Feeding Tubes for ALS
Although we often refer to a feeding tube as a PEG, technically the tube is a “feeding tube” and “PEG” is just one of three possible methods used to put the tube in place:
- If you look up “feeding tube” you will see pictures of people with tubes in their nose. Ignore these. They are for temporary use and are not for people with ALS.
- PEG: Percutaneous (through the skin) Endoscopic (inserted using a scope down the throat and into the stomach) Gastrostomy (an opening through the stomach wall, abdominal muscle, fat layer, and skin).
- PRG: Percutaneous (through the skin) Radiological(using x-ray radiology to visualize the stomach) Gastrostomy (an opening through the stomach wall, abdominal muscle, fat layer, and skin).
- Surgical Gastrostomy, done in surgery.
Another feeding tube option is a J tube which can be placed by either PEG, PRG or surgical method. For this, the feeding tube is placed in the jejunal section of intestine just beyond the stomach. Since the stomach is mainly a blender that liquifies food before it moves into the jejunum, the digestive process isn't disrupted. This type of tube is used for people who have problems with gastric reflux (food moving backwards from the stomach into the esophagus). That causes heart burn and scarring of the esophagus. The potential for that liquid food to move upward far enough to get into the lungs is a concern especially for ALS patients who can't sit up after tube feedings.
Either way, a tube is placed through a tract through the abdominal wall so that liquified food can be poured directly into the digestive tract rather than being swallowed. Regardless of the method used, the tube itself will be chosen from several similar brands. Rather than callng it a PEG, it should be referred to as a G tube or J tube, technically accurate regardless of the procedure used. Feel free to call it a feeding tube, G tube, J tube, Harold, Eloise, or other name of your choosing.
ALS can start with swallowing problems or swallowing problems can occur later. Choking on food or liquids begins intermittently and progresses to inevitable. The immediately life threatening problem is choking badly enough to block the airway. A slower but potentially fatal problem happens as the muscles needed to swallow safely weaken, and food and liquids are aspirated into the lungs causing pneumonia. Without a feeding tube it is not a matter of if you get pneumonia, but when and how often.
At the same time quality of life deteriorates. Dehydration causes low blood pressure, dry mouth, and adds to problems with lung congestion and constipation. Meals are long and drawn out from difficulty chewing, exhaustion, and frightening choking episodes. Both patient and caregiver dread meal times and fear that each choking episode may be the last. Food choices become limited, and eventually even blenderized food is dangerous. Weight loss is significant.
There is no need to experience all the fears, frustrations, and misery of swallowing problems. In the past, most ALS patients lumped having a feeding tube in the same category as going on a ventilator. Today most patients recognize that a feeding tube is a simple, inexpensive, minimal care way to add months, if not years, to their life and quality of life. It reduces stress for everyone, can be used only for supplemental feedings, pills, and extra water and only gradually stepped up to full use when swallowing is not safe at all. And it can be removed at any time you don't want to continue with it.
Without a feeding tube, the process of living with ALS changes to the process of dying from it. For some people this is fine. They have decided that they do not want, cannot accept, cannot afford, cannot deal with life with ALS. But I can tell you with absolute certainty that a decision made before the reality of swallowing problems are experienced is far less a decision than a wish. As with all the decisions to be made in the course of ALS, you simply cannot know how you will feel until you are at the point where a decision has to be made. That doesn't mean the issue of a feeding tube can or should be ignored until the decision has to made. A responsible ALS patient will educate himself or herself about feeding tubes for ALS well in advance of the need so that an intelligent choice can be made. It is important to note that a very large majority of people with ALS report that getting a feeding tube was a good decision and that they would recommend it.
When choking first begins it is time to have a swallow study done. You will be given various textures of food to chew and swallow. The food is mixed with tasteless white goop so that as you swallow, all the stages of swallowing can be seen on X-ray. A therapist can then see how bad your swallow is and recommend ways to make eating safer; chin down to swallow, thickened liquids, double swallow each bite, blenderizing meats.
