People who have had ileostomies for 40 years don't seem to feel a need to post online about
it. They pretty much have it down pat. We do sometimes have people post who have had ostomies for a long time, but it seems like they usually pop online with a specific question (like "I've used Coloplast for 30 years and now it isn't working anymore") or, being older, tend to have some trouble understanding how to use the board. UOAA's boards tend to have more permanent ileostomates. Shaz is one of the few longterm ostomates I see posting here or anywhere.
Have you been to an in person ostomy support group? Again, I think it will be mostly new ostomates, but most likely a different slice of population than the kind of people who post online.
dx'ed UC pancolitis 5/12
past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema
current meds: none!
step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13