Gastrostomy / PEG with swallowing problems
The following threshold lowering information about gastrostomy or PEG, and the whole process around it is there to easier the decision making.
Below an explanation of the term PEG, which with we are all familiar.
The ‘P’ stands for Percutaneous, meaning that there is passed through the skin.
Endoscopic refers to the technique that is used when the tube is inserted, a technique in which there is to insert an endoscope or telescope in the stomach, so that the physician has direct visibility on what is happening.
The ‘G’ of Gastrostomy stands for an opening in the stomach.
RIG means radiological inserted gastrostomy. This is a somewhat newer technique and means that the tube is inserted under radiographic imaging, so without endoscopy.
Food and drink
Food and drinks are among the basic pleasures of life.
From our birth we begin to suck, we'd pick up and stabbing things in our mouths, we suck our thumbs until the time comes that we are told we are too old for that. As an adult, we begin to use other things: a cigarette, chewing gum, the tip of a ballpoint pen, we bite our nails. There is apparently a persistent need in finding oral pleasure, enjoying food and drinks, which is after all one of our basic needs. Moreover eating and drinking is usually done in a social context, we eat with our family, and we go to mom on Sunday to enjoy the menu of the day.
We celebrate special occasions such as birthdays, Christmas and weddings and even funerals with food and drinks. Preparing food and eating together is a sign of love and commitment in most families. It is therefore quite understandable that patients, when told that their way of eating should be replaced or supplemented by feeding through a tube, have a real hard time dealing with it.
… and swallowing
A gastrostomy can mean a solution for people who have problems swallowing.
When swallowing decline, changes occur in the feeling of well-being of the person, even so that he /she may not enjoy eating anymore as before.
Undoubtedly the patients lose weight, in part by the disease itself. The muscle mass decreases, and thereby the weight as a result of the lowered nutrition intake. We are all aware of our bodies and how we look, and for some people this is of great importance. Most of us are happy with a few pounds less, but if that weight loss continues, people start to worry about getting too skinny, especially relatives and neighbors are concerned about this weight loss.
When discussing the tube implantations, for most people it affects the awareness of their body, the mere thought of having that tube somewhere in them, seems unbearable. Moreover, they worry whether their sense of hunger or thirst may still be there.
It is for sure meaningful to inquire about hunger or thirst because it is an important sign of their well-being.
Experience teaches us that hunger is not the biggest problem, because our ALS are not so active anymore. Usually they have less desire to eat, patients rarely complain about hunger, even at a late stage of their disease. When swallowing decline it is mainly the thirst that is much more common.
If the patient is thirsty, and drinking is not (anymore) possible, it is important to consider alternatives. There are always devices such as droplets, or other solutions. However, the information on our website shows that making special foods, adjusting your diet or even the way you eat, can be time consuming and requires great effort. You must find a balance in the time that you need to eat and drink, and the time that remains for other 'more enjoyable' things and consider whether to easier your food intake by using a PEG.
Choking and coughing
An ALS patient may, more than anyone else, suffer from coughing when eating and drinking. Therewith it nourishes the fear of choking. We want to emphasize someone with ALS will not die by choking. Choke is indeed an unpleasant experience, hence the importance of dietary changes, softer foods...
If you suffer from secretions in your throat, and eating and drinking become a real battle, a gastrostomy may be considered. Even if you suffer from dry mouth and difficulty to swallow your food, this may recommend to you. The risk of pneumonia, caused by the accumulation of food and drinks, that with small bits and pieces end up in the lungs, it is not as big as generally believed.
At this stage your dietitian, speech therapist or physician will talk about the possibility of a gastrostomy. First and foremost it is important to know whether the patient sees himself as someone who wants a PEG, and whether he can correctly assess its possibilities.
When the patient is in principle against a PEG, we must respect his decision. Still it’s very important to make sure that the patient has all the necessary information and that he takes his time to reflect his opinion, before he makes an irreversible decision.
The placing of a PEG
Not only for the person himself, is the question about the timing of a PEG placement important. The opinion of the people helping him / her should count.
It is understandable that most ALS patients want to postpone a gastrostomy as far as possible. However, the literature shows that it is better and safer to plan this surgery in time.
This advice was formulated in 1999 by a workgroup set up to search the published literature to determine the best recommendations for having a gastrostomy. They concluded that the surgery should be considered as soon as swallowing difficulties occur, to avoid a hasty taken decision later on. Withal it should be best to conduct the gastrostomy when the breathing capacity still is at fifty percent of the accepted normal value, and this for both the maximum safety and efficiency of the whole procedure.
Since the risks increase as the disease progresses and it the intention is to gain as much as possible for the well-being, there really is no reason to postpone the decision for the surgery.
What is the usual procedure?
