Peg Surgery Tuesday July 17

[Syekick]

I don't need the PEG yet but want to stay ahead of the curve while my breathing is still adequate and my overall health is still good. Any suggestions on anything that may ease the recovery? Posture, sleep, food, or exercise on the recumbent bike? I imagine I'll be uncomfortable for a week or two.

 

[Bella77]

Hi, my husband got a peg tube June 18th and is doing real well, no pain after a couple days and the visiting nurse discharged him last week.

 

[sadiemae]

Just eat very light and bland foods for the first 48 hours. they told my husband to resume his normal diet, and he still can not eat meatloaf to this day. He was very hungry, and ate a lot, and the stomach pains were horrible.

 

[brooksea]

Just make sure you have an advocate with you when you have the procedure done, if it is inpatient. You can still talk (I read your previous posts), but your mobility is compromised and most nursin g pros/docs do not understand ALS (especially residents). You may need pain meds. Don't be afraid to ask for them. Make sure home health care is lined up to show you how to care for the PEG. And for God's sake USE the PEG after it is placed! The sooner the better!

I wish you good luck.

 

[Syekick]

Thanks brooksea. Yes, the wife will be going. She retired the end of June to spend time with me and is slowly taking over my needs. Poor woman! I lost 48 pounds March 11-March 12. Got down to the mid range for a man my size. 196 lbs, 6' 4". I've gained back 15 pounds since April. Guess I'll pack on the fat while I can!

 

[Bill Simpson]

I have had a PEG for over a year, aside from my time in the hospital, I never use it. My wife flushes it with distilled water on a regular basis. It's there if I should need it. I question the recumbent bicycle exercising, according to my neurologist and the doctors in the clinic, exercising is counterproductive as the exercise process is to break down tissues to rebuild stronger. ALS prevents the rebuilding of tissue so what you have broken down is now gone. They do however, express a need for stretching but not exercising. Most doctors/nurses/technicians are not accustomed to ALS patients and often offer counterproductive advice based on normal activities.

 

[tammyg]

The only problem my dad had was he could not PEE after the surgery. They had to put a cath in for a couple of hours, but after that he was fine. He did not have that much pain after at all. Good decision to get it sooner then wait. It will make life so much easier with everything,and your meds too. Makes eating faster and easier too.

I always remember someone told me that when the tube gets cloudy to put a little Coke A Cola in it it cleans it right up.

 

[pmbenb83]

My husband did not have the PEG tube placed, so I don't have any advice. I just wanted to wish you good luck with the surgery and hope you have a speedy recovery!

 

[cubcake]

Mine won't have the PEG either, but I wanted to congratulate you on your forward thinking and your willingness to make this as easy as possible on everyone, including yourself. I will be thinking of you and praying for an easy placement and speedy recovery.

 

[dragonflydi]

My husband had the PEG inserted over a year ago because of his low FVC but he still doesn't need to use it. My advice: if you cannot transfer to the hospital bed/gurney under your own power, bring your own transfer board. They had no transfer boards at the hospital (!) and there was no one available to lift him. We had to wait quite some time until they managed to find a big strong orderly to put him on the gurney. He had a pretty easy recovery and his only problem was granulation at the site of the stoma. After trying many different remedies, his gastroenterologist treated the site with silver nitrate and it eventually dried up. I now keep it at bay with zinc oxide. Diane

 

[Q-man]

My experience was an exception, not the normal, which i'll describe in a separate post. That being said, here are my comments. Before feeding, check the residual especially if you do bolis feeding. The nurses can show you how. Don't feed too much too fast. My gastro doc said to flush with cokecola or orange soda and then water when you are done feeding.
I took tylenol for about two days for pain.
You should have no problems.
Ed

 

[momap53]

Do a check of the archives for posts and photos from Rose about dealing with granulation tissue.

 

[Syekick]

Yes Bill, trying to exercise to build muscle isn't a good idea. I'm simply exercising my legs for about 5 mins a day in order to help pump the fluid build up around and increase the blood flow too. About as much exercise as when I could go into walmart and walk through the aisles and shop. Nothing more than that. It does seem to help me in that the foot color goes from pasty while to slightly pink and the foot/ankle/calf swelling decreases somewhat too. I think it helps my bowels too. So no tearing muscles to build them stronger for me, that's all behind me now.

 

[Syekick]

That would be pasty "white" not while, LOL.

 

[cervus]

Bob didn't have any pain at all. He also just used the peg for his meds initially. My advice would be to make sure the insertion site is kept clean and you are consistent with flushing the tube. We didn't used distilled water but rather just bottled water. I would also recommend range of motion exercises once you've healed. It's great that you're staying ahead of progression. Wishing you success and an event free procedure on the 17th. Take care. Yasmin.