By Fern Ellen Cohen (PALS)
For most PALS, the decision to get a percutaneous endoscopic gastrostomy (PEG) or feeding tube will have to be made sooner or later. There is understandably some trepidation -- and even fright -- at the thought of a feeding tube. For many PALS, swallowing and chewing difficulties can lead to decreased intake of food. This can cause a drop in weight, from moderate to severe. Decreased food also means decreased nutrition and the end result can be weakness. Furthermore, there is risk of choking and aspiration. A PEG tube can make life so much easier, and keep a PALS healthy and strong. It can ensure against choking and can even help conserve energy because as ALS progresses, it takes more energy to eat a meal. Some PALS report that it can take as long as two hours to eat dinner, and that they are exhausted afterwards.
Read more: http://als-ny.blogspot.com/2009/02/peg-tubes-myths-and-facts.html
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PEG Tubes - Myths and Facts
- By alsgny
- Posted February 17, 2009 at 11:21 am · 4 replies
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- By Chuck1106
- Posted February 21, 2009 at 2:28 pm
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I agree, I got my peg back in September of 2008. I got in case, I didn't think I needed it.But then less than a month later I caught pneumonia from food that went into my lungs after a coughing spell. And then soon thereafter, it happened again.
I now take 99.9% of my nourishment thru the peg. It has been a lifesaver for me.
When I got ALS I weighed 150. Two months later I was at 120. Since the peg I am now at 130. And steady.
Take care all.
Chuck
- By contkins
- Posted February 22, 2009 at 1:52 pm
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I agree, sooner is better. I waited until my weight was dangerously low. Now it is a slow struggle to regain it. I started with boulbus gravity feedings, but got extremely hungry at night. I now use a pump 24/7. The Zevex EntraLite Infinity pump is small, fits in a backpack and can hang on my wheelchair handle, plus it pumps in any position. It's much better than the big standard pumps. There is a variety of enteral foods, with different calorie amounts, so you may need to try different ones to find the one that is right for you..
- By pcormier
- Posted March 22, 2009 at 11:15 pm
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My husband will probably have a feeding tube inserted within a month. Is there anything we should be careful of. Any tips presurgery?
- By pcormier
- Posted May 27, 2009 at 10:37 pm
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My husband had his g-tube put in in early April at Mass General Hospital. He was expected to stay for two nights but they kept him for four. It was nice not to feel rushed about. I now flush it once a day with a small amount of water (30cc, about 1/4 cup water). The nurses said tap water is fine but we use distilled water which we have already with his V-pap machine.
He has not yet had any trouble chewing or swallowing. He has not yet used the tube for nurishment but it is a relief to know that it is in place. He had it put in now as his FVC is/was in the 30's %.
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