Monday, January 02, 2006

My appointment with a Neurological Dietitian on July 27, 2005

  1. How long does a tube last before it has to be replaced with a new one? 2 to 3 yrs

  2. Can I wear my back brace with a PEG tube? Has to be investigated with gastroenterologist. This may present a problem because if the PEG tube can not be installed in the stomach, it would have to be placed in the bowel which require a continuous hookup to a food supply. Hopefully this won’t be a problem where they would install a normal PEG where bolus feeding can take place.

  3. Can I alternate eating orally and then resort to tube feeding for the next meal if I had a tube and so on? Yes

  4. Does the tube sit flush with the outer skin or does it protrude beyond the skin. The stomma fits flush with the skin but the tube extends out by approximately 6 ins.

  5. What is the difference between bolus feeding and continuous feeding? Bolus feeding is intermittent feeding and hookup while continous feeding is ongoing.

  6. How often does the opening in the skin get infected? Sometimes gets infected.

  7. How does one get enough fibre in one’s tube feeding diet to avoid getting diarrhoeia?

  8. How would I take my medications when fed through a tube? They are crushed.

  9. How would I keep my normal weight at my normal standard when fed with a tube?

  10. How does one feed himself bolously? and continuously? Both are like gravity feeding from an elevated bag using a control valve to govern the amounts of food that is being fed through the tube. This feeding bag and tube has to be washed with soap and water after every feeding. Every 3 days it has to be washed with vinegar.

  11. Can you purchase tube feeding food in the grocery store as normal food is bought? No it has to be purchased from the pharmacy or from the hospital.

  12. Can one blenderize store bought food for tube feeding? NO

  13. Can one tube feed himself with Unsure? Not sure

  1. What does one have to do to maintain a feeding tube so that it does not clog up and get full of harmful bacteria and infected? It has to be flushed with water after every feeding to keep the PEG clear.
  1. I believe patients get tubes because they can not get adequate nourishment orally for various reasons: strokes, ALS, throat cancers, etc. I am not in this category as I am maintaining my normal weight. I am getting lots of nourishment.

  2. My 4 modified barium e-ray studies reveal no aspiration. I realize these tests are just snap shots in how one swallows in five minutes of living. It does not give one an indication how ones swallows over 12 or more hours of time in a day.

  3. I am fairly mobile and active. I am not confined to a bed like some or most of your patients.

  4. I do not want to be tube fed at this point in time. Please refer to my reasons that I wrote up a month ago and which I gave to Virginia Kerry.
  1. To learn as much as I can now about tube feeding

  2. To see what feeding tubes look like and to learn about all the accessory devices used in tube feeding.
I should consider having a PEG only if I get pneumonia very often (say once).
I should consider tube feeding only if I am unable to maintain my weight and maintain my self with proper nourishment.
THINGS I MAY WANT TO CONSIDER NOW or in the near future
  1. The hospital sells TRI-Puree from Campbells at $ 2.50 each frozen.

  2. Arrangements for this has to be made through the dietition
  1. PEG feeding can either be done by bolous feeding or by continuous feeding.

  2. If the feeding tube can not be placed in the stomach because of my back support brace, it may be placed in the duodenium (PEJ). A J-tube (PEJ) requires continuous feeding which I believe can be done during sleeping hours. I don’t think that I would like that???

  3. Toasting any type of bread makes it easier to swallow. Untoasted bread usually forms a large thick bolus which is more difficult to swallow. Bagles are too thick or dense for me to handle

In the meantime it is very important that I keep up my lung hygiene treatments to keep my lungs clear as possible to avoid pneumonias.

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