Feeding Tube advice

cjohnson16

So my father is getting his feeding tube tomorrow , we take him in at 8 and his surgery is at 10am! He will then start radiation and chemo next monday..It is starting to get too real and I just fear he will be in pain. So my question is how did you feel after the feeding tube was put in, any pain or anything that helped make you feel better?

Thanks
EVERYONE!!

hawk711

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

Skiffin16

Welcome....
I didn't have the PEG, so can't offer any information concerning. But from being on here a few years now, I can't remember anyone having any specific problems.

One thing that my chemo MD told me...any problems you have let me know..."I have something for it"...and she always did.

Here is a link the the SuperThread, tons of great info that we have compiled over the past few years, and put to a post maintained by my buddy Dawn (Sweetblood22).

SUPERTHREAD

Best,
John

michdjp

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

jim and i

I second that
I second what Steve said. Only thing to add is be real careful not to let the ballon break and if it does get to emergency room asap because the whole in the stomach closes in a matter of a couple hours and they have to do surgery to reinsert it. The reinserting ws more painful to Jim than the initial. He has had no problems with the PEG other than that.

Debbie

Kent Cass

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

soccerfreaks

jim and i said:

I second that
I second what Steve said. Only thing to add is be real careful not to let the ballon break and if it does get to emergency room asap because the whole in the stomach closes in a matter of a couple hours and they have to do surgery to reinsert it. The reinserting ws more painful to Jim than the initial. He has had no problems with the PEG other than that.

Debbie

tube out
If you are on the type of tube that Debbie is describing, as I was, you can expect that balloon to collapse about once per year for as long as you have it, and you do indeed need to get to the ER pronto so that they can maintain the hole with a temp tube until you can get to the OR for the rather minor project of reinserting a 'permanent' one (if you keep the hole open, the reinsertion is really painless: I was awake for mine all three times, both for the ER and the OR).

Take care,

Joe

George_Baltimore

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.

hawk711

HI Michelle
Getting off the PEG is a time consuming thing. I was on it 13 months and wasn't sure when I took it out 100%....start by drinking thicker drinks, like milk, shakes, power drinks to get some calories. I ate yogurt everyday, it took me 45 minutes to start and now I gulp it down. Make sure he uses the PEG tube everyday, even if he doesn't feel like it. He needs the protein and calories. Just give it time, like months, not weeks. I hate to tell you it takes so long, but this healing process is different for all of us, and his could take a long time. OR he may get better fairly quickly in a few months. It is a crazy process, but it wil get better. just make sure he eats something daily, soft and somewhat easy to swallow. Don't push him to eat more, it will come as his confidence builds. Be positive and have patience,,,all the best Steve

Hal61

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

sweetblood22

Wel, mine hurt like hell the
Wel, mine hurt like hell the first couple days. Getting out of the car when I got home. Holy smoke that freaking hurt. >.< just took pain meds and time.

sweetblood22

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

sweetblood22 said:

Wel, mine hurt like hell the
Wel, mine hurt like hell the first couple days. Getting out of the car when I got home. Holy smoke that freaking hurt. >.< just took pain meds and time.

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

sweetblood22

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.