Hi James. Sorry you feel as though you have been hit in the gut by test results (pun intended). So much of this darn disease deals with unknown. Will I get out of this flare into remission? When? What meds work? Why didn't they work? When will the next flare come? Is this the best I can feel? Should I try something different? Etc.
My daughter, bratcat, has UC. My older son seems to have Crohns. Can you tell I am still in denial? He had/has an abcess down below (I guess it is called perianal--can men get that too?). That's what sent him to the GI but he has had issues off and on for years. He had a colonoscopy. Some inflammation in the colon. Had a capsule endoscopy. A little inflammation in the small intestine. His "symptoms" are very different than his sister's.
It is scary thinking you have one disease and finding out it is another (especially when UC can be "cured" with surgery). But if you check out the Crohns or Ostomies forums here, there are many Crohnies who are doing great. When my daughter was first diagnosed with UC, she found out an old teacher of hers has Crohns (since he was 12). He has been a great role model in that he is a middle school teacher with a wife and baby and living a healthy life. While bratcat was in her flares, knowing that he had been there (and worse in his case) and made it through made it bearable.
Rant and rave away for awhile. I love this forum!! Then calm down, gather information, look into more tests if necessary, and find what will work best for you. If you don't like what the doctor says, get another opinion. Feel better soon.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!