|
|
 Texas Taco
Posts: 7499
   
Location: Bandera, TX | May be a family member or friend?
Looking for some experiences on how they adjusted to it, and if they were happy with this decision. How did it impact their lives?
Thank you! |
|
| |
|
Location: Not Where I Want to Be | 3canstorun - 2016-09-09 10:27 AM GoMistyGo - 2016-09-09 9:30 AM May be a family member or friend? Looking for some experiences on how they adjusted to it, and if they were happy with this decision. How did it impact their lives? Thank you! Yes, a very good friend has a daughter who recently had it. She is down 60 lbs. She has had not complications. However, she is 29 and is starting to scare me. She can only eat 3-4 bites of something, but when she does, a lot of times it is not food that is good for you.
She has had a weight problem all her life, and her food choices and those of her parents are what made her large.
What I don't like, is that our tax dollars paid for this. :(
I think you guys are talking about two different things.
|
|
| |
|
 Elite Veteran
Posts: 933
Location: north dakota | My only experience is with patients in the hospital who have one because they have problems swallowing food.
|
|
| |
|
 Hummer's Hero
Posts: 3071
Location: Smack Dab in the Middle | My FIL had one for almost 2 years. He had PTSD and Parkinson's and was over medicated in a hospital psych ward after a bad hallucination episode. He lost his swallow reflex as a result and had to have a PEG tube put in. He did regain his swallow to where he could be on a mechanically soft diet, but we maintained the PEG tube in case he should ever need it again. He went into nursing home care after the 6 week hospital stay and they used the PEG to supplement his diet for a long time (they gave him Ensure through it). He got down with infection a couple of times and they used the PEG to give meds, so it was handy. It always looked irritated to me, but, with his Parkinson's he tended to fidget with it more than he should have. It did eventually try to close up and was removed due to being a possible complication in treating an infection. That was towards the very end though, and he actually ended up passing away shortly after, so I'm not sure what life after the PEG would've been like. |
|
| |
|
 Hugs to You
Posts: 7551
Location: In The Land of Cotton | 1DSoon - 2016-09-09 10:53 AM 3canstorun - 2016-09-09 10:27 AM GoMistyGo - 2016-09-09 9:30 AM May be a family member or friend? Looking for some experiences on how they adjusted to it, and if they were happy with this decision. How did it impact their lives? Thank you! Yes, a very good friend has a daughter who recently had it. She is down 60 lbs. She has had not complications. However, she is 29 and is starting to scare me. She can only eat 3-4 bites of something, but when she does, a lot of times it is not food that is good for you.
She has had a weight problem all her life, and her food choices and those of her parents are what made her large.
What I don't like, is that our tax dollars paid for this. :(
Yep, we are sorry. I re-read it. I was thinking gastric sleeve. |
|
| |
|
 BHW Resident Surgeon
Posts: 25352
Location: Bastrop, Texas | They are pretty safe in terms of complications, and generally easy to place, with minimal pain, etc... For many patients they are a godsend. Like anything else, they can be mismanaged, abused, and over used. For instance, they really don't prolong life in dementia patients. They've been around for decades. |
|
| |
|
Extreme Veteran
Posts: 399
| I work for a durable home medical supply company in the respiratory therapy department and we are all cross trained to help with feeding tubes because we do many of the home set ups.
First off is a pump feeding or gravity fed?
Many people that I deal with have a limited decision on whether they actually want it but it has become a necessity so they can eat because otherwise they choke or are unable to properly digest the food. The biggest impact that many have found is remembering to order supplies so they get delivered in time and remembering to charge the pump if traveling. The biggest thing that I stress to the family of the of the patient is how much things are going to change their lives. Many times by this point the patient is ready for the change and just wants to start feeling better and not starving all the time. The family needs to remember how things will change for them for example if they go out to dinner are they going to feel comfortable having that family member sitting there without food or not there at all because they have to eat at home. Or are they prepared for people to stare if you administer a feeding out in public believe me after a couple months you wont notice it anymore. It is an adjustment period but from what most patients have done is create a schedule to order and feedings. |
|
| |
|
Texas Taco
Posts: 7499
Location: Bandera, TX | Thank you all.
My dad has a benign tumor in the back of his tongue. Surgery was unsuccessful and swallowing even pureed food is getting more and more difficult. He always used to be a big man and now is very skinny. It is hard to watch. He is contemplating a PEG. I do worry about the psychological implications, as he is already struggling with this disability (obviously speaking is hard at this point too as his tongue is almost completly imobile)
|
|
| |
|
 Expert
Posts: 5293
| Yep my mom had one after double stroke. SHe lost the ability to swallow. With therapy she regained that ability and went to drinking her favorite. PEPSI. lol The fizz and carbonation is NOT good for the tube. SHe passed away as they were trying to adjust it. SHe was extremely tiny her whole life and never ate much so my guess is, it was a different story for her. |
|
| |
|
Expert
Posts: 1343
Location: East Texas | My grandson has Cystic Fibrosis. He is 17 and had a PEG put in 2 years ago. CF affects more than just their lungs. His body doesn't absorb fats, so he has to take enzymes before eating each meal. Has been this way since he was 6 weeks old. Anyhow, after the PEG, he has gained weight, filled out and looks great. When he goes to bed at night, he puts 5-6 cans of an Ensure-like drink in a bag and he is nourished all night. His PEG has been very beneficial. I will say that he had to have it changed out because of an infection and has to be careful when he plays sports, but it has been a God-send for him! |
|
| |
|
Texas Taco
Posts: 7499
Location: Bandera, TX | horsesinharleton - 2016-09-09 2:04 PM My grandson has Cystic Fibrosis. He is 17 and had a PEG put in 2 years ago. CF affects more than just their lungs. His body doesn't absorb fats, so he has to take enzymes before eating each meal. Has been this way since he was 6 weeks old. Anyhow, after the PEG, he has gained weight, filled out and looks great. When he goes to bed at night, he puts 5-6 cans of an Ensure-like drink in a bag and he is nourished all night. His PEG has been very beneficial. I will say that he had to have it changed out because of an infection and has to be careful when he plays sports, but it has been a God-send for him!
