I opted for a feeding tube well before I needed it. The interventional radiology approach seems to be preferable to the older PEG procedure. It was a simple outpatient procedure that worked well for me. I have heard horror stories about PEGs that ended up in the wrong places (e.g. the small intestine). I was told that I had to have the procedure done before my lung function dropped to 50% forced vital capacity (FVC). I’ve had the tube almost 2 years and am still eating soft foods. The tube is a great help in hydration. I also take some of my meds through the tube. It is important if you don’t use the tube regularly to flush it daily with a syringe. It’s important to flush it with water after each use. I have gotten conflicting advice about the frequency of changing the tube; some say every 6 months, others say whenever it malfunctions. I’ve had it changed 2 times in almost 2 years. The first time because the inflatable bulb inside burst.
I started out with what is called a G-J tube, as recommended by my gastroenterologist. He was concerned that later in the disease I might have acid reflux which could lead to aspiration. When they do the procedure they insert both G and J tubes in the stomach, then feed the J tube down into the jejunum. I haven’t had much acid reflux so with the last replacement I opted to have just a G tube. I’d love to hear from others about their experience with the J tube. I heard from one MD that it takes longer to feed through the J tube because the jejunum is smaller than the stomach. I was also told that an RN could do the replacement of a G tube. I’m glad I had my replacement done in the hospital because there were complications.
As I proceed through the list of things that I can no longer eat by mouth (peanuts, dry cereal, steak), I have surprisingly few regrets. I love good wine and a cold beer and still drink them. I will miss them greatly when I can no longer drink them orally, but I can put them through the tube…it’s a shame my stomach doesn’t have taste buds!
As always I’m interested in others sharing stories with best practices!
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4 comments:
Tony, you're doing good things with this page... I went today for a peg consult. The doc said my swallow test showed no imanent need for one. (Giggle)I said have you heard of als? He never heard of a mic-key or the radiology approach... He's fired, and I know more what to ask for before an appointment is made. Keep up the good work... you pal, Dennis Neville
Here's another perspective. I've had my g-tube for 6 years. It was placed under conscious sedation 3 weeks AFTER I got the trach and ventilator. So whoever tells you this can't be done is full of ****. About changing my g-tube, I change it only when the balloon bursts which is about every 2-3 months. My caregivers change it (CNAs, LPNs). It's a very simple procedure plus I've written up the insertion steps which I keep in my resource book. I have never had problems with it in all these years. My only regret is that I waited so long.
Good luck!
Sandy
Just a quick comment: You are very brave. and, don't get drunk on the wine and scare your nurses.
Insurance will cover a new G tube quarterly. I have it done by the nurse from my enteral-care provider. (She's also a member of my Walk to D'Feet ALS team!)
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