I told the nurse that the feeding tube seems to be the worse part of this whole treatment (he's on treatment 27/35 of radiation, last chemo today) and he shook his head yes...it has caused him pain from day 1 and is still such an issue that he puts lidocaine around the tube when he has to put liquids in. The problem is, 1/4 of the liquid is coming back out each time. He has lost 60 lbs in 6 weeks so they are keeping him until the weekend. Definitely a good idea.

He wanted them to remove the tube and they said, sorry but you are going to be using that feeding tube for 2-4 more months so we cannot remove it and look at how much weight you have lost.

Any thoughts on this or experience? He said his chemo doc adjusted it today and asked me if he should spend the money on this other doc to look at it. I told him that it's his choice. He hasn't responded back to me as he tends to not communicate well. We live an hour away so I'm not right there to hear what's going on. I will probably be going up to take him some more clothes in the next day or so as this stay was unexpected.

I know Christine will have words to say on this! She warned about this happening!

Oh dear, he should have spoken up sooner about the pain. The first few days may be pain from the procedure of inserting the tube. Now, it may be granulation. It’s good that he’s in hospital and maybe the doctors will be able to figure out what’s causing the pain.

still no updates from husband. grrrr. anyway, he does have something going on that I can't remember the name of but it's like a growth forming around the tube. With 60 lbs lost, the tube was sticking quite a ways from his stomach. He won't wear anything to keep it in place. I tell you he is a stubborn one! I let the nurses and doctors lecture him but he still rarely listens to them until he gets in trouble. Glad he's in the hospital for a few days so they either talk some sense into him about a few things and/or figure out these issues finally. The feeding tube thing has been a mystery to them but it just won't quit bothering him nor stop leaking.

Mine had to be replaced at one point because of it causing pain ... it wasn't quite in place anymore or something. I didn't deal with granulation till it was removed (and then it took a couple different doctors till I got one to take it seriously as a problem, which I now know from here was bad care on their part). I don't recall it ever leaking ... definitely something not right there.

Hope they help hime and at least get the pain under control.

something is seriously wrong with that tube if he is having this much trouble with it. When he does a feeding, it should NOT leak back out. The placement must be off, its become dislodged and/or the balloon deflated are what comes to mind when I read your posts. Sounds like he also has granulation around the site which can hurt like heck!!! Does your husband use the drain sponges to absorb any leaks? If so and he is not changing them when they get wet he could be causing even bigger problems by having an infection. Patients who have feeding tubes must use caution and not do everything they always had done, especially lifting anything over 20 pounds. Im looking forward to seeing your update about whats going on.

Best wishes to you both!!!

as usual, he's trying to control things by not updating me. I texted last night (he has no voice left) as to what's going on. Silence. I'm so glad the nurses are having to deal with him for a few days as he fights them and me every step of the way. I needed a break!

I wish I could remember the name of what he has around the feeding tube...granulation is not the word they used. it was 2 words and referring to a growth that has developed. they said it's unusual but they have seen it before. it is quite painful. so maybe it's what you are referring to and they just used another name for it, I'm not sure. ETA I just googled feeding tubes and could not find any words that sounded familiar so I"m going with granulation!

The nutritionist and nurse have told him to do gravity feedings and he refuses (why???...oh because it wasn't his idea I guess). My daughter has watched him put food into the tube and she said he pushes it in so fast that's it's not surprising it is coming back out.

I will update when he decides on his own to communicate. I won't ask again because i refuse to play his games. Lots of other people are getting to see the controlling behavior so now I know it's not just me he does it to. It's his loss.

He is still refusing to give me the password to see our insurance coverage. What is he hiding? Probably nothing...just controlling. I finally found an old plan and think it is probably going to be the same. I thought this illness might humble him or bring about some good changes...seems all the old stuff is ramped up and intense since I have to deal with him so much these days.

thanks for the comments Kristen, gmcraft and Christine. It is appreciated.

Husband was released last night after a 3 day stay at the hospital. I asked today if they fixed his feeding tube. He said yes but he got upset as they took him to a new room to do this??? somethings he says to me make no sense but since he has little voice, I let it go. They did replace the feeding tube and he said it works correctly now. He said they told him what was wrong but he didn't understand it. Down to 4 rad appts and chemo is over.

My allergies were 100% gone yesterday...now that he is home and after driving him to radiation for 2 hours today, darn it, my eyes are matting shuts, I'm congested and itching like crazy. What in the world am I allergic to when being anywhere near him? I cannot figure out anything other than chemicals in his body affecting me. Complete mystery I will probably never solve.

He has 4 radiation appts left so this feeding tube thing has been a problem for 7 weeks now.

Your husband must be doing better if he has been sent home. Im very glad to hear he's home! Being trapped in the hospital is horrible for all patients, especially near the end of treatments where patients really feel terrible.

If your husbands feeding tube has been replaced there should be no further issues with it, at least I hope there isnt. Im pretty sure you said he had a PEG tube. That type of tube is surgically placed and if it was being replaced it would have been done so surgically thru out patient radiology dept--- not the same dept as getting radiation treatments. Other types of tubes may be replaced differently. It could have simply been the balloon was not inflated correctly which would be a very simple fix to inflate it, not needing surgery or the OR. In the whole scheme of things, this is the last thing anyone needs to be concerned about! I hope everything will go smoothly for the next few weeks until one day he will wake up feeling a little less crappy and more like his regular self... thats is called "crawling out of the tunnel". All of us patients strive to reach that turning point.

Best wishes with everything!!!

thanks Christine!

Funny thing is, he has yet to complain about the sore throat or any of that. It's been the oddest thing if you ask me as it's nothing like they told him it would be...100 times a sunburn in your throat. He says lemon flavored things are scratchy but not much else. He just started taking pain medication last week.