Feeding Tube advice

Hi there CJ
I had a PEG tube for 13 months during and after treatment. The surgery is minor, in/out same day. They poke a hole in your chest/stomach and put in a tube. It was not at all painful, until a few hours later, then it was quite sore for 24-48 hours, but reasonable soreness.
The tube was my lifeline to healing and maintaining my weight and energy. I think it is a blessing for your dad. He won't think so, but trust me it is. Make sure he uses it when he begins having trouble eating and swallowing. Get a gravity pole and the hospital should have a nutritionist meet with you advising on the type of liquid nourishment to feed your dad through the tube. I had 7 cans a day and only lost 15-19 lbs in total.
I wish you all the best as you start this treatment. It is tough, but it works. Thats what you have to keep telling your dad, it works. We here, are all proof of that...
Good Luck
Steve

hawk711 said:

Hi there CJ
I had a PEG tube for 13 months during and after treatment. The surgery is minor, in/out same day. They poke a hole in your chest/stomach and put in a tube. It was not at all painful, until a few hours later, then it was quite sore for 24-48 hours, but reasonable soreness.
The tube was my lifeline to healing and maintaining my weight and energy. I think it is a blessing for your dad. He won't think so, but trust me it is. Make sure he uses it when he begins having trouble eating and swallowing. Get a gravity pole and the hospital should have a nutritionist meet with you advising on the type of liquid nourishment to feed your dad through the tube. I had 7 cans a day and only lost 15-19 lbs in total.
I wish you all the best as you start this treatment. It is tough, but it works. Thats what you have to keep telling your dad, it works. We here, are all proof of that...
Good Luck
Steve

Hi Steve
Do you have any
Hi Steve
Do you have any advice how to come off the peg tube? My dad is 16 weeks since treatment. We did 7 weeks of speech therapy to try to swallow again with little success. Swollen epiglottis seems to be the trouble. Dr. After dr. Tells us time give it time, watching him choke down anything he tries is very difficult. I wish I knew of a quick fix for him (although this is a wish I realize) but would appreciate any advice going forward.
Thanks
Michelle

hawk711 said:

Hi there CJ
I had a PEG tube for 13 months during and after treatment. The surgery is minor, in/out same day. They poke a hole in your chest/stomach and put in a tube. It was not at all painful, until a few hours later, then it was quite sore for 24-48 hours, but reasonable soreness.
The tube was my lifeline to healing and maintaining my weight and energy. I think it is a blessing for your dad. He won't think so, but trust me it is. Make sure he uses it when he begins having trouble eating and swallowing. Get a gravity pole and the hospital should have a nutritionist meet with you advising on the type of liquid nourishment to feed your dad through the tube. I had 7 cans a day and only lost 15-19 lbs in total.
I wish you all the best as you start this treatment. It is tough, but it works. Thats what you have to keep telling your dad, it works. We here, are all proof of that...
Good Luck
Steve

CJ
I agree with everything Steve said.

Got mine before treatment, and it was a Godsend. Due to my regiment, I started using it exclusive at the end of the first week. Had mine for a little over 15-months, but only used it for a little over 2-months. Takes a little getting used-to, and there are several types of PEGs. I had the old-fashioned gravity, but there are the balloons, and the pump ones that slowly feed one. Let us know which type he gets.

Will need an ample supply of 3x3 gauze. I used paper tape, but Dawn used a netting-type wrap to hold the tube in place when not in use. Dressings have to be changed daily, along with cleaning the area with the changes. I used peroxide, and had no problems, but now it seems peroxide is not advised. Dawn's Superthread might be of help.

Like Steve said, we are all proof that the treatment works. My last rad was in early-April of 09, I returned to work a month later, and could eat most anything some 4-months later. There is no denying that H&N treatment is not an easy road, and there likely will be difficult times, but let the Drs know and they will help. And he will survive.

believe

kcass

michdjp said:

Hi Steve
Do you have any
Hi Steve
Do you have any advice how to come off the peg tube? My dad is 16 weeks since treatment. We did 7 weeks of speech therapy to try to swallow again with little success. Swollen epiglottis seems to be the trouble. Dr. After dr. Tells us time give it time, watching him choke down anything he tries is very difficult. I wish I knew of a quick fix for him (although this is a wish I realize) but would appreciate any advice going forward.
Thanks
Michelle

