I won't go on about how many surgeries, complications and re-do's I've had over the past 50+yrs of this disease ( I'm 54 and had my 1st srugery at 2) but I will say that this is not a disease for wimps. You need to be a bloody champion boxer to win this fight on all fronts. We battle hundereds of physical issues from the original disease that brought us here and the poor physical condition that it put us into (malnutrition, underwight, anemia...) to the emotional trauma of having huge chunks of organs yanked out and our plumbing rerouted to "homecoming depression" that hits when we leave the saftey and understanding environment of the hospital for a sometimes very unhospitable home and family...
Do not expect people to understand you, they won't...they cannot...and never will until they get their colons yanked out too (hope not). Expect to fight the good fight and win.
You will...we all do in our own way...it is called surviving and living to tell the tale and then going on to help others who then need us.
My heart goes out to you.