I know it's easy for me to say since it hasn't happened to me, but try to look at the positive side of having your colon out. It is one less place you have to develop fistulas and ulcers. You won't ever get colon cancer. A lot of people who have had surgery end up on Remicade afterwards. I met several. I have been so confused about whether or not I have UC or Crohn's. My GI claims it's always been UC, but I asked him how he knew. I don't remember what he said except it doesn't matter cause the treatments are the same and they are alomst the same. That ticked me off. It DOES matter to me. I think I have Crohn's mainly because I had a fistula and I have never found one person with UC that has had a fistula. Sorry about your misdiagnosis, it probably happens more than we think. It is a shame that there is so much confusion and unknown with the two diseases. You would think by now with all the technology there would be better meds for us. I am sorry about your situation.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate