Anyone With Peg Pointers??

My husband was diagnosed with SCC that was located in his right tonsil. They put in his PEG about a week ago, and after several days of no eating (because of the removal of the tonsil), his doctor told him to use the PEG when needed. It hasn't appeared to be very easy for him. Anyone have any pointers of how to use and live with this thing? My husband is only 45, and we have two very small children. So any advice would be greatly appreciated!!

Hello Winicki,

          I'm not sure as to exactly what you would like to know, so I'll explain what I did when I was sent home after my surgery. I had 1/3 of the base of my tongue removed, a tracheotomy plus the PEG tube.

          When I got home, I had a rack that had a bag which feed a can of Nutrin 1.5 into my PEG tube, which in turn took roughly 1 and a half hours to feed into my stomach. I needed roughly 8 cans a day which I figured would mean I would be sitting in a chair for 12 hours. Not going to happen in my opinion. I was given 2 syringes to flush the PEG tube after using the cans or to hydrate myself with water.

          What I did was,  use the gravity method of feeding myself with the syringe. I put the syringe ( with the plunger removed )  into the PEG tube and elevated it enough to be above the tube and would pour the Nutrin slowly into the syringe, . I paced it so the I could do one can every 10 minutes. 2 per feeding was good for me. Then I could go about other things. If he goes too fast, it might upset his stomach. I made sure everything that went into my stomach was at room temperature.

          As far as making sure the PEG tube stayed in place when it wasn't in use, I taped it to my chest. I shaved a good area around the PEG tube so that I wouldn't be pulling hair out each time I needed to use it. Keep the area around the PEG clean, clean at least twice a day. The cap on the end popped open once after a feeding and I lost some Nutrin. So after that, I would bend the tube at the end and wrap a rubber band around it so that even if the cap popped open again, it was kinked and I wouldn't leak out. The Doctor liked that idea.

          I hope this is of some help, if not, please ask what you want to know, there are allot of knowledgeable people here to help with questions,  they have been down this road already.

         My Best to everyone here

My husband is 40 with 4 small children and had a PEG put in 2 and a half weeks ago. Other than the pain at the site it has been wonderful as he has not been able to consume any food by mouth since his surgery on 5/6. I do all of his feedings as he can't seem to grasp the idea of feeding himself through a tube. I completely understand how he feels as we were both cooks in the restaurant business at one point and time. He was diagnosed on March  17 2008 with Squamous Cell Carcinoma and they found the primary in the right tonsil and that was removed on the 18 of March and then it had spread to several of the lympnodes and was at a stage 4. He then had a neck dissection on the 6 of May and had 7 teeth extracted today. He recieved 2 weeks of treatments of chemo and radiation before surgery as well as radiation during surgery. The radiation killed all of hid taste buds and he has not been able to consume much by mouth. The PEG is a way for him to get his nutrition and have energy to function and with three small children living with us he needs all he can. Feel free to email me with any questions at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

I used the syringes like Pop-pop did. I had problems "eating" that way too, I couldnt do more than a can and a half, though. My tube made me feel like I was full all the time, it was a real struggle ot take nourishment through it.

The hospital staff gave me an elastic and velcro "cummerbund" that I used to contain my tube when I wasnt using it...worked better than tape and I didnt have to shave my belly. See if you cant get one through your local pharmacy.

Other than keeping the insertion site clean and dry and flushing the tube regularly, I cant think of anything elsa to pass along.

Best wishes to you both.

Mike

You have gotten some great advice from experienced people, but you and your husband should have been taught by hospital personel how to use the tube. There should have been Q&A plus demonstration and return demonstration. Typically the an ostomy nurse and or dietician do the teaching. It sounds like you guys feel through the cracks---shame on them! Call your doctor and complain!!

DeniseB

I have had a PEG tube in for 5 months now, and got used to it fairly quickly. It is kind of weird, though. I try to get 3 cans in during the day (room temp.), but like Mike, I felt full and bloated for some reason, so my surgeon arranged for a pump machine so I could get 3 more cans in overnight. So far that has worked out beautifully. I clean around the area religiously with hydrogen peroxide and then fit a slitted gauze pad around it secured with tape. I bought a pill crusher so my meds, mixed with a little water, go in there too. You must remember to flush with water before and after each feeding. Other than that, it just takes getting used to, but a lifesaver for those of us whose throat is too sore/swollen to swallow properly. 

   Best Wishes, Becky  

we just got this cleaning tip from the nurse at radiation last week...my s.o. has sensitive skin and always had heat rash under the plastic disk that is close to the skin.  he was told to clean the area with maalox then apply a thin coating of the maalox and allow to dry completely- preferably in front of a fan.  the maalox provides a protective coating between the skin and the plastic...it did the trick!

he also felt way too full from the nutrin..he cant do more than one can at a time but he also adds a cup of gatorade to every feeding to keep his electrolytes up and add a few extra calories without feeling bloated.

~meesh

I have had the peg from the beginning 4/14 did not need it till 3rd week when taste and appetite where gone i do not know if i feel full or just do not feel hungry with regards to food. I have no appetite at all and this is very frustrating to me. I lived to EAT now it is a drag and I just try to do it to survive. I thought after treatments where over that the PEG would go quick does not look that way now eating is HARD!!

PEG:

i too use the gravity method which works well I use the Jevity 1.2 and try to put in 6 cans a day to supplement the little food that I can take through the mouth.

I wear a tee shirt now everyday and use a ladies hair clip to hold the peg tube to the shirt works very well and allows all the skin to breath.

i have ganuliation around the Peg site and the skin is very sore and bleeds a little I clean it with peroxide and put neosporian on it and the gauze. I feel I caused this problem because I did not stay up on my cleanings!!! 

I use the gravity method, like Pop-Pop.  I'd lay back on the couch and just pour it in.  I'd do two cans of 1.5 followed by two cups of water.  The whole process didn't take more than 5 minutes. I never felt full or bloated.  I'd do this four times a day.

When I was at home, I too used a "chip clip" and clipped the tube a tee shirt. When I went out, I'd wear a lanyard.  I fastened a rubber band to the end of it, then attached it to the end of the tube.  This held it in place and the rubber band let it give some if I accidentally pulled on it.  

At first it's a real pain, but after a few days, using the PEG and dealing with it becomes second nature.  Sure, you'll get sick of it and want it out as soon as you can, but overall it's really not that bad.

Tom 

My husband 50 – also with a young child –had the peg tube for throat / node cancer about a year ago all through his treatment.

 

First, I have to say that the PEG tube, and my hubbie’s hydration, nutrition and ability to make it through an intense treatment was never compromised, so we considered it a life saver, literally.

 

I will also note that my hubbie was so healthy when diagnosed – strong, in shape, good weight, athletic, etc., that he was told by almost every doc he saw that the chance of him have cancer was less than 1 %. When dx he was stage 3 b / 4.

 

He experienced trouble form the peg immediately. We were putting the liquid in to fast – we moved to gravity feed, too, but what really helped him was a hospital grade feeding pump, which we rented through the infusion center / oncology. No matter how much gravity feed we got done, it was never enough, so we’d pour three cans of nutrin with a cup of water into the bag / machine and it would pump over 10 hours while he slept at night. This was a lifesaver for us.

 

Other tips –

 

• Get glutimine for your hubbie.
• Make sure the site is always clean – my hubbie used hydradenperoxide (sp!)
• We always covered the site w/ a bandage before going in for long chemo session due to staff and other nasty things that seems to live in hospital settings.
• Flush the tube with water after each feeding.

 

Hope this helps –