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Ulcerative Colitis
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Posted 8/20/2013 6:00 PM (GMT 0)
Sorry to be a broken record, for those successful surgery goers, how do you know when it's really time to do it?
Posted 8/20/2013 6:14 PM (GMT 0)
You just know. Your quality of life sucks. You don't care if you are stuck with a bag forever. You aren't worried about scars. You just want your life back.
Posted 8/20/2013 6:34 PM (GMT 0)
I know I'm constantly miserable and have awful QOL, but I don't want a bag forever.  I'm terrified that I'll go through the surgery, rough recovery, a second surgery, and maybe it won't totally cure, and I'll still be on meds and uncomfortable and miserable.
Posted 8/20/2013 6:41 PM (GMT 0)
There are no guarantees with this surgery. Sometimes, after the first surgery, they determine you are not a suitable candidate for a j pouch, whether it is Crohns, or done physical issue that will prevent it from being successful. So if you are not prepared for that potential outcome, IMO, you are not ready and shouldn't have surgery - but keep in mind sometimes that decision gets taken out of your hands if you get too sick.
Posted 8/20/2013 6:43 PM (GMT 0)
That is what I'm trying to prevent. I don't want to have emergency surgery which is why I've made my surgical consultations in attempt to gain more information. I wish it was cut and dry, literally. There are too many what if's...
Posted 8/20/2013 7:23 PM (GMT 0)
Yeah you just know when you have had enough. I remember waking up one morning in agony and saying I'm done with this! I also missed my niece's wedding because I was so ill and that really put the last nail in the coffin.
Posted 8/20/2013 9:00 PM (GMT 0)
Yep, it was the same with me. I was lying in the fetal position in bed at my parents' house (had to move home because I couldn't take care of myself...) and sobbing and saying "I want it out! I want the surgery!". Five days later I was in the OR.

During that flare I always told myself that if it meant getting into remission I could deal with anything -- be it enemas five times a day, a severely limited diet, leaving my home and my job, or daily endless suffering. The problem was that at the end I was enduring all of that and no longer had any hope of getting into remission. I had tried everything and was just hanging on, not improving or thriving. That's when the decision was clear to me.
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