My gastroenterologist. finally sent Mayo Arizona an email today requesting admittance to their clinic. I wait and wait, doctors are so unfamiliar with this disease they waste valuable time going in circles as my life may not survive another necrotic intestinal surgery. I feel since l gathered all the-research and did a presentation, l feel neglected, as many of you have expressed. Now l am afraid l will have to wait in a long line, even though lm in critical stage now. Can not get out of bed or take care of myself at this time. Does any one have advice to some how get Mayos attention ? I may have organ failure , this is next, other than another necrotic intestinal failure. l have already endured this emergency surgery that saved my life. I do not want to die from sepsis either. lm loosing hope, it’s been 22 years now in bed, waiting. Please forgive me for my sour attitude.