Hi everyone, This is my first time here. Hope someone can help. Does anyone have any personal experiences with eating problems after surgery and rad. My husband is having an awful time eating. He has a peg tube. He was finished with rad. about 6 weeks ago. He had a neck dissection and had his epiglottis removed along with some lymphnodes. He goes to a therapist for training but he still cannot eat or drink for that matter orally. Does anyone have similar problems? Any help would be appreciated.

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Rosie-
We have all had that problem! It is tough to get started again in the eating department when the inside of your mouth is cover with radiation sores and your throat is raw. Take it slow and don't give up!! Try cream soups as the coat the mouth and have an easier consistency to swollow. Have him work on stretching his mouth open. You can imagine how frustrating it is to finally have your mouth healed and not be able to open it! And it will stay shut if you don't work those muscles. Keep encouraging him to work with PT because it does get better!! Just takes work. - Kris

Hi Rosie! All those muscles used for swallowing are just like any other muscles and get real weak if not used. From my personal experience, I just never gave up. I hated the peg tube & was real motivated to get that thing out of my body! I tried & tried, & tried some more. I coughed, choked, hacked, but just never gave up. Tell your husband to just keep trying & don't give up. I found that milk washes food down real well, it seems to lube the throat & not make me cough as much as water. I remember my swallow therapist saying to practice swallowing as hard as I could with nothing to eat to strengthen those muscles. It does get better. You have to figure out what you can & can't eat. Some things definately are easier than others & some things just won't go down. It's all part of our new normal. You adapt & life goes on. Key word here is life! Happy Holidays & I hope he sees some improvement soon. Erik

Rosie,

How close together was the surgery and radiation? I had IMRT radiation ending Sep 1 where I did not use a peg. I had follow-on surgery on Nov 5 due to a recurrance. The tumor was removed from the throat which required a trach during surgery and a feeding tube. I had the feeding tube in for over three weeks, because it took that long to be able to swallow. I am still on a liquid diet. All of the adverse effects of radiation had healed, yet, due to the radiation my healing is compromised and continues at a very slow rate.

Be patient. Use the peg as long as you need to use it. Exercise the mouth and throat as the therapist dictates. Be patient. It has been the hardest thing for me. I bounced back from my first two surgeries very quickly, and I know the frustration.

Merry Christmas!!

David

Hi Rosie,

I sure know the feeling. I did not have any type of feeding tube (none was offered or maybe not available). It took me WAY too long to be able to swallow enough at one sitting to even feel like anything had reached my stomach. I lost over 60 lbs and it wasn't until I REALLY looked at my whole bod in the mirror (I looked like I had just come out of a WWII concentration camp) that I became determined enough to work hard at it. You don't have to make the same mistake that I did. Sure wish I had had Erik's attitude at that time. The whole healing process is so determinant on the amount of nutrition that you can get into your body, and I don't just mean near term healing but LONG term healing, also.

Think positive and positive will happen.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Hi Jack,
I lost over 60 lbs as well! Who is that staring back at me in the mirror ;-) ? I didn't have a feeding tube either. Some here have lost a lot of weight with the feeding tube. Others have been able to maintain the present weight because of it.

PS this thread actually belongs in "Currently in Treatment" topic rather than "Insurance and Financial Forum". The way to do that is go to the appropriate forum first and press the "new topic" button on the bottom left hand side of the screen. You will then have your own thread started and will get a better response this way.

I lost 48 lbs even with a peg. With hard work & determination I have gained back 10 lbs. Lots of muscle, I'm lean & mean. I am in the best shape in 15-20 years. HaHa! Erik

Rosie, welcome to the site. Sorry you had to find us, but we'll help all we can. I had a peg as well and lost 50 pounds, 25% of my body weight. I had a lot of problems restarting the eating process. Soft foods worked best, soups, macaroni and cheese, and especially poached eggs on hash. Avoid spicy foods, vinegar, citrus. Your husband will have to experiment with what works and what doesn't. My wife got to the point that she was a little frustrated trying to find food I could eat. Tell him to keep at it and be stuborn. Don't let this disease beat him. Will pray for you both.