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Experience With Feeding Tube
While extremely weak with MG, I once had to use a feeding tube. I was in the hospital and was too weak to chew or swallow food, no matter how soft it was. The process of inserting a feeding tube was harrowing but I was grateful there was a way for me to get some nutrients in me.
Have you had a feeding tube? What was the experience like? What would you tell someone who may have to be on one?
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4 Replies
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Yes I had one too when in crisis and lost all throat muscle function. Like you, having the tube put in isn’t the most fun thing I’ve done! But as you say, getting nutrients in is important in the fight to strengthen and get past the crisis. That said, I still feel bad for the poor young therapist who was assigned to try my first drink. I immediately choked on a sip of water resulting in a code blue and multiple medical personnel in my room within a minute. Poor guy avoided me for the rest of my hospital stint.
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The most extreme of my symptoms was the near complete inability to swallow. Before I was stabilized all four times I was in the hospital I required a feeding tube. The first time they used a full size tube. I thought I was going to die while they were getting it in. It was perhaps the most horrible experience of my life. The other times while hospitalized they used an ng tube which was much thinner. That was uncomfortable to insert but no where near the agony of the full tube. No type of mitigation was used. Each time I had the tube for the better part of a week for nourishment and administration of medicines. The ng tube is more comfortable but because of its narrowness can become kinked. In that case the old tube must be pulled out and a new one inserted. More disturbing than anything about an exacerbation is the prospect of having a feeding tube inserted.
Due to my experience I would probably not tell anyone anything less that anticipation make it worse. If you are in the hospital you have enough to worry about without worrying about an upcoming uncomfortable procedure.
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I’ve had experience with feeding tubes, ng tubes, and central line nutrition.
Central line nutrition is far and away the most expensive and was used only when a crash was so severe that the hospital stay and recovery looked to extend for weeks. Although intrusive it is easy to live with and allowed me to work with speech therapy to restore my speaking, chewing, and swallowing.
NG tubes were, for me, easier to onboard and much less intrusive day-to-day and allow speech to happen so much easier! as to worrying about the trauma of insertion I can only say, it happens quickly and so take solace in that.
Feeding tubes are truly intrusive for me as a patient. It’s so hard to talk, makes my gag reflex happen on an hourly basis and is an awful experience if it happens again and again if they are not “left in” for days at a time.
In the end, I would say to face any of these options as bravely as you can with the hope that it is part of getting you out of crisis. If you have the choice, I would choose an ng tube first and as part of your healthcare plan make this option known to family and your healthcare team.
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This post is scary but informational. But my son is a nurse and he says when doctors order the feeding tubes they never stay for the insertion because it’s so bad. Make the nurses do it.
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