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Okay so my dad has had a PEG Tube now for just over a month and a half. He's been dealing with unexplained weight loss and they’ve been doing everything they can to figure out what’s going on. So far, they have no idea why he’s losing so much weight. He’s down to skin and bones. And now to top it off the PEG Tube has been giving him a great deal of pain and discomfort. This is after they took him off the daily Bolus Feedings (my mom and home health has been giving him) and they put him on the Kangaroo Pump overnight so he could eat orally during the day. His pain has gotten worse and his geriatrics group recommended we back him down to 35 cc’s an hour and then slowly build him back up again. He wanted to drop to 50 cc’s and not the whole way to 35. His home health nurse said it was okay if we gave that a try. It doesn’t seem to have worked. So tonite we are putting him down to 35 cc’s and only two boxes of Isosource 1.5 instead of the three boxes he was originally on. All in all he is still in great discomfort. The Reglan and Zofran are doing nothing to give him comfort. He says his pain is at an 8 or a 9 and he is moaning in pain. The last tube feed ended around 10 today and he’s been moaning all day. He says it feels like his stomach is the size of his fist and someone is trying to fit a basketball in it. But he hasn’t eaten orally all day because of the discomfort. *Disclaimer: I don’t live with them and was out of town so I didn’t know this until recently.* I put a call out to his home health nursing association and have been waiting for what seems like forever on a call back. Just thought I’d come on here and see what advice you all had. His home health nurse has been aware of increasing discomfort and also said this could be an intolerance to the Isosource and that we may eventually have to try switching him to another brand. Also, he has COPD as well and his left lung happens to be the one that has to have fluid drained from the pleura from time to time, so I’m wondering if he needs to have that checked again and maybe the lung and stomach are putting pressure on each other? IDK. Any thoughts??

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The person who I helped with her tube eventually had some terrible pain issues as well. Imaging was done at the hospital and they discovered that the tube had become looped around itself and some organs. They went ahead and removed it. (They just pull it out through the hole - yikes!) She was okay afterward. She had stopped using it and was eating normally any way.

I agree. Get to the ER.
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I have had a feeding tube for the past three years due to failure to thrive. Now I won't say it is the easiest or most convenient way to get nutition but for some reason I can not swallow enough food to keep me alive.
Mine runs overnight on a pump so does not interupt daytime activities. There is about a foot of tubing hanging out of my belly and I do sometimes get spasms which can be quite painful. The tubes do tend to get blocked with the formula so it is very important to flush with water after a feed.
It is some thing that some one who is still competent can manage alone. The added benefits that medications can be crushed and given via the tube.

For someone with a life threatening illness i definitely would not recommend
placing a tube
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How old is Dad? When you say "nurse" do you mean an LPN or RN?Because too many people call CNAs nurses and they aren't. They have no medical training. Is Dad on Hospice, if so he should not be in pain at all. Hospice is all for comfort. I agree, get him to ER.

You don't say how old Dad is. But there comes a time when a feeding tube should not be considered. Dad may have been losing weight because his body is shutting down. No amount of feeding is going to help but it will bring discomfort.
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Having very little experiencing wiht tube feeding, all I know is that it is NOT supposed to cause pain. Something's blocked, or perhaps his digestive system is shutting down and all the liquid just goes into his stomach and is not moving through appropriately. Or yes, the lung that gets filled with fluid can be pressing on his stomach.

I have a "no tube feeding" declaration b/c I have heard of this happening so often. Continuing the peg feeding is his choice (or your family's) and should probably be evaluated right now. Don't wait for the weekend, get him to the ER, immediately.

How awful, to have that in and have horrible pain. No QOL at all.

Good Luck.
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I feel Peg tubes only prolong a person's suffering.
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shad250 Sep 2018
In some instances they can be of help.
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Seek immediate medical help. Complications from feeding tubes are not uncommon.
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