What strength is your steroid ? I think it's fine to use for a few months.

Can you define ''eating normally'', this is one thing I think everyone must do slightly differently. In all of the blogs very little is written on how to eat with this condition. I find that the usual ''try not to let food touch your mouth'' is obviously correct but it's food choices which are not mentioned very often. Any foods that stain I have a problem with, or foods that are difficult to have in smaller portion sizes, like pasta. Sometimes with pastas the lips are stained which is annoying so I have to run water over them to rinse away the sauce. Pizza is a problem as well and burgers, fries with sauce on, sandwiches. These sorts of conveniance foods people like to stuff in their mouths, it's a problem for EC I think.

Have you ever tried eating by placing the food to the back of the mouth and chewing with your mouth open a little ? I've learned to do this to help stop as much saliva and food touching that lip line. I drink from glasses through contact with the tounge first. So the liquid tips into the mouth across the tounge without the lips having to touch the glass. I'll then hold the tip of the tounge to the top of my mouth to hold in the water before swallowing. It sounds more difficult that it is. It's a reflex action for me now. I find this easier than using a straw which are difficult to use when I drink smoothies as there's bits of fruit in there which clog the straw up.

In the shower I might gently let the water run down my face and rinse my mouth with water but not often. I find if I have a shower without letting water touch the mouth there's a good chance I'll get an extra day or two of keeping the outer skin on the lips without it peeling. That line where the skin meets in the mouth must be so badly damaged.

I suppose you could try covering the aquaphor right into the mouth but thinking about it the stuff will come off quickly as there's so much saliva constantly dissolving it away. At least we can function somewhat normally, eh ? I tried letting them crust but I'm to weak a person to manage that socially. It's not an option for me either. Even taking my mum to church is hard so haven't been going. Sad.

To clarify, you say your EC started from leaving a cream on your lips for 6months ? What sort of cream ? Why would you do that ? It probably destroyed the top few layers of epidermis.. I suppose that's not a problem by itself but the biting and nibbling of the peeling skin would make the wound deeper.

I'm positive your on the right track, appreciate all the feedback. I definately think maybe you should make some small changes to your eating and washing habits though because it sounds like you may not be giving the area enough care. You maye not be treating them delicately enough ?