Gut motility assessment

Information for families

Great Ormond Street Hospital for Children NHS Foundation Trust 2

This information sheet explains about the first phase of the assessment process to diagnose gut motility problems and what to expect when your child comes to Great Ormond Street Hospital (GOSH) for assessment.

Great Ormond Street Hospital The process of assessment involves (GOSH) has a large internationally an entire team of specialists recognised (multidisciplinary team), some or unit. This unit specialises in the all of whom you may meet during assessment and treatment of your child’s hospital admission: diseases of the gastrointestinal „„Gastroenterology consultants tract. There are a variety of reasons „„Consultant surgeons why children may have gut motility „„Clinical nurse specialists problems. It is therefore important to investigate it thoroughly so „„Ward nurses that the correct treatment can „„Play leaders be offered. GOSH has all the „„Dietitians facilities needed for the many „„Pharmacists investigations, tests and treatment „„Social workers your child may need. „„Psychologists „„Physiotherapists 3

How does the 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 and then to expel the waste. The process of moving food through the GI tract involves a complex interaction between hormones (chemical messengers), muscles and nerves, so that food is squeezed rhythmically through the system (). oesophagus

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longitudinal muscle circular muscle myenteric plexus submucosa

submucosa plexus

Once food has been processed in the nutrients are processed. The the stomach, it empties into the residue then passes into the large small intestine where the majority intestine, where water is absorbed of and absorption to form solid faeces (poo). occurs. Here it is mixed with bile The entire length of the and pancreatic juice containing gastrointestinal tract contains enzymes (proteins that cause or nerves and muscles that work speed up a chemical reaction). The together to move food through broken down nutrients are then from the oesophagus to the anus small enough to pass through using peristalsis. If a section of the the wall of the small intestine, intestines does not contract these which contains small finger-like nerves and muscles or they are structures called villi, and then present but not working correctly, absorbed by the blood. The blood peristalsis cannot occur so food is carried away from the small cannot be pushed efficiently to the intestine through the hepatic next part of the tract. This is referred portal vein to the , where it is to as a gut motility problem. filtered, toxins are removed and 5

There are various types of gut The assessment motility problem or dysmotility one of which is the spectrum process disorder chronic intestinal pseudo- When your child is first referred obstruction (CIPO). There are to GOSH, they will be offered an different types: neuropathic inpatient stay lasting between (nerve) motility problems, one and three weeks. During this myopathic (muscle) motility stay, a doctor will discuss your problems or a problem with the child’s history and carry out a full pacemaker cells (interstitial cells examination. They will review of Cajal or ICC) which cause the any previous tests from your local muscle contractions. There may hospital if results are available and also be a mixture of neuropathic/ make a decision about whether myopathic motility problems. any other tests are needed. A There are other types of gut nurse or dietitian may contact motility problem, such as you before your child’s admission Hirschsprung’s disease. to carry out a pre-admission assessment so their stay is as Chronic intestinal pseudo- streamlined as possible. obstruction (CIPO) is a condition where the intestines appear to be Diagnosing gut motility disorders blocked but in fact nerve and/or is a complex process with many muscle problems are stopping food steps so it can take some time to being squeezed efficiently through reach a decision. We will do our the gastrointestinal tract. Pseudo- best to keep you informed of our obstruction is a rare condition progress towards a diagnosis. which can occur at any age but is usually diagnosed in childhood. 6

What tests and scans will my child need? Your child my need a variety of the nerves and muscles in the investigations to diagnose the digestive system to start to move. underlying gut problem and find This movement is detected by its cause. Further information sensors contained in the catheter about each of these investigations and recorded by a machine. is available on our website. To „„Antroduodenal manometry carry out some of the procedures – This is similar to colonic to inspect the colon, bowel manometry but looks at the prepared will be needed to empty muscles and nerves in the stomach the gut of any faeces. This will and small intestine. While your be needed even if the colon is child is under general anaesthetic, already disconnected by a stoma. a catheter is put through your The length of time needed to child’s nose, into their stomach prepare the bowel will depend on and then to the small intestine. your child's current bowel pattern. Once they have woken up from Some of the investigations that the general anaesthetic, fluid might be suggested include: is put into the catheter, which „„Colonic manometry – This is causes the nerves and muscles in a test to measure how well the the digestive system to start to muscles and nerves in the large move. This movement is detected intestine work. While your child by sensors contained in the is under a general anaesthetic, a catheter, and the movement is catheter (flexible plastic tube) is recorded by a machine. inserted into your child’s anus and „„Gastroscopy and passed up into the large intestine. – These are tests which allow Once your child has woken up the doctor to look directly at from the anaesthetic, fluid is put your child’s GI tract and are also into the catheter, which causes carried out while your child is 7

