My husband just went through a couple of bad weeks with his Mic-Key type feeding tube. Was experiencing pain and some other issues, and was just given an antibiotic.
Trip to the ER, finally they did an endoscope and discovered that it was completely imbedded.
Anyway, it has now been removed. Doctors (and I) wanted to insert NG tube until they can do another PEG tube in a couple of weeks, when his stomach has had a chance to heal. He is dead set against it....insisting he can try to eat. Eating/drinking is as bad as ever - lucky to get 200 calories in by mouth each day and very little water.
Anybody had the NG tube and can give me something to offer my husband. Hoping that it is not as bad as he imagines and I can convince him to get it inserted ASAP.

Thanks for any help.

From my understanding the NG tube is very easy to use. It can be removed or inserted by the patient or caregiver. One of our former admin used the NG tube. Its meant for short term use. The link below has tons of info about feeding tubes, formulas, and tips.

Main OCF pages--- feeding tubes

If a patient is only taking in 200 calories daily then that is not enough to sustain him. Its not even a quarter of what his daily intake should be. When skimping on intake it can only lead to some major problems. Eventually his body will struggle and he will start feeling horrible from malnutrition and dehydration. If I remember correctly, a person can go 2 weeks without food but only a few days without water. Your husband can always get hydrated at the hospital. A few bags of IV will help him to bounce back. But... if he is continuing to only take in very limited fluids dehydration will eventually catch up to him and he will feel lousy.

Hopefully your husband will agree to get the NG tube. If he skimps with fluids and calories daily its only a matter of time before his physician orders a feeding tube anyway. Better to get one before there is a problem with his health.

Best wishes!

I've had the NG tube many a time. It's a very easy way to take in nutrition. Not nice going in but skilled nurses can insert it almost without you noticing. It's not uncomfortable once it's inserted. Your husband will feel a sense of relief once it is in and he is getting the nutrition he needs. He will still be able to sip water and so on.

Best wishes.

Can't say I know how it felt when it was being inserted, as I was still asleep from the surgery. But it was not uncomfortable while it was in and being used, nor was it uncomfortable when they were taking it out.

If I were to imagine what it felt like going in, well, it's probably quite similar to when the doctor puts the endoscope down your nose.

Thanks for the replies.
I ended up bringing him to the emergency room yesterday.
He has aspiration pneumonia (again). Very frustrating because the hospital doctors are now refusing to put the feeding tube in....concentrating on other issues like elevated heart enzymes, etc. Meanwhile he hasn't had any nutrition since Wednesday night. He was painfully thin before this latest incident.

Anita,

Has you husband had a swallowing test to determine if he can swallow safely? If he keeps on getting aspiration pneumonia, he may be having silent aspiration, where he aspirates but does not know or react to the aspiration. Try to get the doctors to send in a speech and language pathologist, she/he can suggest special techniques for swallowing to minimize the chances of aspiration. This is important, please make sure you get to the bottom of it.

he's been through the barrium swallow tests (2) and has had extensive swallowint therapy....but the swallowing just gets worse and worse. He has had a PEG tube for 2 years now, but continued to eat and drink a little (very little). Could be getting the aspiration pneumonia from that or from the PEG tube feeding....PEG tubes can cause aspiration pneumonia, too.

They finally inserted the NG tube this morning (it took them every EKG, CT scan, Ultrasound, blood test know to man to finally bring them around to deciding the elevated heart enzymes, etc are due to the pneumonia and malnutrition).

Anyway, he hates the NG tube. Says it hurts his nose like crazy. Does that go away with some time?

My husband had an NG tube when he was in hospital for pneumonia in October. He did not complain about discomfort. It was only a problem because the nurses couldn't just insert it because of the narrow passage down the nose to the throat (another side effect of radiation) and he had to be sedated and sent to endoscopy to get it done. Swallowing for him deteriorated over time. Within six months, he went from being able to swallow liquids to aspirating on them. The speech path said even his saliva could go down the wrong way and, over time, it would catch him with him and he would get another bout of pneumonia. I am concerned for your husband because my husband ended up getting pneumonia pretty well non-stop for half a year. Please be vigilant, especially if he gets a temperature or experiences chills and coughs.

I think it will go away - the NG tube pain. I didn't really feel it unless I accidentally pulled on it. I wonder if some sedation or relaxation exercises would help him. When you are tense (and I'm often the worst culprit) everything hurts more.

Best wishes.

