Adjusting to tube feedings is an experience that is extremely variable. For some, the feeding tube is put in
before swallowing problems make eating dangerous. For them, the tube is an easy way to get medications down and get
plenty of water. Supplemental feedings through the tube help maintain weight and nutrition. A meal of a tube feeding
can be a real time saver for a caregiver. I have a can in the morning since that is the busiest time for my husband
caregiver. Not having to fix and feed me breakfast on top of getting me washed, dressed, and beautified to face the
day is great.
The choice of what to put down the tube depends on several factors; caregiver's time, digestive problems,
medical conditions, insurance coverage. Tube feeding formulas don't have milk in them because so many people are
lactose intolerant. They may have protien from dairy products which don't contain any lactose so there is no lactose
intolerance or allergy from them.
Be aware that Ensure, Boost and other brands available at local stores are supplements and not "complete
nutrition" even though they use those words on their website. Their FAQ page says, "Ensure ready-to-drink shakes and
drinks can be used as a snack and as an occasional meal replacement." Their formulas are only to be used twice a day
and one formula three times a day to "not exceed the Upper Tolerable Intake Levels (ULs) for any vitamins and
minerals." The maximum calories in a serving is 350. That is only 700 to 1050 calories per day. Without other
nutrition that is a very strict weight loss diet!
"Real" tube feeding formulas are able to provide all the nutrients needed to replace a normal diet and need not
be for short term use only. These are unflavored and not intended to be swallowed, only used through a feeding
tube.
Top brands such as Jevity have different types to meet the calorie requirements of individual patients. The
higher the amounts of calories, protein, etc. the thicker the formula and the need for more free water. Free water
is plain water with nothing added. Anything added requires a portion of the water to be used to flush the
ingredients from your body, so coffee, tea, soda should not be considered as good fluid intake.
Nearly all contain fiber for bowel regularity. There are also specialized formulas for diabetics, people with
liver, kidney, or lung disease. Your doctor or a dietitian or nutritionist can recommend a brand but be prepared to
change brands if one doesn't work well for you.
The big question is always" Does Medicare pay for tube feeding formulas?" Yes, the formulas and
supplies are covered by Medicare Part B and most insurance.
Formula won't be covered unless it is the primary source of nutrition and you can't eat well enough to
maintain your weight without it. Medicare covers tube feeding formulas if they provide all or the majority of your
nutrition. Being able to swallow small amounts of specific foods doesn't disqualify you, but if you still eat most
of your meals and just use the tube feeding as a supplement or convenience, Medicare won't cover it.
A form/documentation by your doctor is required for Medicare reimbursement and a diagnosis of ALS covers all
the requirements.
Standard tube feeding formulas are covered as well as special formulas needed by diabetics, kidney or liver
patients, etc. (Do an internet search for Medicare Part B Enteral Nutrition Reimbursement Manual.pdf. It lists many
but probably not all covered formulas.)
Natural formulas may be covered if your doctor documents an allergy or intolerance of standard formulas. Simply
prefering a natural formula isn't covered. Unlike standard formulas, natural formulas cannot be left out of the
refrigerator very long so careful storage and attention to freshness is necessary.
The cost of foods and supplements used to make your own blenderized formula is not covered.
If you get formula through a Medicare provider, compare the amount of your copay against the price you would pay
buying it yourself online—no prescription needed. Often prices are so jacked up by Medicare approved providers
that you end up paying more copay even after Medicare limits the amount Medicare will pay.
Many people opt to continue using regular food by blenderizing it. Some feel this makes them feel more normal
while others believe it provides better nutrition. Home blended, familiar foods are often better tolerated but are
more time consuming for the caregiver and may not be as nutritional. Careful storage and attention to freshness is
necessary. A proper balance of nutrients, not the latest health food fad, is necessary and this requires a cook who
is knowledgeable or willing to learn. Eating what the family eats may be fine, but it does depend on how much time
the caregiver has to devote to meal preparation. Caregivers are often overwhelmed and exhausted as care needs
increase. It is important that both the person with ALS and the caregiver be open to using prepared formulas
partially or completely.
A Little Noted Feeding Tube Plus
You know those times when the whole family has stomach flu and you are dreading catching it and the nausea,
cramping, and weakness that proceeds every bout of vomiting? When you feel that building up, you can skip the worst
of it by using the big syringe and plunger to empty your stomach. No barfing!
