Feeding Tube Pain

21 Posts | Page(s): 1 2 3  Next 

Feeding Tube Pain

by Dansingrhyme12 on Tue Feb 06, 2018 10:50 PM

Quote | Reply

I've been diagnosed with Stage 4A, cancer of the supraglottis (upper epiglottis.)  I had my feeding tube "installed" four days ago and I've never had so much pain.  

My doctors have checked the site and have told me that it's because I'm thin and layers were cut into.  For some reason, I'm not satisfied with that answer.

Has anyone else had this issue?  If so, I'd like to hear from you and maybe hear what your physician had to say.  Thanks.

RE: Feeding Tube Pain

by akb1972 on Wed Feb 07, 2018 05:12 AM

Quote | Reply

so sorry to hear about your pain.  My husband's feeding tube was terribly painful.  He described it as stabbing pain which lasted for at least 1-2 weeks after the feeding tube was placed.  You could try pain meds or lidocaine patches, depending on whether you feel deep pain or whether the discomfort is closer to the surface of the skin. You can also discuss with the nutritional team the possibility to reduce the rate of infusion ..  and instead spread it out over a longer period of time. Maybe the flow rate is too much for your body to handle now, until it adjusts.   all the best

RE: Feeding Tube Pain

by Dansingrhyme12 on Wed Feb 07, 2018 11:52 PM

Quote | Reply

Thank you for responding.  I can completely relate to the pain your husband was experiencing.  I have been able to get some pain medication.  It wasn't much help becuase I was still having spasms.  Because of the pain, I was also having terrible constipation.  Each day, my body is trying to adjust to this new "invasion of space."
I felt so happy today when a nurse took a look at it today and said that it looked so tight against my skin.  I felt like finally someone understood me.  She did the best she could to free up a little space between the tube and my skin.  It feels a little better, but this will definitely take some time.

RE: Feeding Tube Pain

by Diamond_David on Sun Feb 11, 2018 11:12 PM

Quote | Reply

On Feb 06, 2018 10:50 PM Dansingrhyme12 wrote:

I've been diagnosed with Stage 4A, cancer of the supraglottis (upper epiglottis.)  I had my feeding tube "installed" four days ago and I've never had so much pain.  

My doctors have checked the site and have told me that it's because I'm thin and layers were cut into.  For some reason, I'm not satisfied with that answer.

Has anyone else had this issue?  If so, I'd like to hear from you and maybe hear what your physician had to say.  Thanks.

I will tell you about mine. Do you know how the tube works inside & out?

The tube has a ball at the end, tube goes down teh throat, they poke a hole thru the stomuach and chest wall and there it is!

but they slide over the tube on the OUTSIDE a rubber washer to hold the ball against the wall inside. it was TOO tight, so they pulled the washer back some and it was fine. Also the tube needs to be twisted by your husband in teh show 1/4 turn so it doesn't "grow" on to his skin.

Pulling the washer on the outside back a but helped

RE: Feeding Tube Pain

by Dansingrhyme12 on Mon Feb 12, 2018 12:30 AM

Quote | Reply

You had the same issue, David?  So you know how painful it is.

I did see the nurse trying to adjust the washer when I told her that the tube was too tight.  It moved such a little bit that I hardly even noticed the difference.

I do make sure that I turn it, clean the are and put a fresh bandage on it each day.

Thank you so much for you input, David.

RE: Feeding Tube Pain

by Diamond_David on Mon Feb 12, 2018 12:32 AM

Quote | Reply

My nurse had to turn it a lot, as a matter of fact I had to go to a second doctor who tugged at it

Thats the problem I'm betting. Painful to tug but after that it was fine

RE: Feeding Tube Pain

by Dansingrhyme12 on Mon Feb 12, 2018 12:36 AM

Quote | Reply

David, I had mine tugged at too.  Man, that hurt!

I just feel like it's too tight.  Tomorrow, when I go in for treatment, I'll have them take a look at it and see what they can do.

Thanks again!

RE: Feeding Tube Pain

by Diamond_David on Mon Feb 12, 2018 12:43 AM

Quote | Reply

They also may be afraid to hurt you. Its too tight. Your stomouch is a BAG hanging from the tube, its tugging on the chest wall

Lets talk future. I had a feeding tube for 4 months, no solid food, but you have to drink. When they take the tube out, they lay you on a table, my doctor put his foot on me and yanked like hell. Hurt for 45 seconds.

My ent prescribed after that a milkshake a day-750 calories, I had lost a lot of weight. 

A friend turned me onto this gatorade nutitional  shake, only available onlione. Its delicious (unlike Boast)

see it on Amazon

https://www.amazon.com/Gatorade-Nutrition-Shake-Chocolate/dp/B001CZWMTE/ref=sr_1_8?ie=UTF8&qid=1518396031&sr=8-8&keywords=gatorade+protein+shake

About $3.50 a bottle at Amazon, buy some (not available in stores)

if you like it i can give you a palce to buy for $2.50 bottle (plus shipping)

I had my last treatment May 2008. I drink this for breakfast every day

RE: Feeding Tube Pain

by Dansingrhyme12 on Mon Feb 12, 2018 12:49 AM

Quote | Reply

Yikes!  The thought of anyone tugging on this scares me to death!  The soreness and pain around the site is just too much to bear right now.

Thank you so much for the info on the Gatorade shake.  I'm definirtely going to look into it, David.

RE: Feeding Tube Pain

by Diamond_David on Mon Feb 12, 2018 01:02 AM

Quote | Reply

how far into this are you?

did you have throat cancer?

After you get the washer adjusted it will be a nusance, not painful

Also, here's a tip. go to sports store. Buy two whistles, they come on a chain worn around the neck, toss out whistles. waer the string around neck and attach it to the tube so it doesn't tug as you walk or shower. After taking a shower, swap it for a dry one. 

21 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.