Many patients who have a naso-enteric tube (NG, ND, NJ) inserted say that there is a little sharp pain when the tube reached the top of the nasal cavity and turn around, but following this it is only really a slight discomfort or irritation and once the tube has been in place for a few hours the irritation settles down.
Depending upon your health care team, you may be given some mild sedation and/or pain killers to help you, but often this is not needed. For placement of enterostomy tubes (PEG, PEG-J, JEJ, RIG, RIJ), sedation and pain killers and prescribes as these involve a small surgical procedure and often an endoscopy to aid in the selection of the best site for the tube to be placed. Due to the formation of a stoma in the abdominal wall, there will be some pain for a few days following the procedure whilst the stoma forms and the muscles in the area heal.
After the initial placement, there is unlikely to be much pain associated with the areas unless they get infected. This can be minimized by following the aftercare advice given by your health care team.
Displacement of the tube is more likely with the naso-enteric tubes, but you will be instructed how to minimize this from happening and given a method to follow to ensure that the internal end of the tube is in the correct place before you initiate the feeding. Enterostomy tubes are difficult to dislodge, as they are held in place by an internal fixation device and often there is less tubing on the outside of the body when not feeding to become tangled up and accidentally dislodged or removed.
You doctor will tell you what is happening and what you can and cannot do at regular appointments. If he/she believes that they can manage to eat food, then he/she will encourage you to encourage and enable them to do so. You will probably be advised to start slowly and will be given information on how to do this. Some children will not be able to eat anything at all, some will be able to eat a little and some may be able to eat normally and no longer need the tube and many will spend periods in each of the three situations depending on their state of health
Although the feed bypasses the mouth and therefore the taste buds by being administered directly into your digestive system, either the stomach or small intestine, some patients do report that they can taste the feed if they burp or if they have fed a large volume overnight. This is far more likely to be the case if the feed is administered into the stomach than into the small intestine, but often it is described more as a “shadow taste” that does not stay in the mouth as it would if you had drank the feed. If you do find that you experience a lot of reflux and frequently taste the feed, try using a mouth wash more frequently which should help remove the taste. If that does not help, speak to your nutrition team for advice.
This will depend on your condition and the advice given by your hospital. You may be able to eat whilst receiving enteral feeds and the tube is designed so that eating and drinking is comfortable even with the tube in place. If you are unable to eat and drink you may want to take your tube feeds at the same time your family is eating. Eating is a social experience. If you miss the taste of certain foods and are able to chew, but not swallow, you may be able to chew them and then spit them out. Sugar-free chewing gum may be helping in satisfying the urge to chew. If you are not allowed to eat or drink then it is important to clean your teeth at frequent intervals and to take regular mouthwashes. This avoids the build up of plaque and stops your mouth feeling dry.
People are tube-fed because they cannot eat enough ordinary food to get the nutrition and fluids they need. Some people who require enteral nutrition can eat normally, but not enough to meet their full nutritional requirements, whilst others can eat smaller amount of not at all. It is also possible that a persons’ needs may change over time and so regular reviews are essential to ensure that the person is getting everything that they need.
The stance on the use of ‘real food’ pureed down the tube in addition to, or instead of commercial feeds has changed over the years as more research has been done to see whether there are any benefits to individuals and whether it is possible to meet a person’s nutritional need adequately and safely.
The feeding tubes are however not designed to accommodate pureed foods and it is possible that blockages become more common if the pureed if not adequately blended to a very smooth and is not too thick a consistency.
A great deal of time and expense has gone into the manufacture of these feeds to facilitate that the nutrients are delivered in a form that is easy and affectively digested. There is a lot of evidence to show that the processing of pureeing foods, can for some foods reduce the number of vitamins and minerals available for absorption, meaning he/she does not get everything that you think you are giving them and that they need. If you still believe that you want to do this, then it is advisable to discuss this further with your doctor and/or dietitian.
A toolkit was put together by the British Dietetic Association (BDA) and can be found on their website.
Launch of BDA Practice Toolkit: The Use of Blended Diet with Enteral Feeding Tube
There are a number of different factors involved in deciding when it is best to feed your child and your child’s nutritional team will decide what the best method is accounting for your child’s needs and the practical issues around the actual feeding method and duration. Some children are fed continuously usually – overnight and are therefore unencumbered throughout the day. Others are fed at intervals throughout the day, similar to ordinary meal times, this can be via a pump or using the bolus method and some child use a combination of both methods, doing the majority of the feeding with the pump overnight and then a couple of bolus throughout the day. Combining the two methods can be beneficially for some child and their parents depending on the family situation and the needs of the child.
Different people have different needs for enteral feeding. Some patients feed themselves continuously, usually overnight and are therefore unencumbered throughout the day. Others feed themselves at intervals throughout the day, similar to ordinary meal times, this can be via a pump or using the bolus method and some people use a combination of both methods, doing the majority of the feeding with the pump overnight and then a couple of bolus administrations throughout the day. Combining the two methods can be beneficially for some people, especially if you are in employment and do not want to spend 10-14 hours attached to a pump.
