
intestinal failure is a complex process
with many steps so it can take some
time to reach a decision. We will do
our best to keep you informed of our
progress towards a diagnosis.
Details of the outline plan for
diagnosis and treatment is in the
flowchart below. Please be aware that
not all children follow this plan exactly.
If it is likely that an alternative route
will be followed, we will discuss this
fully with you.
Assessment process for intestinal failure
Outpatient
Referral
Referral from
local hospital
Referral from
another team
at GOSH
Team discussion
of referral and
next steps
Decision for next
steps discussed
with child/parents
Short inpatient
stay on ward
(5 days)
Longer inpatient
stay on ward
Tests and
investigations
Team meeting with
parents to discuss results
and plan treatments
Further tests
required
Discharge to
home with
treatment plan
Outpatient
review
Discharge to local
hospital with
treatment plan
Refer to BMT
team at GOSH
Refer to Kings
College Hospital
for transplant
assessment
What tests and scans
will my child need?
Your child my need a variety of
investigations to diagnose the
underlying gut problem and find its
cause. Some of the investigations that
might be suggested include:
„„ Manometry – This is a test to
measure how well the muscles and
nerves in the stomach and small
intestine work. A catheter (flexible
plastic tube) is put through your
child’s nose, into their stomach and
then to the small intestine. Fluid is
flushed through it, which causes the
nerves and muscles in the digestive
system to start to move as if your
child had had something to drink.
The signals made by the muscles as
they do this are picked up by sensors
contained in the catheter, and these
are then recorded by a machine.
„„ Gastroscopy and colonoscopy – These
are tests which allow the doctor to
look directly at your child’s GI tract.
To do this test, an endoscope (a thin,
flexible tube with a bright light at
the end) is passed either through
your child’s mouth down into their
stomach for a gastroscopy or through
your child’s anus into the large
intestine for a colonoscopy.
„„ Video capsule endoscopy – This test
is used to view the middle section
of your child’s small intestine. Your
child will be asked to swallow a
capsule containing a tiny light and
camera, which transmits pictures
of the digestive system to a data
recorder worn on a belt around the
waist.
„„ Biopsy – This is a procedure to take
a tiny sample of tissue which can
later be analysed in the laboratory.
This is usually carried out during a
gastroscopy or colonoscopy using
an endoscope. If a full thickness
biopsy is required, your child will be
referred to the surgeons.
„„ Gastric emptying study – This is a
scan which shows how quickly the
stomach passes a liquid into the
small intestine. The liquid contains a
dye that shows up well on x-rays.
„„ Transit study - This is a test which
shows how quickly food passes
through the digestive system. Your
child will be given some pellets to
swallow at home and then a few
days later have an x-ray to see how
far they have travelled through the
GI tract.
„„ Electrogastrogram (EGG) - measures
the activity of the nerves in the
lining of the stomach, before, during
and after food using electrodes
(which look like round, blue stickers)
stuck to the skin of your child’s
tummy.
„„ Ultrasound scan – This uses sound
waves to take pictures of your
child’s body. The sound waves are
of a much higher frequency than
normal so you cannot hear them. A
jelly is used to help conduct them
inside the body. It is the same as
the ultrasound scans used during
pregnancy.
„„ Impedance study – This scan is
used to measure whether food and
stomach acid is travelling back up
your child’s oesophagus. A thin
flexible tube is passed through your
child’s nose into their stomach and
taped in position. While the tube is
in place, you will need to note down
what your child does, eats or drinks,
so that it can be matched up with
the results from the tube.
„„ pH study – This is a test that
measures gastrooesophageal reflux
(GOR).
„„ Contrast follow through – This scan
uses a contrast, a liquid that shows
up well on x-rays, to show your
child’s GI tract. Your child will need
to swallow some of this contrast as a
drink and then have an x-ray around
20 minutes or so later.
„„ Magnetic resonance imaging (MRI)
scan – This uses a magnetic field
rather than x-rays to take pictures of
your child’s body. The MRI scanner
is a hollow machine with a tube
running horizontally through its
middle. Your child will lie on a bed
that slides into the tube.
„„ Angiogram – This scan is used to
give a picture of your child’s blood
vessels and organs using a dye that
shows up well on x-rays.
In addition to these investigations, other general assessments may be suggested
to look at particular areas more closely. These could include the immune system,
metabolic system, genetics, liver and kidneys but will not be needed for every child.