Gastrostomies need to be inserted in a hospital. It requires at least one night, it's better to stay a little longer in the hospital until you are confident enough to use it at home. The procedure is performed under sedation, and not under general anesthesia, so you are asleep and unaware of what is happening around you, but you are not unconscious. That makes it safer for your breathing.
The surgeon or gastroenterologist looks into your stomach with a lighted telescope to investigate its inner walls for the best spot to insert the tube. It only needs a small puncture for the tube to fit through. The tube has a small balloon at the tip and a plastic clip to hold it in place. After the procedure, which lasts no longer than fifteen to twenty minutes, you will be awakened, and is it all over. You cannot eat or drink in the first twenty-four hours, but if all goes well, you can start using the tube the next day and you may also just take anything by mouth.
PEG's are common procedures in hospitals. The process is known to all emergency services and in the larger hospitals. It is recommended that the surgeon or gastroenterologist discusses the general condition of the patient with the neurologist or GP. The risks associated with the surgery should be appointed. It is understood that patients may die with any of the surgical procedure, even for small ones.
The risk of mortality (while inserting all possible PEGs for all kinds of reasons, and sometimes even in case of very fragile humans), is between one and two per cent, and there are a few percent risk of other signs of disease without causing death. The surgery is therefore not completely without risk.
If something goes wrong it often is respiratory complications, especially when the PEG is inserted at a later stage of the disease, when the breathing is not as strong anymore. Sedation can still weaken breathing, and weakness of the throat muscles may occasion some saliva or secretions to enter the lungs and cause an infection. It goes without saying that each wound in the skin can infect or bleed. The latter is not common and can be easily remedied. It is indeed true that the surgeon may bring the tube in the wrong place, but with competent people who act according to established procedures, this would not be the case.
Because some people have their stomach at a place other than normal, the surgeon can find no access through the skin into the stomach. This means that these patients cannot opt for this procedure because of purely anatomical reasons.
Advantages of a PEG
The biggest advantage of PEG is that it is a very easy way to provide in your food and fluid intake, or just as a supplement to what you take by mouth. That way, you can also continue to take your medication during the course of the disease. The PEG helps to stabilize the weight of the patient, some even gain some weight in the form of subcutaneous adipose tissue and they mostly feel better about themselves. Most people show a greater sense of general well-being once they have a PEG. It certainly saves them time and effort, they can eat what they want, and then finish with a dietary intake via PEG. The nutrition, which is inserted into the PEG, is a fully balanced diet that only has to pass through the tube. There is no need for separate or additional preparations.
It is actually a fairly discreet object. Clearly, if you are in company and you try to be as independent as possible, you do not want to walk around with something remarkable. A PEG is hidden under your clothes when you're not using it, and therefore invisible to the outside world. We believe it is a good palliative measure. For some patients the PEG helps prolong life, especially if they already have to contend with swallowing problems early on when they are still in good shape. For them, it is important that they get enough energy to continue their activities.
A gastrostomy is something you better start to consider early than late so you’d be able to make a thought through decision at the right time. This means that the procedure can be performed when you still have good breathing and the risks are very small. It also means that you can benefit from the PEG for a large part of your disease, instead of only at the end.
Other therapeutic aspects of swallowing problems
Attitude and food
The patient, especially in the early stage, can be helped with good posture instruction and training of swallowing frequency. The basic principles are:
- Deliberately trigger the swallow and focus on the swallowing.
- Sitting upright, with the longest possible stretched neck and the head a little bent over with food in the mouth, in the initiation of swallowing lift, at the right time lift the head some, but don’t stretch forward.
If liquid is no longer to be taken properly, it can be bound with binding agents to form a homogeneous gruel. When there is not enough strength to chew, it’s best to crush or grind the food.
While eating it is best not to drink between solid food intakes.
Foods that stimulate salivation like chocolate and milk products should be avoided.
The salivation can be treated by means of:
- A suction device
- Irradiation of the salivary glands
The nasogastric tube is considered in situations where it is expected this will be needed for only a few weeks
The weight should be closely monitored. Frequent, small meals are recommended, as well as calorie and protein-enriched meal, if necessary, temporary supplementation via nasogastric tube for example in case of significant weight loss.
Even if swallowing is so difficult that complications develop, one can decide for tube feeding.
In tendency to constipation is possible to add bulk fibers to the tube-diet.
For better oral hygiene, when in early phase and with poor hand function, one can use an electric toothbrush. Also mouthwash as in instructed posture is possible, if one can keep rinsing liquid in the mouth.
At a later stage you can work, when with vulnerable oral mucosa, with gauze around the finger. Teeth 'cleaning' will then give a better result than an electric toothbrush. When necessary dental care the dentist must be well informed about what the patient can and cannot.