peg

Last Thursday I had a PEG or G-tube inserted. Procedure went well and it looks okay but very painful, especially when I move in certain ways. It was inserted because my breathing has become so compromised; therefore it will be dormant until needed. I underwent a "twilight" anesthesia but I...

hello, I have had a feeding tube now for about a week. I am strictly on the formula diet (i haven't tried pureeing Foods yet) and I haven't been able to control my bowels,. Everyday, sometimes twice a day I'm having accidents. Is this how it is going to be from now on? I feel trapped now like I...

Hello all. I'm currently using non-invasive Trilogy and Cough Assist devices, and I'm scheduled for PEG surgery on August 9. At my PEG consult yeterday, the doctor asked me if I had heard of diaphragm pacing system that's sometimes considered as non-invasive devices become less effective. My...

yes, you read it right! its app 3,5 years after onset and 10 months after diagnose. my ALSFRS-R is 39, neuro count in on 29.6. he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw. now is 18th day of using rilutek. after 15 days i...

Difference in "laboratory research only" products and products for comercial use since i am "not eligible" even to live, i guess that I AM eligible to chose how to die and how to spend my money. trial is on: ibudilast as a add-on to rilutek, double-blind, blahblah... decided to do it my way...

My wife has started choking more frequently — usually on liquids, but sometimes on grainy food. I don’t know what to do in theses cases. She continues to cough for a long time. We have used the cough assist with some success, but have not yet used the suction device. She gets a bit panicked and...

I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...

Hello All, My name is Meaghan, and my mom Nancy was officially diagnosed with ALS in December by the Cleveland Clinic. We've had a scary few weeks, with her going into the hospital May 1 (trouble breathing), and coming out with a trach, Trilogy, and PEG tube (and all that comes with that-...

Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource. My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his...

Good afternoon, I have a specific question which I'm hoping you can help me with. I've read many posts, etc. and sometimes they are "in line" and then sometimes you get a variation from what the mods and senior members post here so hopefully this will help me. First, I do understand that many...