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Feeding Tube Question
I would much appreciate others input here. Over the past 6+months, my neck and swallowing muscles have weakened enough now that my intake isn’t sufficient. I’ve been encouraged to have a feeding tube installed to supplement my still able to somewhat eat meals. I’ve noticed from pictures, other members here with the nasal tube. Is there a particular reason you can’t or unable to have a stomach port? Is the surgery the reason? Thanks for any input provided.
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7 Replies
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Hey Kip! Great question. I’m hoping others will chime in with their personal experiences. Alyssa rocks a ng tube I believe. Initially I did have a nasal tube but that was primarily because we hoped it would be temporary. Since it ended up being long-term and the tube aggravated my passages I had the peg tube placed. Mine was done under twilight because I was opposed to being put under. Now I have a Mic-key button which is lower profile and a good option for me as it doesn’t interfere with activity. My main nutrition comes from the tube but I do snack and eat when I choose to. Have you tried speech therapy to help with swallowing and fatigue?
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Thanks for the reply. The Mic-key looks like a nice “solution”. I was really hoping to not be put completely under as well. I haven’t seen a speech therapist, no.
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I went with the stomach tube because a NG tube destroyed my ability to eat regularly .if you have the option, get ENFIT connections.less spills and leaks.
Go to the speech therrapist, you want to keep the ability to eat as long as possible.
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Second the ENFit connections. They’re so much better than the original ports.
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nine years ago I got a G-tube. By the way, if you see any spelling errors is yours it is because Apple voice control is horrible and I don’t have the time to be particular about this writing. Anyway, the idea of the tube it’s a good one, but for me it turned out to be a little bit more trouble than it’s worth. Apparently, because there is hardly any body fat around my internal organs, over Time my stoma war out. If it doesn’t seal and round the G-tube, eventually everything I ate or drank end up in my lap. Hi was malnourished. My heart rate was down to 36. When I went to the hospital, they wanted to give me drugs. All I said was that I needed protein and it was imperative to close that hole so I could eat. What do I know? I’m just A hopeless cripple who didn’t go to medical School. They changed their mind in the middle of the night and instead of admitting me they sent me home. With a low heart rate add in spite of the explanation I gave them which anybody’s mother would agree with wholeheartedly. Distance from the inner wall of my stomach to the epidermis is 1.5 cm. If yours is similar, then I would caution you about getting hey a G tube. Another thing – everything you have heard all your life about a balanced diet for proper nutrition you can forget about. With a G-tube all you get is formula. It is a milk based formula with no Broccoli, spinach, hamburgers, salmon, walnuts, apples, Olive oil, multigrain bread, bananas, or any anything else.
MacSpeech had its flaws, but it was way better than this Apple Voice control. My apologies for the failures above.
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Hey Mike! Thanks for your feedback. Sorry you had such a terrible experience. Honestly I have a love/hate relationship with my feeding tube. I did want to point out though there are a lot of formula options out there these days. I use one called Real Food Blends and they use actual ingredients and come in a variety of “flavors.” You can even blend your own if that suits your needs.
Curious, did they close your stoma or find a better solution?
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Hi Kip. Sorry to hear your neck and swallowing muscles have weakened. I have a nasal tube. It bypasses my stomach and goes into my intestines. The reason for this is that my stomach wasn’t able to absorb any nutrients without me throwing up or getting severe gastrointestinal pain and not being able to eat. It’s probably part of the reason why I got so weak. I lost the majority to swallow within six weeks. It happened so so fast that my situation became very dire and I was hospitalized for a month.
I don’t have a permanent tube because of surgery/anesthesia risks. It’s an ongoing conversation I have with my doctors. I understand I will need one eventually but I still don’t feel physically ready. Nevertheless, I have made GREAT progress since getting my tube. I’m so far from where I was last year but still have a ways to go.
Hope this helps. Please don’t hesitate to ask me questions. I am happy to help to the best of my knowledge.
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