NG tube pain has eased up. And he'll get a new PEG tube in a week - so that's good.
Gloria, what you say hits home. I have seen the swallowing get steadily worse and the aspiration pneumonia come again and again. Have to wonder how many times a body can take it. Even stopping eating and drinking completely may not help - tube feeding puts patients at risk for aspiration pneumonia, too.

I wonder why some patients have such swallowing woes 10 or so years out from radiation and some don't. We have a friend that had his same diagnosis and very similar treatment, but has little or no swallowing difficulty.

I appreciate all the feedback. Thanks.
Anita

Also meant to give you my condolences for your husband's recent passing, Gloria.

Dear Anita, thanks for your kind thoughts. I hope things will start to look up for the two of you once the PEG is back in.

I had an NG before inserting a PEG tube my first and second fight (Ten years ago). I remember the NG not so much hurting (In my mind at the time I was saying that it burned, etc.), but I believe in hindsight it was just something new to me and took an adjustment period. As far as your question we can all walk the same path but our footsteps land differently, if that makes sense. It is really strange how these miracles we call bodies act and react so much differently to the same treatments but that's just how we are built. I quit thinking about that and focus now on how I can best adapt to work with my body instead of against it. Sounds like your husband gets that which is a win! Prayers and all my best!

Last Friday the new PEG tube was successfully installed.
So now back to the battle to try to put on some weight. And recover from the pneumonia.
But I know, now, that it is going to be a continual cycle....this aspiration pneumonia.

Sometimes I think to contact his radiation oncologist from 10+ years ago...who I loved. I wonder if he (and others in his field) even know how patients are suffering down the line from the treatment.

Anita,
I have been mentioning the devastating long term effects to every doctor that my husband sees, including his Radiation Oncologist. I want them to be aware of what these patients go through. They say they know, but they don't live with it on a daily basis. Evidently, this is due to more survivors with current tx. options and HPV-positive tumors.

I also have recently noticed less smooth swallowing. Our immediate issue now is early stage ORN.

I am frustrated that there is no longer a team or physician in charge. We are left on our own to figure out what to do and whom to contact.

Lottie

Lottie,
Good point about the lack of a physician in charge of post treatment issues. GPs are in no position to deal with the complicated issues.

When my husband had his last appointment with his ENT and Radiation Oncologist (I think it was at 2 years out from treatment) I asked them if there was anything to be aware of as time went on. The RO said the only thing was an increased incidence of lymphoma at 10 years out from treatment. That's it.

Lottie and Anita,

I agree fully with what you are saying. In addition to the swallowing difficulties, John was starting to lose his hearing, as well, he struggled with postural hypotension, not to mention the dental problems that were starting to manifest themselves. The only solution we were given for the swallowing problems was to put him on a feeding tube for life, which, of course, given his efforts in getting his esophagus opened, John fought back and would not accept it. As for the hypotension, he was prescribed steroids for a while but that did not help. What's hard was the steroids had long term side effects of their own. It seems to me that when it comes to late onset side effects, we are dealing with, at best, a patchwork approach.

No member of my "team" understood post-treatment issues. And seeing some them afterward (one by one) was of little to no help. In this world of specialists, I guess we need one more, which would be a doctor who specializes understanding post-treatment issues and how to handle them.

Regarding postural hypotension, I assume you were given Florinef. There are other medications, and this is all best handled by a cardiologist. Because the first thing to try is graduated support hose (via prescription). There are also drugs like Midodrine and Desmopressin. Neither of which should be prescribed trivially.

What I ended up doing (with my cardiologists blessings) is adding sea-salt to a pitcher of water. One teaspoon per 2 liters. And monitoring my blood pressure (lying, sitting, standing) twice a day. I became worried that my blood pressure was getting too high, so now I only do this in the first pitcher of the day. I'd go back to the cardiologist again, but other illnesses keep taking priority. Eventually, though. Because this is helping very little, and near-syncope is no fun at all.

Andrew, it was suggested to John to dissolve half a chicken broth cube in water and drink it once or twice a day if his blood pressure got too low. It worked for a while but over the long term, it wasn't that helpful. My biggest fear was John falling when his blood pressure got too low. With all the chemo and radiation, it would be very hard for any broken bones to heal. Unfortunately, it did happen and it brought back the pneumonia.

You're right, he was on Florinef.

I passed my swallowing test, at least at the time it was given (8 years ago). But I've actually felt myself start to inhale food. What I noticed is I have to be very attentive while eating, because unless I use water to assist in swallowing food, the food sometimes just stays on the back of my tongue and doesn't go down.