To michdjp
Please don't be hasty to have the tube taken out. I tend to agree somewhat with his doctors. My chemo and Rad started in Jan. 2004. In Dec. Of 2004, I had the tube taken out. My cancer was in the base of the tongue. As it turned out, my epiglottis is curled and basically non-functional. Even with that, I didn't start having swallowing problems until June of 2007. Since that time, I've had esophogeal dilations to open up the stricture every 4 to 6 weeks. In August 2010, I voluntarily asked that the g-peg be put back in because I wasn't getting enough hydration. Thankfully, I had it done. Right now, as I type, I am hooked up doing a feed because I had another surgery that has left me unable to eat anything. I can't swallow liquids either because the stricture won't stay open. After my surgery in June, I wasn't dilated for months so now it's just not staying open. I just spoke to my gastroenterologist yesterday about scheduling them more frequently to see if we can get it back the way it was before the surgery. We're going to do the dilations every two weeks for the next three times. Hopefully that will work.

Sorry, I just realized I have REALLY strayed off my original point. Don't rush the doctors to have it taken out or he probably will end up having to have it put right back in again. When i was in his position, I found that I could swallow if I took a swig of milk following the food to wash it down. A little cough after each attempt kept the food from going down the trachea. Has he ever tried that. Good luck to him and may God bless.

No Pain, No Pain
Hello CJ, I had and outpatient procedure. They did put me under of course. I never had any sorness to speak of, not right after, or ever really, and had mine in well over a year.

Hope your dad has the same luck,

best, Hal

michdjp said:

Hi Steve
Do you have any
Hi Steve
Do you have any advice how to come off the peg tube? My dad is 16 weeks since treatment. We did 7 weeks of speech therapy to try to swallow again with little success. Swollen epiglottis seems to be the trouble. Dr. After dr. Tells us time give it time, watching him choke down anything he tries is very difficult. I wish I knew of a quick fix for him (although this is a wish I realize) but would appreciate any advice going forward.
Thanks
Michelle

To michdjp
Michelle, it can be slow going. I had my tube for 18 months. Biggest thing is to keep trying, and not try to tackle foods that you just aren't ready for. Start with smoothies, and puréed foods, then move to things that were prepared with a mini chopper. Etc. There is copious amounts of info on how to start eating again and recipes and stuff like that on the Superthread. There is no quick fix. You just have to prepare foods that will work for him. Can he do soups and thick liquids?

michdjp said:

Thanks for the advice
My dads diagnosis came as such a surprise he is still not used to the fact that he cannot eat. When we offer milk shakes
(which he never liked or yogurt ) it does not appeal to him. He tries soup everyday but even that he is getting tired of.
Or it takes too much effort to eat he just stopsmoutmof disgust. On Monday I will call the gi dr. To ask for a throat dilitation
As it does seem things are not getting better in fact they seem worse. I know his gi dr. And he is very cautious and all about the "time" factor.
It is just very hard to keep his spirits up about eatinfpg as none of the foods he can trynappealmto him or they are so hard to try to eat its discouraging.
Last night we tried an annisette cookie dunked in coffee it was like mush.. He choked on it.
To hear after getting thru your treatments NED is overwhelming, however, picking up the pieces is as brutal as the treatment. (and I am just a bystander) really can't imagine how difficult it is. But I will never give up trying!!!
Thanks to all sorry it's late all the kids had the stomach virus.
Michelle

I had to wait a few months
I had to wait a few months after radiation before I could get the dilation. Then they had to do it twice. I understand about getting sick of soup and that too. I eat a lot of the same things all the time. When I get frustrated about that, I just remember when I had the tube and didn't eat at all for nine months and that usually snaps me out of it.


How about things like oatmeal? In the beginning I gave the raw oats a bit of a pulse in the chopper to make smaller pieces, added more water and cooked it longer. Maybe baby oatmeal is smaller pieces, too? Idk I never had kids.

A wet cookie, is not easy to eat. Combining textures like that, makes it hard to swallow. Also any bread or cookie or cake textures can be difficult. You can look at the Superthread for ideas and take a look at the diets recommended for dysphagia. And start with things at the most basic level first.
Lots of info and links on the Superthread regarding this. I know it gets frustrating, but if you start slow, and can master the basics, sometimes you can work up to more challenging eating. That is what I've done over the last two years. I still have my stricture and scar tissue, I've not had anymore dilations. My eating is better, but I still struggle.