Feb 08, 2008 - 2:25 pm
FIRST AND MOST IMPORTANT, if your Docs want you to have a PEG placed DO IT and do it early on. If you wait until it is critically needed your health and soreness may be an issue. So, put it in with the goal of never using it but the comfort of knowing it is there if you do need it.
I have been asked for tips on the use and care of the PEG. From my recent experience I was very dissappointed in how little information we got from the medical team that placed the tube. So, and I realize you didn't ask so this may be old-school for many of you, but here are my observations and things I have passed on to new friends going through this:
During the day, if I was at home and at leisure, I didn't wear tape to keep the tube secure. I just tucked it into my waistband. That saves tape rash, which by the way goes away quickly if I use Aloe Gel.
When I went to treatment or shopping or whatever, I used a 4" ACE bandage that I wrapped 1 1/2 times around my stomach just above the tube entry point. I then tucked the tube up between the two layers of ACE and that also saves tape rash.
The only time I used tape was at night. I use a small piece to tape the end of the tube up in the middle of my chest so that I could sleep on either side or roll from side to side without worrying about it. Again, in the AM as soon as I took the tape off and had a shower I put a little Aloe Gel on the tape site. By the 2nd or 3rd day after placement you will hardly realize it is there.
RIGHT AFTER PLACEMENT SURGERY:
In my case they did not give me anything for pain after the surgery and it was about an hour and1/2 trip home. 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 from all 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 in the car on the way home. Be sure to bring some form of hydration and nutrition to take with the medicine if you use it. You will likely have soreness at the site for a few days so be prepared for that.
Post placement pain- In my case I experienced some bloating and pain because they inflated my stomach with air. This puts pressure on the Phrenic nerve which serves the diaphragm muscle group. The Phrenic is also connected to your shoulder muscles so the pain you may feel in your shoulders is likely coming from your diaphragm area due to the air pressure. TWO THINGS that helped to dissipate the air and reduce the pain: 1) GAS-X, OTC med and 2)ly flat on your back and put the tube in a pan situated lower than your stomach for gravity flow and open the valve to the air for 30-45 minutes, 3 or 4 times a day. This helped me tremendously to "burp" the air out much quicker. I also took Extra Strength Tylenol which helped.
TRACKING NUTRITION AND HYDRATION:
Keep on hand Pediatric Electrolyte (Walmart) and Gatorade. Periodically use them in place of plain water. I used about 50-50 of each and it did very well. You will not believe how much Radiation dehydrates you. At 200 pounds and even at 64-80 oz./day of water/Pedialyte I periodically had to go to the chemo clinic for rehydration. Don't gamble, go in for hydrates. It will make a huge difference in your energy and attitude.
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 weight and 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 the caloric value so I know at any given time how much more I have to achieve. I tried to get it done by early evening so by bedtime I am settled. For hydration, in my case I know I had to have minimum 64 oz. water per day, I shot for 80. Same deal only I write the time for each hydration intake, trying to string it out somewhat evenly. I also used this sheet to record medicine taken, mouthwash used, etc. It helped me stay on top of the overall regimen.
For cleaning the PEG site, on Day 2 after PEG placement it was OK to stand in the shower and gently clean the area. Once dry I put Neosporin on it twice a day. I never had a problem with redness or infection.
As for using the PEG, you should sit as vertical as possible during intake and for at least 30 minutes afterward. Intake fluids for me were best at room temp. May be different for you.
Periodically I moved the clip/valve up or down the tube to keep from clamping in the same place all the time causing fatigue to the tube.They are designed to last at least 2 years I think but I am an engineer and I worry about maintenance.
PEG Removal- Yes, that glorious day will come and you will likely be pleasantly surprised at how easily and painlessly it comes out. In my case it was done in the Doc's office, he put his fingers on either side of it, pressing gently against my abdomen, told me to take a deep breath and count to "3" but he jerked it on "1". Stung like a bee sting for less than 30 seconds, then nothing. That night I woke up with a bruised-like feeling, took Ibuprofen, went back to sleep and never felt it again. The hole closed within 8 hours too.
Hope this helps at least one newcomer. You experienced CSN'rs, please comment/edit where you think it needs it. Feel free to ask questions. I am an OCD kind of guy who took notes, did a lot of research, and would love to share it with you. Be well, stay well...............JK