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

The First Tube

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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