Even if your swallow study shows minimal swallowing problems, it is time to begin considering if you will use a feeding tube. ALS will progress and swallowing will become hazardous. There really is no point in waiting. Caring for an unused feeding tube is a simple matter of a quick wash of the stoma with soap and water and putting a few ounces of water down it daily. Many people have trouble swallowing pills when swallowing problems first start. Crushing them and putting them through the tube makes life easier. When you can no longer feed yourself, a can of formula is a time saver. Breakfast from a can really helps shorten the time and effort of getting you up in the morning. And you can continue to eat normally until that becomes unsafe. Many people begin by using the feeding tube for quick meals and supplemental feedings. Later the tube is the main source of food and eating is for pleasure.
When to get a feeding tube is generally thought of as being determined by the onset of swallowing problems. While that is true, the degree of breathing problems is also very important in determining when to have a feeding tube put in. The usual recommendation is to have the feeding tube put in when your breathing capacity falls to around 50%. Even though you may not need the feeding tube for food and water yet, putting the tube in early greatly reduces problems. A breathing crisis during the procedure is unlikely and you will be all around healthier if it is done before you have trouble eating and drinking.
The feeding tube can be put in later but problems are more likely. Placing a feeding tube when breathing problems are advanced is complicated by difficulty keeping the patient well oxygenated while under anesthesia and, if intubation and a vent is needed, it may be difficult to get off the vent afterward. Another problem with delaying feeding tube placement happens as the diaphragm, the muscle that stretches across the bottom of the rib cage, weakens, allowing the stomach to move upward under the edge of the rib cage. That makes positioning the feeding tube through the abdomen into the stomach more difficult.
Breathing is a big concern during this otherwise minor procedure. For respiratory support he may use BiPAP or, if your respiratory status is poor, intubation (a breathing tube through the mouth into the trachea) may be needed. Whether or not you will spend a night in the hospital depends primarily on whether your breathing becomes a problem and your doctor's preferences.
The decision regarding which method to use for insertion of the feeding tube will be made based on your breathing status and possibly the availability of a Radiologist who performs PRG's. Although PEG is more common, PRG is now being used more frequently for ALS patients who have a moderate or severe level of respiratory involvement. (Moderate = lung capacity of 30 to 50%, Severe = less than 30%) It is especially helpful in cases where the weak diaphragm (the muscle that separates the abdominal organs from the chest) has allowed the stomach to move further upward under the rib cage.
The PEG procedure is generally done in the Endoscopy Department of the hospital.An Endoscopic tube is placed through the mouth and into the stomach. The camera of the endoscopic tube allows the inside of the stomach to be seen. The PRG procedure is done in the Radiology department with radiography (live x-rays) being watched during the procedure. The x-rays allow the stomach and other organs to be seen.
For either procedure the patient will have an IV for medication and be sedated. BiPAP can be used during the procedure and breathing will be monitored. The sedative may be given with pain medication for deeper relaxation and sleep. The amount of sedation/pain medication for the PEG procedure is generally higher because the endoscopic tube is quite large. For the PRG a much smaller and softer tube is put through the mouth to the stomach.
After sedation the Endoscopic or smaller tube is inserted.From this point the procedures are very similar. The direction to best enter the stomach is identified and the area on the upper left abdomen is numbed. A guide wire is used to make a path from the small abdominal incision to the stomach. The feeding tube is pulled along the same path by the guide wire. The guide wire is then removed by pulling it up the endoscopic tube or the smaller tube and out the mouth. Done!
Immediately after you wake up after the tube is placed, you will probably want some strong pain medication. By the next morning the pain should be considerably less but you will still want some kind of medication. Tylenol will soon be enough. Because placing the tube requires going through abdominal muscle, pain when moving will last several days. Using a pillow to support your abdomen when lying on your side in bed will reduce pain.