Digestive problems when beginning tube feedings aren't the norm but do occur. Common problems are diarrhea,
bloating, cramping, or nausea with feedings. There are a number of formulas available and a dietitian will evaluate
you and suggest a formula and amounts. If there are problems, the dietitian can make changes until a solution is
found.
Often the solution to tube feeding digestive problems is an adjustment in how the feeding is given. Cold
feedings cause cramps. (Putting the next few cans on top of the refrigerator brings them to a comfortable
temperature for me.) The first feedings need to be small and given slowly as tolerance increases. Even later, too
much feeding at once causes problems. Some people can tolerate a couple of cans at once, but many, especially those
not yet on a vent or using BiPAP after eating, have problems with big volumes. Using the plunger to push feedings in
is not necessary or comfortable. Use the big syringe as a funnel and let it flow in by gravity.
Some people do
better with feedings given at a slow drip. The feeding can be given from a bottle or a bag suspended from a pole,
hook, chandelier, or on a special pump to precisely measure the drip rate. That is seldom necessary because the
tubing from the bag has a clamp that can regulate the drip rate. Running this type of feeding overnight with an
occasional "snack" during the day can free you from the tube and make moving around easier.
Feedings should be given sitting up just as you would normally eat a meal, and you should remain sitting up for
at least a half hour after eating. heartburn (esophageal reflux) is no more common with tube feedings than regular
food, but sitting up will help prevent it in people prone to heartburn. If you have home nursing care, you will once
again find your nurses applying nasogastric tube feeding rules. A nasogastric tube passes through the sphincter
(muscular valve) between the esophagus and stomach. The tube can keep the sphincter from closing completely and
allow the feeding and stomach acids to leak back up the esophagus, especially when lying down. So a nurse won't
let you lie flat, even you never get heartburn and could take your feedings standing on your head!
A Warning
If the person has a trach as well as a feeding tube, be certain that every caregiver is alert to the risk of
mistaking the balloon port on the trach tube for the feeding or medication port on the feeding tube. The ports can
look very similar, right down to the color. Feedings given during the night may be hooked up without turning on
full lighting and be attached to the wrong port. Really unlikely, but stranger things have happened.
Too often problems that are attributed to tube feedings are no such thing. Bloating, gas, abdominal distension,
nausea, and vomiting are all signs of constipation. Unrecognized and untreated
this can lead to a bowel obstruction, a serious problem often requiring hospitalization. This problem is
especially common in the week following having the tube put in. Any anesthesia puts the bowels to sleep and they can
be slow to wake up and resume the muscle contractions that move food along the digestive tract and turn it to fecal
matter and cause a bowel movement. If you are one of the lucky few who escape from the hospital within hours of
having the feeding tube put in, it is extremely important not to begin tube feedings until the bowels are back at
work. Use a stethoscope or put your ear to the person's belly and listen for gurgling. It won't be a constant
sound but should be there. That indicates all is well and slow, small feedings can begin. Passing gas is another
sign that the bowels are working, and actually having a bowel movement is cause for great joy and celebration!
Prescription pain meds are also notorious for causing constipation. That doesn't mean you have to suffer,
but you should take extra precautions. As mentioned earlier, a stool softener (some form of docusate sodium,
available without a prescription) started before you go in for your feeding is very helpful. It prevents the stool
from hardening too much as it moves through the bowels. It is available as a liquid but the pharmacist at the drug
store may have a day or two delay in getting it in stock. If you take it by mouth before getting your feeding tube,
DO NOT take it straight! Put it in orange juice or other thick liquid or it will burn all the way down. Once your
feeding tube is in, you can put the Docusate liquid down the tube.
Until you are well established on tube feedings and having regular bowel movements, keep track of when you last
had one.
A little tutorial about the consistency of bowel movements is needed here. Diarrhea and liquid stools are not
the same. Diarrhea stool contains brownish water with bits of stool. That is likely to indicate that you cannot
tolerate the type of formula being used. It is also common after time on antibiotics. Liquid stool is a thicker
brown liquid that can be from either of the above cases. More importantly in this situation, it can also indicate
constipation or blockage since only liquid stool can make it around the compacted stool in the bowel. Unless the
amount of liquid stool is huge and frequent, the cause is constipation with obstruction. It cannot be counted as a
bowel movement. Give a strong dose of a laxative. If no results in 24 hours, repeat it, or step up to an enema. If 5
days pass with no real bowel movement or the person won't eat, is nauseated, call the doctor. If vomiting starts,
call immediately or go to the Emergency Room, as you have reached Code Brown Concrete Alert and may require medical
dynamite.
