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Questions about j tubes

Bluestar04
Posts: 8
Joined: Mar 2012

I am hoping to get some advice regarding j tubes. I have never heard mention of this from any of the doctors my dad has seen over this past year, but I keep reading about them here. At this point, dad is 2 weeks out from 20 whole brain rad treatments. He was hospitalized 3 weeks ago with pneumonia, and has been home for 2 weeks. My family is now living with him as he cannot do anything for himself, at least not what he would need to be able to do to safely live alone. The pneumonia has cleared up, but whether because of the radiation, the brain tumors, the tumor on his esophagus, or a combination of all those, he has extreme fatigue and weakness and zero appetite. He forces himself to eat, and since I'm the one making his food, I try and make sure it is calorie dense. But he keeps losing weight, seemingly regardless of how much he eats. I don't know how much more weight he can lose. The doctor seemed concerned, but only told me to let him eat whatever he wants, blood sugar levels be damned. (Not really, he is on meds for that as well, but they'd rather see him eat than not.) So I guess my question is, should I be lobbying for a j tube? How does all that work?

BMGky
Posts: 666
Joined: May 2010

While I am a big fan of j-tubes, your father's condition seems quite delicate. Surely, his oncologist will give you some information. My husband got to where he could have nothing by mouth for over 5 months. The radiation zapped him. The jtube made it possible for him to complete treatment and surgery. Hopefully, some of our "pros" will be checking in soon with some suggestions. Our best to you BMGky

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I also am a big fan of feeding tubes. My husband was unable to eat for months, and the doctors kept denying giving him one. Finally they relented, and placed a GJ tube. It was great, and his energy, mood and well being increased drastically.

We truly had to bully, beg and threaten our doctors to get one put in. I think often stage ivs are denied feeding tubes. I won't speculate the reasons for this, but it seems to be a theme here.

Try asking the doctor for one, and make sure you have done your own research, so you can state your case and not take no for an answer.

good luck
Chantal
wife of Lee, deceased Nov 8, 2012

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I also have positive things to say about the J Tube. My mom had one placed in January of this year, and has not lost any weight since it was placed. It allows her to get nutrition, hydration, and you can also use it for meds. It is smaller than the stomach tube, and she has adapted to it well. The tube attaches to a pump that runs at night while she sleeps. If you ask the doctors for it and you have an option, I would ask for the J tube versus the G tube or stomach tube. You may have to fight for it, as Chantal says, it is harder to get at stage iv. My mom got it when the docs thought her to be a stage 3 in preparation for radiation, which would have inflamed her esophagus and made it difficult to eat normally. Once she was determined stage iv, we kept it in and are thankful to have it.
I also wish you luck!
Stephanie

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