THE TUBE

3_Putt said:

Don't fear the PEG tube. It was a life saver for me. I had it for 5 months. The only down side was hiding it under my shirt. Once I lost a some weight that wasn't a problem. Oh, and a couple of times I laughed or coughed when I had the end of the tube open and I shot stomach contents on to the ceiling It was funny as hell.

They're easy to use. I was given a bag to pour Nutrin in and then hang the bag. I tried that, but it was too much of a hassle and took too long. All I did was recline on the couch, put a large syringe, without the plunger, in the opening and then pour the food in. I'd follow that with 2 bottles of water and be done. It wouldn't take longer than 5 minutes. I did that every 4 hours.

You'll be surprised at how good you feel after some proper nutrition.

Tom

HAWVET said:

I did not experience the feeding tube. What is the reason for not eating? Is it swallowing problems or a lack of appetite? I lost a lot of weight (about 35 pounds). I also had lost my appetite. Although I had difficulty swallowing, I could still drink ensure or boost. Initially, I forced myself to a can a day and gradually progressed. Here's wishing you the very best. If the tube is your alternative, DO it. Your health is important in these difficult times. It will gradually pass.

jkinobay said:

Here are some comments I provided to another fellow cancer fighter several months back. You may find some of it useful. It is lengthy but hopefully useful. Remember everyone's experience is different. This was only mine.
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PEG TUBE 101:
During the day, if I am at home and at leisure, I don't wear tape to keep the tube secure. I just tuck it into my waistband. That saves tape rash, which by the way goes away quickly if I use Aloe Gel.

If I go to treatment or shopping or whatever, I have a 4" ACE bandage that I wrap 1 1/2 times around my stomach just above the tube entry point. I then tuck the tube up between the two layers of ACE and that also saves tape rash.

The only time I use tape is at night. I use a small piece to tape the end of the tube up in the middle of my chest so that I can sleep on either side or roll from side to side without worrying about it. Again, in the AM as soon as I have the tape off and a shower I put a little Aloe Gel on the tape site.


RIGHT AFTER PLACEMENT SURGERY:

In my case they did not give me anything for pain. I had been forwarned by support group members and had brought Vicodin with me. I asked the Doc if it was OK and he said sure. BUT, I had been fasting on food and water all night and they only had crackers so taking the Vicodin on an empty stomach caused my BP to crash and I passed out briefly in the car on the way home.

You may have soreness at the site for a few days so you will know to be prepared for that and I am sure you are. Mine was sore for 2-3 days.

TRACKING NUTRITION AND HYDRATION:

Keep on hand Pediatric Electrolyte (Walmart) and Gatorade. Periodically use them in place of plain water.

Get a spiral notebook and have two separate tracking sheets.........one for water, one for calories. The nutrionist at the hospital where the PEG will be placed should run a computer profile for you based on your health, bone structure and desired weight to maintain. From that you will have specific calorie and hydration requirements. On my sheet for calories, each day I put 2800 (my daily reqt.) at the top and as I intake supplement or eat by mouth, I subtract it so I know at any given time how much more I have to achieve. I try to get it done by early evening so by bedtime I am settled. For hydration, in my case I know I have to have minimum 64 oz. water per day, I shoot for 80. Same deal only I write the time for each hydration intake, trying to string it out somewhat evenly. (By the end of Rads I took 80+ oz. of 50-50 water/pedialyte each day and was still dehdrated and had to go to the clinic for rehydration).

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Other thoughts from several months back in a later email exchange with another fellow cancer fighter you may find helpful:

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****The first and last thing through the tube every use should be 2-4 oz. of clean filtered water.
***After the surgery she may have shoulder pain and bloating because they may inflate her stomach with air. If she does, when she gets home have her lay flat on her back and open the tube into a pan that is generally lower than her stomach due to gravity flow. Leave it open 2-3 times a day for about 30-45 minutes. This will accelerate expelling the air, reduce the bloating and the pressure on the diaphragm which as you know is sensitized by the Phrenic nerve which also serves the shoulder area. OTC Gas-X also helps.
***They gave me large 2 oz. catheter syringes which work great for intake. Pull the plunger and don't use it. If at all possible all fluids should be gravity flow. Pressurized may cause damage to the lining of the stomach. Use the syringe like a funnel. It only takes slightly longer and I'm not in a hurry anyway.
***The supplement I take via PEG is called IsoSource 1.5, similar to Jevity 1.5. Has all the right stuff supposedly, including fiber. To put it in I fill the funnel with water and start flow. When it gets half way in I start the supplement so that it is diluted. About every other 2 oz. I do the opposite and let the supplement run to 1/2 the syringe and add water to further dilute. It will go faster and for me causes much less sensation of pressure in the stomach during intake. She will burp sometimes during intake but that is fine.
***HYGIENE< HYGIENE< HYGIENE..............wash hands before and after each use. I close the clip valve and leave the plunger open and rinse it in hot water after each use too. Then I close the plunger and wash the exterior only with soap and water.
***Try to continue to take as much by mouth as possible. Keep the swallowing action active. Swallow at least one "something" each day (water, soup, etc.) no matter how difficult. Liquid Lydocaine may help as well as Roxicet Syrup. Swallowing also, helps clear the throat of potential bacteria. This is a biggie for me since I have very little saliva from radiation.

JK