Living with a PUG (Feeding Tube)

[ahibnick]

Living with a PEG (Feeding Tube)

I have ALS which has affected my speaking and eating. I have scheduled a PEG for next month. I have been putting off as long as I can. I have good days and bad days for eating and drinking. Some days it is hard to just drink water and I choke on it. Other then not being able to speak, I have been able to do most of what I did before. I still am working 40 to 50 hours a week, and work around the house and take care of the yard work.
I am wondering how my everyday life will be different with the feeding tube. Will it cause me be uncomfortable while sleeping? Will I feel the tape and the tube as I walk or on a hot day? How hard is to regulate your intake when you still are able to eat some foods? I am not looking forward to this change, but am looking forward to not having to worry if I am going to able to drink enough fluids.

 

[Al]

Hi there. I don't have a PEG myself but there are others on here that do. I'm sure they'll offer advice but in the meantime you can use the search feature and type in feeding tube or PEG and se what has been written about before. From what I've seen here the tube can be felt at first but after a short time you can get the button type that supposedly doesn't show under clothes and is more comfortable. My friend had one last year for about 6 months while getting treated for throat cancer and never mentioned any of the problems that you have asked about. I'd like to welcome you to our forum but am sorry that you have to be here. Take care. AL.

 

[slkfocus]

Hi there
I do am contemplating getting a feeding tube. I can still eat as long as its heavy food and drink heavy drinks. My dietician said not to drink water or "thin drinks" since they are easier to swallow into the wrong pipe. She also suggessted a thickening agent that makes your drink thicker and easier to swallow.
I am scared about the PUG too but my weight loss is getting worse and I Know I need something. I too am still working 40 hours a week and doing things around the house.
Sharon

 

[ronney525]

hi, i've had my tube over a year now. most inconvenient part was waiting for the wound to heal. i have had no difficulty with it showing through my clothing. and i continued eating what i could for another 6 months. but having the tube let me stop worrying about starving to death... since the start i have made my own foods. i tried the commercial formula for a fw days, but felt very nauseaus and did not want to have so much sugar. it has become part of my daily routine and isquite easy.

 

[Paula]

Hi
My father was diagnosed in February 2006 with ALS and is not able to work, he tires very easily and has trouble with his breathing. It appears that some people are still working 40 hour weeks where do you get the energy to do this?

Paula

 

[John1]

Hi Paula,

ALS does sap one's energy. I used to sleep 5-6 hours a night and now need 7-8 hours. As well your dad was just diagnosed and the emotional shock is still likely taking a toll. I found that the first year in many ways was the worst. There was the diagnosis itself and the drain of so many decisions to make and the almost overwhelming fear that the uncertainty of it all brings. At least for me, and I believe for many, even though with time the symptoms worsen, the mental anguish is definitely reduced. I am fortunate that my job allows me to keep working. It is mostly computer work and the field work required I can delegate to others. My progression is also fairly slow. I was diagnosed in 2000 and although I can't walk much (poorly with a walker) and my breathing is suffering, my speech is still generally understandable, scooters are proving to be a good substitute for legs and I can still drive ok with hand controls.

If I can pass on a word of advice from one who has been there, let your dad do as much for himself as he can to let him retain as much independence as possible. Encourage him to do his own research and planning for this disease and not to rely on the decisons of others. I live alone most of the time and have been forced to do for myself but when someone is here for a while, I find myself giving over to them and slacking off. People think it is remarkable that I do so much for myself, but by so doing, I am much more content. Obviously there are things he has to let go and give over to others but don't be in a hurry to do for him if he can still do it himself. As well, I don't mean to suggest that he not employ all kinds of devices that make life easier (and less tiring). Some things that have helped me immensely include: scooters, wheelchair/ramp van, raised toilet, bidet, roll-in shower, shower chair, widened doorways, completely ramped home eliminating all steps, easy access to home (ideally no ramp or steps), raised beds for gardening, easy kitchen layout (especially fridge, freezer, sink and cupboards), raised outlets and easy light switches, large rooms with ample space to manoeuvre scooters, easy access to outdoors, cell phone in car and while scootering and accessible work area and office space with internet. I have given over house cleaning and laundry and most outdoor chores such as snow shoveling and lawn mowing (although I can still shovel my deck by sitting on my walker or scooter).

Best wishes from one islander to another.

John