If you are able to meet with the doctor performing the procedure before the feeding tube is put in, ask to see the type of tube you will have. If not, ask the nurse afterwards. Knowing what the whole thing looks like, inside and outside parts, is reassuring in its simplicity and the knowledge that you don't have to be an engineer to understand how it works and how to troubleshoot problems.
The first feeding tube may be a long, opaque, rubber-like tube, a clear soft plastic tube, or it may be a clear soft plastic that extends only about six inches out from the skin.
The first tube is nearly always held in the stomach by a flat or mushroom shaped disk rather than a balloon as may be used for replacement tubes. Further up the tube is another bumper or pair of plastic wings. This bumper encircles the tube but isn't attached to it so that it can be slid up or down the tube. It has a firm grip on the tube though, and won't slide by itself. The purpose of this bumper is to stabilize the tube and to keep the tube from being sucked into the stomach by normal digestive action. The inner bumper or balloon would then block the flow of food into the intestines.
The first tube may be a single tube or may contain another separate tube inside it. At the top of the tube are one or two ports. Note: These are the most common configurations for the first tube, but there are other types. Again, knowing which type you have and being given the package it came in, complete with an illustration of the tube, is very helpful.
A single port tube is used when the tube feeding will be given slowly from a bag. It can be run through a pump that will deliver a precise amount of feeding per hour. This is handy for patients who don't tolerate getting a large amount of feeding at once. A low tech way of doing this is to use a clamp on the tube to adjust the flow to a rate the patient can tolerate.
If the tube has two ports, the larger one has a tab top that is opened for feeding. A large 60 cc syringe is used for this port. It has a tapered tip the fits into the port. The fit isn't one that will grip the syringe so I strongly recommend holding the syringe and port together with one hand while pouring the feeding. Using the plunger in the syringe is totally unnecessary. It increases the risk of blowing the feeding all over, or giving the PALS a stomach cramp, and isn't significantly faster. Just use the syringe as a funnel and let the feeding run in by gravity. If it doesn't flow well, either the liquid is too thick and needs water added, or the PALS needs to recline more for the feeding.
The other, smaller port is for medicines. Medications can easily clog the small medication tube and are nearly always given through the larger feeding port. The only use for the medication port is to give meds if the patient has a continuous drip feeding. It saves the messy process of opening the running feeding port to add meds. The medicine port will only attach to a syringe that screws in, called a Luer lock syringe.
In my experience, much of the pain I experienced was due to the tightness of the outside bumper on the tube. Surgeons push these down against the stoma (opening through the skin) very tightly and I can only guess that the reason is to pull the inside bumper or balloon snuggly against the stomach wall inside. This pressure would help prevent bleeding from the hole in the stomach wall. Unfortunately, what is snug on the inside puts painful pinching pressure on the skin. The outside flange digs into the skin and even looks painful. This is easily and safely fixed the day after surgery. The flange is soft plastic ring, triangle, or pair of wings that is not actually attached to the tube. To back it away from the skin, simply lift the opposite edges of the flange and pinch them up against the tube. This will open the hole in the flange and allow it to be slid along the tube. It may stick at first and you need to be careful not to tug on the tube, but with gentle manipulation, it will move and the pain relief will be nearly instant.
The combination of anesthesia and pain meds will almost inevitably cause constipation if a stool softener (Dulcolax, Colace, or Docusate) isn't taken daily, ideally starting a day or two before the feeding tube is put in. It is critical that you not begin eating or being fed through the tube until your intestines "wake up” from any anesthesia you are given during the procedure or surgery. For some reason they are slower to shake of the effects of anesthesia than the rest of the body. This applies to any procedure or surgery! There is some evidence that gastric motility, the passage of food through the stomach and intestines, is slower in ALS patients, but whether this is a direct effect of ALS on digestive muscles is far less likely than the effects of not being able to get up and walk! If you ever had surgery before ALS, you know that you were ordered up and walking far sooner than you wanted to. The assumption is that it was to help you get your strength back. Not really. It was to get you breathing more deeply and get your bowels working.