under general anaesthetic. To do your child’s GI tract. Your child this test, an endoscope (a thin, will need to swallow some of this flexible tube with a bright light contrast as a drink or in some and camera at the end) is passed solid food and then have an x-ray either through your child’s around four hours or so later. mouth down into their stomach „„Transit study – This is a test for a gastroscopy or through which shows how quickly food your child’s anus into the large passes through the digestive intestine for a colonoscopy. system. Your child will be given „„Biopsy – This is a procedure some pellets to swallow on three to take a tiny sample of tissue consecutive days and then a which can later be analysed in few days later have an x-ray to the laboratory. This is carried see how far they have travelled out during a gastroscopy or through the GI tract. colonoscopy using an endoscope. „„Electrogastrogram (EGG) – If a 'full thickness biopsy' is This measures the activity of required, your child will be the nerves in the lining of the referred to the surgeons as this stomach, before, during and involves taking a larger sample of after food using electrodes bowel in the operating theatre. (which look like round stickers) „„Gastric emptying study – stuck to the skin of your child’s This is a scan which shows how tummy. It is similar to an ECG quickly the stomach passes a test and lasts about four hours. liquid or solid into the small „„Impedance/pH study – This intestine. The liquid or solid is a test which measures the contains contrast, which shows movement of all liquid up and up well on x-rays. down the oesophagus. This „„Contrast follow through can enable the doctors to see (upper GI study) – This scan uses whether your child has either a contrast, a liquid that shows up acid or non-acid reflux or a well on x-rays, to show details of combination of both. A thin 8

tube – similar to an NG tube – If they have a stoma already, the containing a probe is inserted disconnected section will need to into your child’s nostril and down be cleared as well. We will explain the back of the throat into their about bowel preparation as how oesophagus. The other end of the long it will take and how it will be tube is connected to a recording carried out depends on your child's box. The tube will stay in place constipation history. In addition to for 18 to 24 hours and your child these investigations, other general should eat or drink as usual. assessments may be suggested to look at particular areas more closely. „„Ultrasound scan – This uses These could include the immune sound waves to take pictures system, metabolic system, genetics, of your child’s body. The sound bladder, liver and kidneys but will waves are of a much higher not be needed for every child. frequency than normal so you cannot hear them. A jelly is used to help conduct them inside the body. It is the same Discussing the as the ultrasound scans used during pregnancy. results of these „„Magnetic resonance imaging tests and scans (MRI) scan – This uses a The test results will be discussed magnetic field rather than by the team at GOSH and the x-rays to take pictures of your doctor who referred your child in child’s body. The MRI scanner is a multi-disciplinary team meeting a hollow machine with a tube after your child’s stay. This may running horizontally through its result in further tests and scans or middle. Your child will lie on a admission for surgery. After the bed that slides into the tube. meeting, the team will contact you to explain the next steps to Your child's intestine will need to be planned. be cleared of faeces for all of the procedures looking at the colon. 9

What are the options for treatment? Before you make a decision about These could include: any of these treatments, we „„A different milk feed. will discuss the advantages and „„An altered diet, excluding disadvantages with you and explain certain foods, such as cow’s why each one has been suggested. milk or limiting certain It is difficult to predict which macronutrients, for example fat treatment will be most suitable or sugar. for your child as this is dependent „„A liquid diet. on the results of the tests and „„An altered method of feeding, scans. However, the options such as oral feeding or generally include the following, tube feeding (nasogastric, although some may not be or ). suitable for every child. „„Parenteral nutrition, where a solution containing all the Diet nutrients needed for growth is given directly into the A full feeding history forms part bloodstream. of the assessment process. This is important to see which feeds You will be involved in the and feeding methods have been decision making process about tried in the past, how your child your child’s diet and we will give tolerated these and what impact you full training and instructions they had on their growth and before you go home. We will weight gain. As a result of the full also liaise with your local team feeding history, the dietitian and so you have support when you medical team may suggest altering return home. Booklets for care of your child’s feed in some way, nasogastric tubes and gastrostomy/ either in which feed is given or jejunostomy tubes and about how it is given. parenteral nutrition are available from the team. 10

Medication Surgery Your child may need to take The most common operation medicines to help with gut motility suggested is formation of a and any associated gastrointestinal stoma, where the surgeon brings problems. There are various a healthy part of the bowel to the different types of medicine, skin surface and forms an artificial some of which require regular opening ( or ) monitoring with blood tests. All through which your child can poo. medicines have some side effects This can relieve pressure in the and the aim of this monitoring is bowel (decompression) and allow to balance the benefits brought by faeces (poo) to be passed more the medicine with any unwanted easily. In CIPO, it is hoped that it side effects. We will make sure prevents further damage to the you understand fully about the bowel. If it is indicated that your medicine before your child starts child will benefit from a stoma, taking it. Any medicine prescribed the stoma care nurse specialist will and dispensed through the visit you to explain further. pharmacy at GOSH will come with an information leaflet. 11

What next? Further Following discharge after an information inpatient stay, we will send a summary of our discussions and and support results to you, your family doctor The Hirschsprung’s and Motility (GP), local consultant and any Disorders Support Network is other members of your child’s an international group offering healthcare team. The aim is to support to children and families work in collaboration with your with all types of motility disorder. local team to develop a treatment Visit their website at plan, which may require, further www.hirschsprungs.info or outpatient appointments or telephone them on 07935 787 776. inpatient stays. PINNT (Patients on Intravenous If your child needs an inpatient and Nasogastric Nutrition admission for formation of stoma, Therapy) is an organisation for the surgeons and their admission anyone receiving tube or intravenous team will contact you with further feeds. They have a special section for details. Your child will be under children and young people called the care of the surgeons for this Half PINNT. Visit their website at admission but the Gut Motility www.pinnt.com team will be kept informed of your child’s progress. © GOSH NHS Foundation Trust March 2015 Ref: 2014F1362 Compiled by the Pseudo-obstruction team in collaboration with the Child and Family Information Group

Great Ormond Street Hospital for Children NHS Foundation Trust Great Ormond Street London WC1N 3JH www.gosh.nhs.uk