Pyroderma gangrenosum 4 over 2 years from crohns anyone else out there

Been trying to find support groups..this is the closest ive found to finding one. I see no one is really active on this topic.. I know how rare PG is but am hoping I get someone on here to talk too.. I've tried 4 medications and have been to at least 5 diff specialist for dermatology. Traveling to diff states and there seems to be no light in sight. I am a 35 year old female and my body is literally covered in scars and still active wounds.. I thought crohns was bad enough but the pyroderma is the worst thing that has happened to me health wise.. I see ppm have tried the oxygen therapy, I've done a little research on it but figured insurance wouldn't cover it so didn't really get extensive w my research.. any advice, or juat hearing another story ...ANYTHING would be greatly appreciated!! Crossing my fingers i hear back from someone!!