If you are in the hospital during this time, your nurses should be listening to your lower abdomen with a stethoscope to hear the gurgling that signals the return of bowel function. Until then, you must not be fed. Severe problems with the intestines can occur in anyone after surgery and because of immobility, ALS patients are somewhat more susceptible. If you have the tube placed in an outpatient procedure and go home after or are only kept overnight, you probably haven't been given heavy anesthesia and shouldn't have this problem, but waiting to heard bowel sounds before beginning eating is still important. A stethoscope is handy but just putting an ear to your lower abdomen will let a caregiver hear the gurgling. Once you are being fed, if you haven't had a normal bowel movement by three days, it is time for a laxative. If no results in twenty four hours, repeat the laxative. Let your doctor know if you aren't able to go by five days. Don't mistake passing liquid stool for a bowel movement. When constipation becomes serious, only liquid stool can get past the hard stool blocking the intestines.
The skin opening for the feeding tube is called a stoma. The name has nothing to do with the word "stomach" in spite of the spelling. The word stoma refers to any tunnel through the skin and underlying tissue to a place inside the body. Stoma can refer to the opening of a tracheostomy, colostomy, urostomy, and others.
If you are told to clean around the tube with peroxide, stop using the peroxide after about a week. It is great for breaking down dried blood and gunk and foaming it away, which is why it is commonly used after any surgery. However, continued use also breaks down the "scaffolding" of blood clotting needed for wound healing. The constant disruption of the attempts to heal cause the body to try harder by producing even more healing tissue which is called granulation tissue. This becomes chronic around the feeding tube and repeated bouts of painful, burning, bleeding granulation tissue occur. So stop using the peroxide. It is not effective for preventing infection anyway. Washing once or twice daily with soap and water will do just fine. There is no longer a need to make washing it a sterile procedure (sterile gloves, sterile water, and q-tips) by this time. Even so, care needs to be taken: Use a different wash cloth than the one used for the rest of your bath. A thin, cheap or worn out wash cloth gets under the bumper much better than a plush expensive one. Antibiotic soap is not necessary (and environmentally bad as it ends up in our water supply). The amount of antibiotic and the time it is on the skin is ineffective anyway. The soap itself has just as much antibacterial action. A split gauze 4x4 under the flange plate will catch any drainage and keep the plastic from irritating the skin. At first Bacitracin ointment should be applied with a q-tip, but can be skipped after a few weeks.
feeding tube stomas (openings) never heal completely so you do need to watch for signs of infection such as pain and tenderness and pus. You can easily tell the difference between infection and granulation tissue. Infection will cause the entire stoma to be red and sore. Granulation appears as raw, red bulges that bleed easily. Granulation tissue will shrink to nothing in a day (possibly two) by applying a dab of non-prescription hydrocortisone cream. Don't use it daily, just when the stoma has granulation tissue. Doctors are fond of using silver nitrate sticks to burn the granulation away. Ouch. You can get these for home use. There may be some reason why doctors prefer silver nitrate -- they can't all be sadists -- but I have never heard the reason.
Another possible source of irritation around the stoma is leaking of stomach acid. The skin will be reddened and feel like a sunburn. Put Mylanta or a paste of crushed Rolaids or any other antacid on it. The stoma will seldom quit leaking entirely. Tube feeding or other stomach contents generally appear as tan to brownish gunk. Some blood isn't uncommon and is only a cause for concern if it saturates the 4x4 gauze repeatedly.
When you get the first tube and with each change, ask to keep the package the tube came in. This will help with replacement of the same type and size of tube if it should come out.
When you first get a feeding tube, have one replaced, or slide the bumper back, make a note of the position of the bumper on the numbers along the tube for comparison if problems occur.
