Well, I guess I can change my username now from "Considering" to "Getting"...
Just met with my surgeon today, and he basically said that my colon is shot---about
50% of my colon is strictured due to scar tissue from having Crohn's for 12 years (I am 26 now). I have recently been having a lot of stomach pains when I eat, off and on, due to the stricturing.
The only choices I have: live with the pain (which can be managed a bit by eating lots of liquids and not a lot of actual solid food) OR have an ileostomy.
They told me that I should have this done in the next year at least.
I was hoping and hoping that they could just give me a resection, but I don't have enough "good" colon left for that.
My biggest questions/concerns:
1.) It seems like many of you ladies say that you cannot wear your normal clothes afterward. I keep picturing myself in high-waisted pants or elastic waist pants and shudder. Not being able to wear normal clothes would be horrible, and make the after surgery adjustment even harder.
2.) What about
sex? Do you wear something to cover the bag during sex? If so, what? If so, does your partner find it weird/distracting/a turn off? I have a fiance who is very supportive of me, and says we will get through this, but I know the adjustment period could be very trying...
3.) How often do you have to empty? I am a teacher, and literally cannot just run to the bathroom whenever I want--Usually, twice per day is the most I can even get to the bathroom! Would this be enough to empty the bag sufficiently?
4.) Has anyone had a child after having their ileostomy? We really want children, but I was hoping we could have them before I would be forced to get an ileostomy...What were your experience like?
I seriously cannot believe this is happening to me. I know it is 99% attitude, and I have read SO many posts like this one, but when it is You, it is different.... I know I can get through this if I have to, but why me and why now?
Any input on the questions above would be greatly appreciated. This seems like such a helpful and supportive environment...it cheers me up just to read the posts. :)