Feeding tube discomfort

Hi Katgi,

I remember how painful mine was and I also got a slight infection but didn’t need to be hospitalised just an antibiotic cream. It eased once the clips were taken out relieving the tightness. I presume your clips must have been removed by now.

It did bleed and I kept it clean and turned the tube gently to prevent it from sticking to the congealed blood. I also put gauze in between the plastic stopper and my tummy as this really irritated my skin. 

It should start getting easier for you now I hope. 

All the best, 

little-fi

Hi Katgi

My hubby finished his treatment for tonsil cancer in Jan 2020.

He had a PEG tube fitted in Nov 2019.

Initially he had lots of issues with it and it was very painful. He got an infection, got antibiotics, it actually fell out one night.........

He had excruciating pain at times with it.

However, it was the best thing he had. He ended up using for everything 100% of the time, all medication, fluids and food.

It helped him recover well as he kept his calorie intake up.

Let me know if we can help in any way.

Hi Katgi

I read in your profile that you were having trouble with trismus and could only open your mouth about 1c.m. so I  am guessing that is related to the need for the feeding tube.

 I also suffer from trismus since my maxillectomy followed by radiotherapy earlier this year. My mouth opening is very limited and as I have to put an obturator in and out daily (it is like a dental plate that covers the hole in my sinus) I was most concerned that if my ability to open my mouth decreased even more I might no longer be able to get it in and out as it was a bit of a struggle. Also the issue with getting a spoon in my mouth and was using a teaspoon initially. I guess I was lucky as I had all my teeth on my right lower jaw and part of my jaw removed in a previous operation in 2013 so that gave me a bit of extra space  to get a spoon in.

I have been doing exercises trying to stretch my jaw a bit more using pop sticks and am now able to open my mouth about 1.5c.m. but I think that might be it now.

I have managed to upgrade to a dessert spoon and can get my obturator in more easily. Never thought I would be pleased about the operation in 2013 giving me more space in my mouth but I still make quite a mess when I am eating and have to constantly wipe my mouth.

Hope that the feeding tube works really well for you and it helps to overcome the trismus issue.

Wishing you all the best

Lyn

It’s finally getting better

Thank you, it’s somehow comforting to know that I’m not the only one who has things go wrong. It is finally getting better thank goodness. 

Hi Katgi, Spotted your post.  My hubby had a PEG feeding tube fitted last July and has six weeks of problems difficulties etc.  He too had an infection, blocked tube but, bleeding, back flow.  Nurses sorted all those out and got him prescriptions for a honey based barrier cream which seemed to help things heal better.  Hope you are now settling with it and that it does the job it is meant to do.

My Motto is :-

One step at a time, One day at a time.  Deal with whatever that day brings and then move on.