ALS From Both Sides, Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

The Procedure

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:

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 liquefies 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 heartburn 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 liquefied 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 calling 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 another name of your choosing.

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 afterward. 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.

first tube The first tube is often held in the stomach by a flat or mushroom shaped disk inside the stomach rather than a balloon as may be used for replacement tubes. Further up the tube, on the skin, 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.

single port tubeA 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.





two ports 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.

If it has three ports, it has a balloon in the stomach. That third port is used to inflate the balloon with water or air and to deflate it for removal. This type of tube isn't used as often as a first tube as the bumper type.

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. outer bumperThis 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 a 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, intestines are slower to shake off 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 hear 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.

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