Continued from my post on GJ Tube Tips and Tricks…
After my first tube change, four months after I got my low profile tube, I started to develop granulation tissue, which is basically new connective tissue that grows outside the body, around a wound. Puffy flesh grew around the tube and the stoma site grew became really red and painful, bleeding at the slightest provocation, like removing the dressing. The pain started to radiate from my stoma through my abdomen; it was driving me crazy. I went to see my surgeon and was told they could use silver nitrate to “remove the proud flesh” – doctors like to make things sound simple and painful, I suppose otherwise people would never agree to it. It’s literally a chemical burn – a small amount of silver nitrate is applied to the tissue and burns off the flesh. They told me I might “feel some discomfort” – (translation – this will hurt like hell). It was excruciating, all day and into the next, I was totally unprepared. The skin around the tube turned black and sloughed off. It did help, though, after a few days the pain was much less and no more bleeding. It came back, however, and I had to go back again for the same procedure. This time I talked the stoma nurse into giving me some silver nitrate sticks to take home so I could use them myself, which I have to do every now and then – usually two months after my tube is changed.
The next time I got my tube change I asked them to use silver nitrate to burn off the granulation tissue during the change, and since then that’s what I do, I’ve had far fewer problems as long as I have it done during the change. The one time I didn’t I had the same pain and bleeding as before.
I also came up with a new dressing procedure. I use tea tree oil diluted in water, about 10 drops/4 oz water or saline. Then I apply Diaper Rash Cream, Stomahesive Barrier Powder and a 2×2 drainage sponge. Every time I change the dressing I put the sponge on facing a different direction, by which I mean the if opening of the sponge faces left on Monday I change it to facing right when I change it on Tuesday. I don’t know why that helps, but it does.
I get my supplies from Byram Healthcare. You have to get a nurse or doctor to call them and set up the initial account but they can turn it over to you so you can order supplies online or by phone.
Although these steps do help a little, nothing I do seems to keep it from coming back. It often bleeds and oozes a little. Right after I get my tube changed (which I do every 3-4 months unless there’s a problem) I usually have a month or two when my tube doesn’t bother me too much. But then the pain sets in. I ask every doctor I see for help with it, but haven’t gotten anywhere.