When your feeding tube is first placed or replaced or with any abdominal pain, checking to make certain that the tip is in the stomach is critical. Running tube feeding into the abdomen rather than the stomach causes severe complications. So, with the first feedings, you will be taught to check tube placement before feeding. Any pain during these checks beyond the discomfort of having the tube moved around, indicates trouble requiring a call to the doctor. The pain will be bad and there will be little doubt there is a problem.
- Begin by checking the position of the outer bumper. The number closest to the stoma opening should match that which you so carefully recorded the last time the feeding tube was put in or the bumper adjusted.
- Next, use the big syringe and its plunger to draw back and see if you get stomach contents. If so, you are done checking and can go ahead with the feeding. If the stomach is empty you won't get enough, if any, stomach contents to be sure, so additional checks are needed.
- Put your ear on the persons belly or use a stethoscope to listen for a whoosh and gurgle as you use the syringe to push some air into the stomach. If that checks out it means the tip is in or near the stomach. "Near" isn't good enough so do the next step.
- Use the plunger to push some water in and then try to pull it back out. If you use cold water the person may feel a cold sensation in the back of the throat because the sensation is transmitted there, not because the water is going up there. If this step checks out without sudden pain, you can go ahead with the feeding.
The only better check is an X-ray. This will probably be done if when you have are having the tube replaced but certainly isn't necessary before every feeding.
How long do you have to keep doing this song and dance every time you use the feeding tube? No one will give you a straight answer to that! My best answer is until you have done it enough times without any sign of trouble that you are comfortable skipping it. Or when you are just tired of doing it over and over. If you have home nursing care, be prepared for this ritual to go on forever. Most nurses are taught feeding tube care based on the nasogastric (through the nose and down to the stomach) type of feeding tubes that are far more common in hospitals than feeding tubes. Nasogastric tubes can easily be tugged up out of the stomach by a patient or even cough/gagged upward. If that happens there is real risk that a feeding will end up in the lungs. Bad thing. So, nurses with hospital experience have the need for ongoing tube placement checks burned into their brains and this may follow them into home care even though feeding tubes aren't as problem prone as nasogastric tubes. Once in, a feeding tube isn't going to go any where unless it is pulled hard. If that should happen, of course you will want to check placement before using it again.
The Number One rule for caring for a feeding tube is to flush it with at least two ounces (60 cc's) of water every time you use it and once a day if you are not using it. Unless you do that religiously, even fanatically, the tube is going to get plugged up. To flush the tube, use the 60 cc syringe as a funnel. Don't use the plunger to push the water through, allow it to flow in by gravity. You will quickly become accustomed to the speed at which the water will flow in and can tell if the tube is gradually clogging up.
A plugged tube may have to be replaced, but usually can be unplugged if attended to promptly. If you are having problems with a newly placed tube, it probably isn't simply clogged if you have been flushing it well. This situation requires a call to the doctor. However, in a tube that has been working well, check the markings on the tube to make sure it is still in the stomach. If that checks out, try these steps:
- Because the rubber/plastic is soft you can attempt to dislodge a clog in the external section of the tube by squeezing the tube as you move your fingers down it towards the stomach. A little lotion on your fingers or the tube will help.
- Using the syringe, push about 20 cc's of air forcefully through the tube.
- If it won't go in, the clog is a big chunk and will need to be dissolved. Sometimes it will soften just by filling the tube with water and letting it set for a few hours and then using the syringe to push water through.
- Another possible fix is to put Coca Cola in the tube overnight. Urban legends abound about the harshness of Coke, but this does seem to work!
- Use a feeding tube brush or pipe cleaner. Pipe cleaners of the type used for crafts are too soft to work. Real pipe cleaners from a tobacco or pipe shop are stiff and work well if you can find the right size. If you use a pipe cleaner, don't push it in past the point where the tube goes through the skin. Brushes can be found online by doing a search for tube feeding brushes. The info may say it will work with a 20 French tube or larger. Since it would be very rare for an adult to have a tube smaller than a 20, this brush will work.