Thank you. I am happy to hear that it is working so well for him and he is an active young man. |
|
| |
|
  Warmblood with Wings
Posts: 27846
Location: Florida.. | Me..but mine was a J tube... I had one in my nose for a few months then Placed in my stomach for 2 years... I had to hook up to the feeding machine but only at night . I wasnt allowed to eat anything nor drink but had been in hospital for awhile so was used to not eating. it was a adjustment I wont lie. It can be painful around the outside due to nerves and gastric acids. I recommend getting a numbiin creme for it. i had 2 sons and just divorced but after i adjusted i was able to still compete but it can be painful at times and keeping your nutrition up is difficult . I had to buy a bed that sits up to keep from aspirating when hooked up at night. is it hard? yes but you adjust and continue on with your life. and you feel better...you tape it up during the day and can hide it fairly well.there were times i wanted to cry and have it gone but then i realized how blesssed i was to be able to have a life.. i had a bad trauma to my intestines so that was why. and when you do get it removed if possible it takes a long time to ever get hungry.he will have to remind himself to eat. its alot to do with attitude.. you have your ups and downs but the family members need to not push or make a huge ordeal out of it.. be supportive but dont go out of your way to draw attention. do your dinners , dont feel bad for eating .. etc.. if he feeds at night he will not be hungry.. i had a hard time keeping wieght on but i was also very active once i adjusted.....I got so comfortable with it that at times the bubble would deflate and it would pop out some and Id have to reinflate it after pushing it back in.. like I said you get comfortable with it .. and people around you do to.. its just a thing ..and just thankful to be alive and able to do things... the nothing by mouth you adjust fairly easy , I even traveled to bahamas .. you can take the machine with you.. the biggest thing is the stomach acid pain and nerves but they have stuff to put on and keep it clean and well padded..if you have any questions feel free to pm me.
Edited by Bibliafarm 2016-09-10 8:37 PM
|
|
| |
|
Texas Taco
Posts: 7499
Location: Bandera, TX | Bibliafarm - 2016-09-10 8:10 PM
Me..but mine was a J tube... I had one in my nose for a few months then Placed in my stomach for 2 years... I had to hook up to the feeding machine but only at night . I wasnt allowed to eat anything nor drink but had been in hospital for awhile so was used to not eating. it was a adjustment I wont lie. It can be painful around the outside due to nerves and gastric acids. I recommend getting a numbiin creme for it. i had 2 sons and just divorced but after i adjusted i was able to still compete but it can be painful at times and keeping your nutrition up is difficult . I had to buy a bed that sits up to keep from aspirating when hooked up at night. is it hard? yes but you adjust and continue on with your life. and you feel better...you tape it up during the day and can hide it fairly well.there were times i wanted to cry and have it gone but then i realized how blesssed i was to be able to have a life.. i had a bad trauma to my intestines so that was why. and when you do get it removed if possible it takes a long time to ever get hungry.he will have to remind himself to eat. its alot to do with attitude.. you have your ups and downs but the family members need to not push or make a huge ordeal out of it.. be supportive but dont go out of your way to draw attention. do your dinners , dont feel bad for eating .. etc.. if he feeds at night he will not be hungry.. i had a hard time keeping wieght on but i was also very active once i adjusted.....I got so comfortable with it that at times the bubble would deflate and it would pop out some and Id have to reinflate it after pushing it back in.. like I said you get comfortable with it .. and people around you do to.. its just a thing ..and just thankful to be alive and able to do things... the nothing by mouth you adjust fairly easy , I even traveled to bahamas .. you can take the machine with you.. the biggest thing is the stomach acid pain and nerves but they have stuff to put on and keep it clean and well padded..if you have any questions feel free to pm me.
Wow. Thank you so much for sharing. I may reach out to you again depending on what dad is going to do. I do however think that he will go this route sooner than later. He will have no choice. |
|
| |
|
Warmblood with Wings
Posts: 27846
Location: Florida.. | please do if you need anything.. its not as bad as it sounds.. he will feel alot better knowing his body is getting the nutrients it needs etc ...and get a good medical equipment place .. they can be of great help when purchasing ointments and stuff for his comfort..praying it all goes well for him..you didnt even knew i had it and I wore breeches alot competing... tape it flat..
Edited by Bibliafarm 2016-09-10 9:42 PM
|
|
| |
|
Expert
Posts: 4766
Location: Bandera, TX | I'm taking care of my husbands uncle. He has had a tube for a couple of months now. He had stroke and that set him back. Then his wife broke her arm (two weeks ago) and that further set them back. They're in the nursing home in Bandera. Trying to get them both home in the next couple of weeks. Our uncle is minimal on his feeding therapy advancement. He likely will be on a tube the rest of his life.
Thus, I will be teaching our sweet aunt the ins/outs of tube feeding.
It's amazing how well some patients rewspond to feeding. |
|
| |
Folks on-line