• Any advice on dealing with a feeding tube?

    Asked by karenglowacki on Monday, August 15, 2011

    Any advice on dealing with a feeding tube?

    My FIL is getting a feeding tube inserted tomorrow. The radiation has burned his throat so much that swallowing anything is painful, and as a result, he's been losing weight. Another 4 weeks of radiation to go. Any advice from someone who has experience that, or has been a caregiver who may have some tips for mu FIL or my MIL, who is his caregiver? Thank you!

    8 Answers from the Community

    8 answers
    • Candy's Avatar

      I'm Karen's MIL and the feeding tube for my husband has been a blessing for him to be able to get some nutrition and meds daily, since his throat is so raw. He's not speaking now due to the pain and is only swallowing sips of water.
      He mostly maintains his own feedings of nutrients, water and meds via the tube, but I help him place split gauze pads between his skin and the tube connector. I also learned how to use the the tube in the event that I'd need to do it for him. Even after his radiation treatments are soon finished, it will take a while before his throat heals enough to swallow food again, so that the tube can be removed.
      Any other advice from anyone would be appreciated.

      about 5 years ago
    • mac101467's Avatar

      Hi, hopefully things are improving well. I too have a feeding tube. I have had it for 2 months and finally am able to drink water, milk, and yes, even iced coffee for the first time in a long spell. Soft foods are finally happening and I am scheduled to have the tube removed next week.
      The best things you can do if you have not been told ( I wasn't ) is to use the formula slowly so you do not vomit. Any sugar free candy that can be sucked on may also coat the throat so it isn't so sore and gives that swallowing muscle to work a bit. But do not rush anything at all. You may be more prone to mouth infections because of the radiation and this may help to keep them down a bit. It worked to a small degree for me, but everyone is different. If you need anyone to talk to on this, email me. I will be more than happy to talk about it.

      about 5 years ago
    • krbrowndog's Avatar

      I has a nasal feeding tube for about 1 1/2 months. I had difficulty with the formula that the hospital prescribed, it was very thick and made me nauseous, I complained but for the most part this fell on deaf ears (this was while hospitalized only) the only time they would listen is when I told them I was going to vomit, that got their attention and they stopped the feeding and/or slowed it down, which leads me to my next point, the time element. I found (when I got home ) that using "Boost high protein drink" or "Ensure" high protein was much thinner (less calories though) so therefore the feeding time was cut in half and I also experienced no nausea with either of those choices. As for the nurses and etc not listening, it seems to me that when you can't speak, they think you become stupid as well. Maybe this isn't the case everywhere and only at Univ of Michigan, but sometimes I wonder where they get these folks that don't seem to give much of a XXX about their patients

      almost 5 years ago
    • Barbara's Avatar

      I have been on a belly feeding tube now for 7 months due to the
      inability of my swallowing mechanism to work following two cancer surgeries and radiation. I am still working with my oncologist/surgeon and two speech therapists to try to resolve the problem but in the meantime, ENSURE and othe protein drinks weren't enough to supply the calories or nutition I needed, so I have been on a formula called TwoCal, four cans a day, and i have been able to gain back about 15 lbs.which I had lost. Believe me, your experience with nurses is not unique to the U. of Michigan. In the hospital, my feeding tube was constantly 'disconnecting itself' and I would lie in a sticky puddle or slip on the floor when I had to make a bathroom call. Frankly, I was glad to get home and make things work correctly. Someday our combined efforts may find the solution to restoring my swallowing but in the meantime at least I feel good!

      almost 5 years ago
    • darthpaul's Avatar

      for me i lost 50lbs in a month from not eating nothing tasted or smelled or sounded good execpt fluids like teas and gatorades and my onc. wasent worried that much be he did say if i did not start eat soild meals and or lost even more wieght that a feeding tube was in my future ...........that is all it took ! you can say it scared me striaght , i start to think what sounded good and what would put wieght back on ( i dont recomend this to anyone but it worked for me ) i stopped at jack in the box and sat there and stared at the menu until i tried somthing and it was there 1/4 cheese burger , it tasted good to me ! i told my onc. and he told me if its going to make me gain wieght then so be it , so i ate 2 of those aday lol for awhile my wieght increased and i knew i had to start weening my self off of the food , so to this day i have not needed a feeding tube . for me that was a line drawn in the dirt and i was not going to cross . i know others who had to get the tube no matter what because the circumstances of meds or treatments , i know this went of the question but anyone out there who doesent want a tube and if they can prevent it i hope this helped .

      over 4 years ago
    • rob58's Avatar

      i had tube put instomach was a little pain full at first but i got used to it i was scared because they didnot tell me about the pain when i left hospital,however it really wasnt to bad after about a week i forgot it was there. had it for 10 months got it taken out 2 days ago. hope this helps anyone going through this.if you have questions please write me back robg

      over 4 years ago
    • Charlie54's Avatar

      Experience about 11 hours ago
      Charlie54 shared an experience
      Oh No (Cancer is back/Recurred ): I had a lump appear on my neck in 2005...I never smoked but I did drink for many years....after surgery to remove it, I was told it was cancer squamous cell carsonoma, I was given options to have chemo/radiation, or just watch it ..So I decided to watch it...Well 5 years later another lump appeared and this time it went from one cyst that was removed to 6 lymphnodes and the primary was located at the base of my tongue...So now I had to get chemo and radiation along with surgery to remove the 6 bad (tumor filled) lymphnodes...Treatment began 3 days after surgery, I was given Eurbotux for chemo, which did not make you sick or lose any hair, however you will break out in a terrible acne rash...I had 35 radiation treatments, the first 4 weeks were painfree, but week 5 began the daily pain in my throat/mouth area...I weighed 220lbs for many years now I went down to 168lbs...so I had to have a feeding tube put in my stomach to eat and stop the weight lost, the tube is put in during another surgery. The medicine that help my mouth pain was called by the pharmacy..MiracleMouthWash, I got it by the quart size and you will use it ..all of it...You will get fatigue during treatment and may need help getting to treatments...Now it,s been one year out and I have drymouth and must drink all day long and when eating...my taste has come back but it not the same as prior...spicey is real spicey and because your throat is now damage, you cannot eat alot or large mouth fulls...heartburn is a daily occurrance, I also have lympodema or turkey neck, but I,m 54 so I would have that anyway, it's just a little sooner...Now my summary...Although it's horrible news to get, it's no longer a Death sentence, and you will adjust to the different changes to you throat, mouth, neck, eating is different, taste is different...But through it all...I,m Alive, I feel great...You will get closer to family and friends and co-workers, almost all my caregivers were awesome, family, nurses and doctors, and friends...In my personal experience, Prayer, prayers, and talking to and trusting in God's Son...Jesu.s pull me through ...Your faith is a true healer when you trust in the Lord...I give Thanks to all who went thru the journey with me, my wife, my children, my family, my friends, and the many doctors and nurses all who did there best to help me get thru, and to help me forget the cancer journey...There will be setbacks on your journey, pain<---although tolerable---...and changes to your body that you will have no control over, but the second you finish your last treatment...each day will be better than yesterday, and although your daily thought is Cancer now, when you finish...you will not think about it again, oh sure you may have a memory from something you heard or see on tv, or online, but that's it....One more note: Stay away from the internet for information, as you will read the wrong info and make yourself crazy, thinking of death and dying...an Thank all those who will help you...I hope my story may help and comfort you on this journey, and remember it will all be over soon...Goodluck and God Bless you.....Charlie Fowee...Ohio

      about 4 years ago
    • SteveG's Avatar

      I had cancer of the base of the tongue and got all my nutrution from a tube for five and a half months. The tube is the patient's best friend and will save his life. He should become comfortable using it as soon as possible. Here is the drill: Have lukewarm water and lukewarm nutrition open in small mouth containers or containers with spouts. It it too hard to pour from a wide mouth container into the narrow syringe. Put the syringe in the tube and hold both the tube and syringe with your non dominant hand. The syringe I had would not stay in by itself. Pour in the nutrition with your dominant hand. The same person should hold the tube /syringe and pour or else the holder and the pourer will be going in different directions. I did eight ounces every three hours. Flush the tube with a syringe full of water. Remove syringe and cap tube. I never found a satisfactory tape to hold the tube in place when I was not using it. The paper tape was non irritating but would not hold. The stronger tape left red marks. I would put a piece of tape on my stomach and then tape the tube to the tape so that I when I needed to use the tube I would be pulling tape off tape instead of tape off hairy skin. I ended up tucking my shirt into my pants and using that to keep my tube from dangling below the belt. My therapist said I might have regained my swallowing sooner if I had started therapy before I lost my swallowing but that insurance would not pay for this. I recommend doing it anyway. Follow the exercises you are given. Do not swallow things the therapist says you are not ready for. You could get pneumonia. Get up and walk around several times a day. I did not do this and got a pulmonary embolism, which could have killed me. It has now been a year since my tube was removed. I eat everything even if I am slower than everybody else. Even though I am 60 and have had cancer, etc., etc. I am back to running. You can get to the point where you are almost as healthy as anybody.

      about 4 years ago

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