Any one else still have a port in place ? I am a year and a half out from chemo and radiation but still using the feeding tube. I have the port flushed every three months but sure have a lot of trouble with it. I have asked several times to have it removed but they say wait till you have the feeding tube removed. Since both are surgical procedures it would save one surgery. I do not foresee being without the feeding tube anytime soon.

The port REALLY sticks out under my skin, so much so that each one of the three little buttons on the triangle shape of the port itself and the line are very clearly visible. I have had it checked several times but they always say it is ok it is just because I lost so much weight. I have lost over 50 pounds and now weigh 85.

It seems as though i must turn my head just the wrong way and it irrates the muscles around the tube. So, so painful for hours BIG time. I hold ice on it when this happens but have not found anything that really helps. I have taken 3 ml of prednisone a day for inflammation due to lupus for many years. Since this port problem I have had to up the prednisone to 16 ml a day to try to control the inflammation.

Anyone else have "port pain" ?

It seems like more members get feeding tubes than ports. I was one of the lucky ones who get both. The port was left in place for a long time after I asked the doc about having it removed, it was well over a year post rads that he finally agreed. I too found the port to be uncomfortable. I felt like my port stuck way out. I had several days where it would hurt, but mostly it was just uncomfortable.

I hope Im not opening a can of worms here but, Im not sure why your feeding tube needs to be removed by surgery? Do you have a regular PEG tube or another type of feeding tube? As for that type of removal, its usually after a patient can maintain their weight for a couple months eating and drinking everything by mouth without needing the tube. After what you have been thru gaining some weight back could take a while. It also may be another milestone your doctor may want to see before its removed as you lost almost a third of your body weight. I too lost a tremendous amount of weight which made recovery a long road. Even today, being 9 years post rads I have not gained back the weight I lost.

Recovery often is a very long process with many results not exactly what we expect or want. Even after a year post rads most patients are not 100%. You still should experience more improvements in your sense of taste and stamina. Please keep us posted with your port and peg process.

I still have my port for almost 7 years, although the last time I needed it was for chemo two years ago, which now reminds me I need it flushed. I had some doctors after treatments saying the port could be removed, but after a number of recurrences, blood transfusions, I wasn't on board with that, and so was one of my oncologists.

The port doesn't bother me that much, sometimes the skin is more irritable, but that's about it, but you do have to watch it doesn't get infected since the infection can go septic, and that's one reason the doctors say to remove it, and another reason why they don't like to use it for regular blood work either, and persons accessing it should have port training. If there is sepsis, the port and peg are usually removed in case it's the source, and so was my port in 2009 for that reason, although I vaguely remember, but another was later put in, so it was my 2nd port.

Maybe their keeping the port due to your weight loss? They can do TPN, Total Parenteral Nutrition, through there if needed. That's what I needed in 2009/2010 when I lost over 110lbs, and was NPO, even after a peg tube was put in the port was still used to get nutrients in I guess due to the stomach not being a viable.

As far as the peg tube removal, it may depend on the type you have. My first may have been the balloon type, and that was deflated, and yanked out by the gastroenterologist in the office. My 2nd peg, may have been the button type, and that was taken out under sedation during an endoscopy through my mouth in the OR type room where they do these procedures.

You can ask your doctor why it's not being removed. Good luck