Discussing the results of
these tests and scans
If your child has these scans during
an inpatient stay, the results will be
discussed at the twice weekly ward
round, following which the proposed
treatment plan will be explained to
you and your child. This may be a plan
for discharge, for further tests and
scans or for further treatment.
If your child has been discharged from
hospital or has not had an inpatient
stay, we will arrange an outpatient
appointment for you to discuss the
results and proposed treatment plan.
What are the options
for treatment?
It is difficult to predict which treatment
will be most suitable for your child
as this is dependent on the cause of
intestinal failure and the results of the
tests and scans. However, the options
generally include the following,
although some may not be suitable for
every child. Before you make a decision
about any of these treatments, we
will discuss the advantages and
disadvantages with you and explain
why each one has been suggested.
Diet
A full feeding history forms part of the
assessment process. This is important to
see which feeds and feeding methods
have been tried in the past, how
your child tolerated these and what
impact they had on his or her growth
and weight gain. As a result of the
full feeding history, the dietitian may
suggest altering your child’s feed in
some way, either in which feed is given
or how it is given. These could include:
„„ A different milk feed
„„ An altered diet, excluding certain
foods, such as cow’s milk or limiting
certain macronutrients, for example
fat or sugar.
„„ An altered method of feeding, such
as oral feeding or tube feeding
(nasogastric, gastrostomy or
jejunostomy).
„„ For some children, despite
trying various diets and feeding
methods, they are unable to thrive.
Parenteral nutrition, a way of
giving a solution of all the nutrients
needed for growth directly into the
bloodstream, might be suggested.
You will be involved in the decision
making process and we will give you
full instructions before you go home.
Booklets for care of nasogastric tubes
and gastrostomy/jejunostomy tubes
and about parenteral nutrition are
available from the team.
Medication
Your child may need to take medicines
to help with intestinal failure and
absorption difficulties. There are various
different types of medicine, some
of which require regular monitoring
with blood tests. All medicines have
some side effects and the aim of this
monitoring is to balance the benefits
brought by the medicine with any
unwanted side effects. We will make
sure you understand fully about the
medicine and monitoring required
before your child starts taking it. Any
medicine prescribed and dispensed
through the pharmacy at GOSH will
come with an information leaflet.
Other treatments
Some severe intestinal failure
conditions may need input from other
teams at GOSH and sometimes other
hospitals.
„„ Small bowel transplant – If this
is suggested for your child, he or
she will be treated under the joint
care of GOSH with Kings College
Hospital (KCH) in South London.
Together the teams will carry out
a full assessment of your child’s
suitability for transplant and make
a treatment plan for the future
after discussion with you and your
child. The assessment procedure
will involve a short inpatient stay at
KCH. For more detailed information
about the assessment and transplant
procedure, please see the booklet
produced by KCH, available from
your clinical nurse specialist.
„„ Bone marrow transplant (BMT) – This
will require your child to be referred
to the bone marrow transplant team
at GOSH, who will carry out detailed
assessments to check your child’s
suitability for a BMT, before either
looking for a donor within the family
or on the international register. The
BMT clinical nurse specialists will
explain further about this process
and give you more detailed written
information.
„„ Other surgical options – Surgical
procedures such as a STEP (serial
transverse enteroplasty) to lengthen
a short gut may be an option. If this
procedure is suitable for your child,
he or she will be referred to the
surgeons, who will discuss it fully
with you.
What next?
Following discharge after an inpatient
stay, we will send a short summary of
what happened to you, your family
doctor (GP), local consultant and
any other members of your child’s
healthcare team. Depending on the
diagnosis and treatment plan, further
outpatient appointments or inpatient
stays will be arranged for your child.
Are there any
support groups?
There are no specific support groups
for intestinal failure, but the following
organisations may be able to offer
support and advice.
Children’s Liver Disease Foundation
Tel: 0121 212 3839
Website: www.childliverdisease.org
PINNT - Patients on Intravenous
and Nasogastric Nutrition Therapy
and Half PINNT for younger feeders
Website: www.pinnt.com
Contact a Family
Helpline: 0808 808 3555
Website: www.cafamily.org.uk
Notes
© GOSH Trust December 2011
Ref: 2011F1008
Compiled by the Gastroenterology Department
in collaboration with the Child and Family Information Group.
If you have any questions about the small bowel
transplant referral assessment process, please contact the
gastroenterology department on 020 7405 9200 ext 8304
Great Ormond Street Hospital for Children NHS Trust
Great Ormond Street
London WC1N 3JH
www..goshfamilies.nhs.uk
www.childrenfirst.nhs.uk