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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