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What are your thoughts about feeding tubes?
Many pALS rely on a feeding tube for their nutrition. Some decide to forgo them entirely. Opinions abound.
Do you, or your pALS rely on a feeding tube, and would you recommend it to other patients? If you’ve decided not to have one, tell us what influenced your decision.
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5 Replies
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Unfortunately, I had a horrible experience with the gastrointestinal doctor. He placed a PEG tube under general anesthesia. We didn’t get care instructions or how too information, before leaving the surgery center. Unsuccessful at 5 tries, I made an appointment with the physician. He said it must not be working based on my previous gastrointestinal surgery. He then pulled the PEG tube in the office and patched it with a 4×4.
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Oh my! What an awful experience.
What do you do now for nutrition?
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Three years in and I still eat normally. I had a feeding tube put in about a year ago. We put in a high caloric formula in most nights after dinner. So, well use to it at this point. When we put water through it for cleaning purposes, its like a chill in my stomach. Whew! At any rate, we feel prepared for the future when the feeding tube might be my only way to have nutrition.
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Thank you for sharing your experiences, John. Please keep us updated if you discover any tips or have any (hopefully not!) … changes.
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I got my tube several years ago before I needed it.
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