I don't see where your thinking is wrong or crazy. I am having surgery this Tuesday, the 27th. I am not on my "death bed" so to speak but the disease has taken my life away from me completely. No outings, no trips that are not doctor appointments, I have no life outside the washroom. I had been thinking the same thoughts as you prior to my most recent hospitalization and that is when "fate" stepped in. I was in ICU for seven days and almost didn't make it. The disease went from being a really bad inconvenience to almost fatal in a heartbeat. This is when I decided I needed a more aggressive approach if I wanted to see my children graduate.
I too have never been on the Remicade or Humira and my GI even said that with the problems I had with the Imuran that it increased my chances of having problems with them. I talked with him about it first and he also pointed out the continual use of medicines for the next 30 plus years and all of the damage that my other systems would face throughout that time. It shocked me that a GI doctor would say that considering he was basically "giving up" one of his patients by suggesting surgery. The surgeon let me know that the one big change everyone notices is feeling "healthy" when it is all done. I have heard from others, and hopefully some will chime in here, that the slow progression of this disease will keep a person incoherent to how sick they are. We tend to get use to what we go through and just pass it of as normal. I have spent this week comparing how "healthy" I feel today compared to say ten of fifteen years ago and I can see that I don't accomplish half of what I would have done back then.
I can't say that I would have come to this conclusion this quick without my little trip to the ICU but I can say that I was starting to entertain it prior to so I would have eventually gotten here. I would say continue what you are doing which is asking questions and researching. The surgery would go better if it is done when it works for all involved and not when that is the only choice left. Surgery is just one more way of treating (actually the only known cure) of this disease. 25% to 40% of all UC sufferers eventually have the surgery, so it is one of the main ways of treatment if you ask me. Those stats are from the Mayo Clinic so I would guess the accuracy to be better than most. You said that you could still find a way to control the colitis but in all actuallity you may be letting it control you. I tried working around the disease and have adjusted so much that I ran out of adjustments I could make, so much for me controlling it. I hope others who have gone through it already can give you better advice then me since I am just starting the process.
I just glanced down the list here as I was thinking of posting, and you already posted what I was going to ask/say!!!
I am in just about the same spot as you are right now. I am starting my first Remicade infusion (I have UC) in July. I am thinking of just saving myself the time of trying Remi, having it fail like all of the other meds have, and then having surgery. My husband is a nurse, and thinks that I am crazy to not "want" to try Remicade first (I am still scheduled, but want to talk to my GI first).
I just don't think that over 5 years of meds is great, especially the steroids and immunosuppressants. Remicade, Humira, and then all of the others (in trial stages) seem more scary, not to mention the cost. I think of all of the things that I miss being chained to the toilet. I want my life back!
I am currently in a flare, but this one seems less intense. My cscope in Feb showed that this time was left sided UC, and not pancolitis, as before. My longest remission was 6 months. When is enough... enough? How bad off does one need to be to have surgery?
I think that the j-pouch sounds like a good option for me. Does this have to be a 2 or 3 stage process?