i have a story like yours too, i had UC though (great sentence btw!) anyway, i was 21 when i got sick, missed all my 20's too sick to do anything, no partying and going out like i should have been. Then when i got pregnant at 27 i was all better the whole pregnancy it was awesome! so when i had my son and i got sick again,it was even worse because i had been well for 9 months!
this is my corny last straw story, i missed a lot of my son's life, one time i couldnt' even go with him to get his shots, my husband had to take him cause i was sick. i couldnt' take him to the store, i couldn't even put him in the high chair, the poor baby was playing in the bathroom! had a drawer of toys in there.
Well when he was a little over one, it was july and we were at the beach with my family, and even though we had taken my kid to the beach before (i was sick then too, but not as bad) but this was the first time he had been able to play in the water and stuff, and i had to watch him leave and go to the beach his dad and with my mom and dad and my sis and her husband while i sat in the room too sick to go, waiting until my stomach would calm down enough.
and that was it, i can remember it, i was standing in the kitchen of a rental house, and i said, i'm having surgery (i had never even considered it, noone had sugguested it, hadn't looked into it anything) i'm done, i'm not missing anything else! well i went to the dr and he said surgery is a good option but why don't you try remicade first, if nothing else to get you healthier and off the steroids, so,against my better judgement, i tried it, it worked great for 5 months, then it went back to awful, so i went to the dr and i said, look either you take this colon out or i will take it out, i think i really would have. so he said, oh get a jpouch, and i said no i don't want a jpouch, so he sent me to a surgeon who was totally supportive and said, you know if i had UC or i had a family member with it, i would suggest a perm ileo to them too. he said, you know a jpouch is a great option for some people, but some just don't want that. I said, no i want this over and done, i want my life.
So april 17, 2007 i had my surgery, i call it my new bday cause that's when i got my life back!
and yeah it was scary, and it HURT, and it was gross at first, getting used to it was not the easiest thing in the world, but when i made my decision i thought, i KNOWi HATE my life now, so i can get surgery and i MIGHT hate it, but most likely i will not, reading this board really helped me. it's a learnign curve and it takes a bit to get used to, but when i stopped on the way home from surgery and got some fries and a milkshake without worrying about the bathroom I knew it was worth it!
And there are times, very rarely, that im like, ugh this thing is annoying! but i look at the crayon on the shower wall that my son drew while i was sick and he had to play in there, and i remember why i did it. and there hasn't been a day that went by that something doesn't happen that makes me say, wow im glad i had surgery!
anyway, there is nothing i can't do, nothing i can't eat! so it's a total 180 from UC! that's my long story, lol.
there can be other options, i had some more, i didn't try them, i didn't want to let UC take over for me anymore, i didnt' want to put all those dangerous drugs in my body and wait on them to work and then wait on them to fail.
So please don't let anyone make you feel like you are giving up by choosing surgery, you aren't you are winning you are taking your life back!