Enteral feeds are supplied into the digestive tract (stomach or small intestine) and therefore the normal mechanisms that are triggered within the tract when eating will also take place during enteral feeding. The feeling of satiety "feeling full" is the result of distension in the stomach and intestine, typically, the result of the introduction of solids (food). However, this distention is also shown to occurs when enteral feeds are administered, thus producing a feeling of satiety.
In addition to this, the by-passing of mastication (the chewing mechanism), prevents the production of specific hormones which act on the digestive tract to stimulate and increase transit time through the digestive tract. Thus the absence of these hormones, slows down the transit time can results in prolonged feelings of being satiated. Occasionally, paients find that this slowing can result in feeling of bloating, diarrhoea, nausea and cramping. Should you encounter these sensations, talk to your nutrition team as there are medications and techniques which can improve things.
The artificial nutrition is not simply a liquid form of the foods you find in the supermarket, it is a sterile and specifically designed nutritionally complete liquid. There are a number of variations to the type of feed that is used for Enteral Nutrition and the exact preparation is dependent upon your individual needs. Your dietetian and nutrition team will have reviewed your specific needs regarding your energy and nutrient needs and will prescribe a solution to fit those needs and with your underlying condition in consideration. You may hear talk of Standard enteral feeds: which contain all of the carbohydrate, protein, fat, water, electrolytes, micronutrients (vitamins & trace elements) and fiber in the proportions you need. Another type is Pre-digested Feeds: these contain nitrogen as short peptides or free amino acids instead of the normal protein complexes and this improves the absorption of the nutrients in some conditions, such as inflammatory bowel disease. A third type is Polymeric feeds: these contain the nitrogen as the whole protein, but it is the carbohydrate that is partially digested (hydrolysed) and the fat is modified to simplify the absorption. The content of fiber with each type of feed is negligible and many commercially used feeds have versions with and without fiber added.
The artificial nutrition is not simply a liquid form of the foods you find in the supermarket, it is a sterile and specifically designed nutritionally complete liquid. There are a number of variations to the type of feed that is used for Enteral Nutrition and the exact preparation is dependent upon the needs of the individual. Your child’s nutrition team will have reviewed these needs accounting for the energy and nutrient requirements and will prescribe a solution to fit those specific needs. You may hear talk of Standard enteral feeds: which contain all of the carbohydrate, protein, fat, water, electrolytes, micronutrients (vitamins & trace elements) and fiber in the proportions you need.
Another type is Pre-digested Feeds: these contain nitrogen as short peptides or free amino acids instead of the normal protein complexes and this improves the absorption of the nutrients in some conditions, such as inflammatory bowel disease. A third type is Polymeric feeds: these contain the nitrogen as the whole protein, but it is the carbohydrate that is partially digested (hydrolysed) and the fat is modified to simplify the absorption.
The content of fibre with each type of feed is negligible and many commercially used feeds have versions with and without fiber added. In simple terms, the feed mixture is essentially a nutritional milkshake that contains all of the nutrients that your child needs. It is something that will be reviewed on a frequent basis as children are constantly in a state of growth and development, therefore it is likely that you may find the amount and types of feed that is prescribed to your child is altered. Despite the underlying health conditions which facilitated in the need for enteral feeding it is important that your child is able to grow and develop at a rate consistent with their peers.
Enteral nutrition is the method of providing an individual with nutrients through a tube directly into a part of the Gastrointestinal Tract. Commonly the nutrition is supplied directly into the stomach, the duodenum or the jejunum (both parts of the small intestine).
A condition caused by the rapid entry of nutrition in to the small intestine, which results in a large amount of water being drawn in also and causing distension and discomfort. There are 2 types “early” and “late”. “Early” occurs immediately and the symptoms include nausea, vomiting, bloating, cramping and diarrhoea, often with dizziness and fatigue. “Late” dumping which occurs within 1 to 3 hours after feed administration usually presents with symptoms such as weakness, sweating and dizziness. In addition to this and regardless of the type of dumping syndrome the rapid loading of the small intestine with hypertonic solution can cause the pancreas to secrete large amounts of insulin; resulting in a dramatic drop in blood sugar, leading to hypoglycaemia. This is referred to as “alimentary hypoglycaemia”. In patients on enteral feeding, particular where the feed is administered directly into the intestine (NJ or PEJ), it is important that the rate of administration is carefully selected to reduce the likelihood of Dumping Syndrome occurring.
As the name suggests Continuous feeding involved the administering of the feed over a specific duration of time, often at a specific rate, regulated by a feed pump. A giving set is used to connect your child’s feeding tube at one end to the feed bottle (or reservoir) at the other end. The giving set is then fed through a pump, which is programmed to run at a specific rate (which you will be advised about by your child's nutrition team). Should a problem be encountered such as a blocked tube or a finished bottle the machine will alert you to this, meaning you do not have to think about your child's feed all of the time. Bolus Feeding involves administering a specific volume of feed at a specific time of the day. This is often in 200ml units (although smaller volumes may be advised, especially when administered into the small intestine) and is done via use of a gravity drip; in which the feed is placed in a reservoir above your child and gravity allows it to flow through a giving set to the feeding tube. Alternatively the feed can be placed into a large syringe, which is connected to the feeding tube and slowly dispensed through the tube.
As the name suggests Continuous feeding involved the administering of the feed over a specific duration of time, often at a specific rate, regulated by a feed pump. The patient attaches a specifically designed tubing (giving set) to the feed bottle (or reservoir). The giving set is then fed through a pump, which is programmed to run at a specific rate (which you will be advised about by your nutrition team) before connecting it to the external end of the feeding tube. Once the connection is established you are free to get on with your normal activities or often go to sleep without worrying about it. Should a problem be encountered such as a blocked tube or a finished bottle the machine will alert you to this also, meaning you do not have to think about the feed at all. Bolus Feeding involves administering a specific volume of feed at a specific time of the day. This is often in 200ml units (although smaller volumes may be advised, especially when administered into the small intestine) and is done via use of a gravity drip (where the feed is placed in a reservoir above you and gravity allows it to flow through a giving set to your tube. Alternatively the feed can be placed into a large syringe, which is connected to your feeding tube and slowly dispensed through the tube
This is a common worry to which the first step is to ensure that the pump is adequately charged or plugged in to the wall socket. Some pump leads need to be pushed in firmly to ensure they are charging and it is easy to think it is plugged in when in fact it is not. If it definitely is broken, the first port of call should be your homecare company. Technically the pump belongs to them and you are only loaning the item, therefore they are responsible to ensure that it is serviced regularly and working correctly. They will try to ensure that you get a replacement pump as soon as is possible, but occasionally holidays and geography can make things difficult. Depending on your particular circumstances it may be possible for you to use the bolus or gravity method until your new pump arrives, but they will try to make sure that it is with you as quickly as possible.
Generally the materials used to make the bags which contain the fees are sturdy, but there is always the chance that the bag can leak. With so many different types of feeds available, all supplied in different types of packaging, there is no specific advice to be given. In general the safest and easiest thing to do is to stop the pump and check all of the tubing, particularly the reservoir end of the giving set. If you find that the giving set is at fault, replace it with a new one. If it is not the tubing then it is safer to discard the feed bag and the giving set and start again with a fresh bag and set. There is a possibility that the bag of feed was not sealed correctly in the first place and therefore not aseptic, which could lead to food poisoning.
The feed that you are prescribed is chosen by your nutrition team on the basis of your specific needs and underlying health condition. In the same way that there are a number of different brands of everyday food products there are also different brands when it comes to enteral feeds and just because the name on the bottle is different or the shape of the bottle is different, does not imply that one is superior to the other. Often the branding of the feeds is based upon which nutritional company supplies your local hospital and each company makes a full range of feeds that are matched by a similar product from another company.
NO, people on enteral feeding have the advantage of being able to pause and disconnect their feeds once it is started. Although this is not advised and should be kept to a minimum it is safe to do so, if necessary, such as getting ready in the morning, before the feed is completed. With advances in medical equipment this is not often required as many of the feeding pumps and equipment are small and portable and therefore your child can continue to get on with normal activities during feeding.
When you leave hospital you will told about the “Homecare” company that you local health authority uses. These will take over the responsibility for ensuring that you have everything that you need to be able to administer the feed and do so in a safe manner. Typically you will receive a phone call from the company about 7 days prior to your scheduled delivery date, to check on what stock you have left and what you require. After the stock check and order is processed you are given the opportunity to discuss any issues with deliveries, such as alternate address if you are not going to be at home. It is important to remember that it is your responsibility to ensure that you are able to collect the delivery; after all it is your medication that you are receiving. You cannot expect the courier to wait around for you or make repeat visits to your home to see if you are in to take the delivery, so it is recommended that you have someone wait in for the courier or arrange for an alternate delivery address before hand.
The placement is dependent upon your condition and the expected duration of your needs for enteral feeding. For individuals with a fully functioning stomach, it may be possible to administer the feed directly into the stomach, otherwise the stomach can be bypassed completely and the feed delivered directly into a part of the small intestine. For short term use a tube is passed up the nose and fed down into the stomach, duodenum or jejunum, these are known as naso-gastric (NG), naso-duodenal (ND) or naso jejunal (NJ). For longer term treatment a surgically implanted tube is placed through the abdominal wall, known as a gastrostomy (into the stomach) or jejunostomy (into the jejunum).
The rate of administering the feed is changeable, but it is not advisable to change this rate without consulting your child's nutrition team. They will have advised the rate that they believe is most appropriate for your child. It would not be there intention to make the feed last too long, especially in children, but it is known that delivering the feed too fast can cause complications, such as bloating, cramps, nausea and vomiting and in extreme cases Dumping syndrome.
The rate of administering the feed is changeable, but it is not advisable to change this rate without consulting your nutrition team. They will have advised the rate that they believe is most appropriate for you. It would not be there intention to make the feed last too long, as the ultimate goal is for you to get on with life as much as possible, but it is known that delivering the feed too fast can cause complications, such as bloating, cramps, nausea and vomiting and in extreme cases Dumping Syndrome.