Posted 6/20/2011 12:03 PM (GMT -7)
I just got back from an appointment with my stoma nurse and will be the next to try a bit of paste:) My stoma has some lobes on the bottom from where it healed around the stitches and some of these sort of lift up. They are perfectly attached underneath, the lobes just kind of overhang my peristomal skin ever so slightly in some spots. The nurse said it is just the way some stomas heal and it is not a big deal. Anyway, I was having a painful spot under one of these lobes. She put some silver nitrate on it in case there was some granulated growth happening, but she more thought it was just stool getting under the lobe and causing irritation. I also have another slightly irritated spot that has plagued me since surgery. My stoma is a little long at 1.25 inches tall (which is also a huge blessing since I never have leaks because it never pumps stool under my wafer), but there is one little spot that gets irritated under wear my stoma flops downward toward the bottom of my pouch. I had her check that out too. Both of these issues are so minor... about 1/16" or less of skin involved in two spots and something I could easily live with. Still, might as well get my skin looking as good as possible since I am going to live with my stoma buddy for the rest of my life:)
First, she recommended putting skin prep on the skin just surrounding my stoma. I had been doing this sometimes, but she recommended the Cavillon brand, as she felt it was the most waterproof and stool resistant. Then, she recommended that I get my Eakin seal on even tighter so it really snugs up under these lobes. Up to this point, I was just putting the Eaking up to the lobes. She confirmed that the "hook"method I mentioned in another post was good. (Tear the Eakin ring/doughnut shape in one spot, hook it snuggly around the stoma pressing it on to the skin and then fuse the broken spot back together instead of stretching the Eakin hole over your stoma. It is easier to get it very snug this way as you don't have to worry about stretching it too much and getting center hole in the Eakin too big for your stoma, or getting it wet as it rubs over your stoma). Then, she said to put squeeze a tiny bit of paste between the Eakin and my stoma to further "caulk" any spots that might be exposed. Finally, put the wafer on. This seems to make a lot of sense, so I hope it works. Maybe a combo of Eakin and paste would work for you? I know everyone says less is more, but if you have tried less (as I have) and it isn't working, perhaps this combination will be the key. I will keep you posted.
As far how much space to leave when cutting the wafer... she said to just experiment with closeness to the stoma and find out which gives me the least irritation without constricting the stoma, but she did say it is okay make it a little bigger (1/8" or less), as the Eakin and paste will protect the skin as long as these things are up against the stoma and no skin is showing. I know from personal experience that if I make my wafer too snug to my stoma, my stoma turns a dark color and is not happy. I have a real squirmer that expands and constricts quite a bit, so I have to leave room for that movement. Some people's stomas may not be so wiggly:)
Remember too to be patient with yourself. I was so obsessed with my stoma and skin at first. I would put my clear pouch on and see this tiny bit of skin showing that I missed, and would live in fear for the next four days thinking I was just going to destroy my skin. I worried about getting things absolutely perfect. I have learned that if you do get an irritated spot from doing something wrong, it is usually quick to heal when you fix it at the next change. As long as you are not ignoring any major problems, you should be fine.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010