PEG Tube- Need tips

Listen to the docs! My husband & I took the wait and see approach, and it backfired. He got to the point of dehydration (5 day hospital stay) and a two week delay in getting the tube in because his white blood cell count was too low. They refused to do the procedure at that point. Finally, WBC count was up with meds & they inserted the tube, but not before he was forced to take IV nutrition through his veins twenty hours a day for about three weeks. George lost about 25 lbs. He was not overweight to begin with. Everyone is different, but as a precaution you probably should get one. George's peg tube is easy maintenance as far as cleaning. At first I did it for him, but now he does it himself. He can also hook it up for a feeding on his own now. As far as the procedure, there was pain for a few days following. He was given heavy meds (Morphine and others). He was in the hospital for two days. He got used to it quickly. It doesn't interfere with eating normally. If you can, eat and drink as much as possible. He had no appetite and everything tasted either like metal or cardboard. He has had the tube since 03/07 and still uses it daily, although he is tired of it as you can imagine. He would much rather be eating enough, but after the bilateral neck dissection, eating became more difficult. It was improving after he finished with radiation and chemo. The surgery was definitely a setback. Bottom line: it is a life saver.

Best of luck to you JK,

George42's Honey

Peg tube was a lifesaver. It didn't hurt to be put in at all. It was a little weird getting used to. You suddenly have this thing hanging down from your stomach. I tucked my tube up into my cleavage/bra. Only once did it come open. Looked like I was nursing and leaked. Anyway. It probably saved me. By the second week of radiation I didn't want to even eat or drink. Once the tastebuds go it feels pointless. Just make sure to keep the tube flushed after using. And also make sure to use the alcohol wipes around the opening to the tube to avoid infection at first. I did but still developed some redness. After six months I was able to have the peg pulled and was really worried how that would feel. It was painless. Didn't even realize the nurse was done when she pulled it.

If you can still eat and drink during treatment, do so. But if the time comes when or if you are unable. You will be thankful you have that peg tube. It helps you keep up your strength and get the nutrition you need to battle the effects of radiation and chemo. Good luck to you! Stay strong!

Highly Suggested!
It saved my husbands life. He finished rads 2 weeks ago and has not been able to eat for 43 days now. Everything tastes like metal he says. Still tube feeding and we both can't wait till he can eat again:-)

donnahamblin said:

Highly Suggested!
It saved my husbands life. He finished rads 2 weeks ago and has not been able to eat for 43 days now. Everything tastes like metal he says. Still tube feeding and we both can't wait till he can eat again:-)

How long before your husband was able to eat

Hi my husband finished all of his treatment 4 weeks ago.  Still has a problem swallowing water.  Just wondering how long it will take before he will be able to take food by mouth.  I know everyone is different, but haven't seen any post with any time frames.  He is still very tired and sleeps  a lot.  I know it takes time, just want to see little steps.  I keep pushing him (thinking I'm helping), but maybe I should just let him go at his own speed.  He had complications, was in the hospital for 3 weeks.  Had to have the feeding tube replaced 3 times.  So it could be part of the slow recovery.  Still has a very dry mouth, even with all the mouth rinses.  And the mucus, when does that go away.

Eating difficulty

My treatment involved rad and chemo, but no surgery. I did not have a PEG tube, but do have a port. When I started to become dehydrated, I went to the cancer center and they gave me fluids through the port.  It is still hard for me to eat three months after treatment ended. I had acupuncture to help save my salivary gland function and never lost my sense of taste. Mostly there is a sore throat and incomplete swallowing where I need to swallow a second time with a sip of water in order to get the rest of the food down. Swallowing therapy has helped. When I finished my treatment, the staff said most people start to feel better in 4-6 weeks. The key word is "start"! Recovery takes a long time. Be patient with yourself.

MrsBD said:

A couple more things

After reading your post again, there are two more things I'd like to add. The mucus stage is sooo annoying. It is finally getting better for me. Ask if you can use Mucinex at night. It helps. As far as sleeping, I probably slept 18 hours a day at one point. The doctor said it was normal and that sleep helps the body repair itself.

They put my peg in during

They put my peg in during surgery.Doctor felt better safe then sorry if I needed which I did during treatments.Never really bothered me much.It was pinned to my shirt at first then went onto amazon and bought a pouch for it.It wrapped around your stomach and the tube slipped inside it.Was very convenate even at work.I kept the tube until after my pet scan and the doctor pullled it out in his office.Alittle twitch but nothing to it.He wanted to check the first scan plus I had to start eating from the mouth and gain weight before he would pull it.But was glad that it was in to keep fluids in me for the time of treatments.

I had HBOT but did not have a PEG tube at the time. I did have to go to my ENT to get my one ear cleaned out and that made the treatment much nicer.

I checked on the internet and can't find anything specific. I would just call a hyperbaric center and ask them. Interesting to know the answer I can't imagine putting a PEG tube under pressure would make it flammable and self-combust but I can't say for sure. But they do give us a plastic water bottle when we go in and that is considered safe.

Take Care God Bless-Russ

Merry Christmas