I lived a very full life in my 20's. Traveled a lot, learned languages, got education. Had I known that those were going to be my best days, I would have done things differently. I would've kept traveling instead of going to school and doing the responsible things. I would've focused more on having fun. Everyone says, "Your best days are ahead of you." At this rate, I highly doubt it.
The thought of surgery doesn't scare me. It's the risk of permanent complications that scare me. It could mean trading one unfulfilled way of living for another. I've read lots of positive stories about
ostomates who are so happy they got surgery; and I've also read a lot of horror stories. If anything went wrong with surgery, my j-pouch, or my ostomy, it would just feed into my PTSD story about
how life is out to get me and I would go crazy. I can't handle anymore trauma. Something like that would push me to suicide, honestly.
I really don't think modern medicine is ever going to cure us because curing us is not their priority -- making money is. They can't make money unless we are dependent on them and they create dependency by creating bogus medicine. Take for example Fecal Microbiota Transplants (FMT). The FDA banned it for all but treatment resistant c. diff. I have personally spoken to doctors online who have patients that are dying of c. diff but they can't jump right to FMT because they haven't tried all the other treatments yet. Our medical system is unethical and greedy. The only way a cure will happen is if some independent researchers go renegade and invent a solution, like the team working on the Crohn's MAP vaccine in the UK with independent funding. But big pharma? Forget it. They will sell us snake oil to treat symptoms but they have no interest in curing us. It's not for lack of technology or expertise, it's just screwed up human priorities. I have been around medical people for years and it's been part of my education. I know the way the system works against earnest people who really are looking for a cure. People who propose research into anything that threatens the bottom line of corporations don't get funding. I've seen it countless times.
I can walk and get out. I just can't do any of the things I really love. I can't hold a job, I can't travel, I can't eat most foods I enjoy. I can't date nor would I want to because what partner would have me. Basically my whole way of living has been destroyed and I am just coping. I don't have friendly neighbours. I live in a typical big urban city, and unlike 30 years ago all cities are the same now. All my generation is obsessed with career, money and affording housing, so they just don't have the time. And being disabled is isolating in any decade, especially when your disability involves bowel movements. Last night I was invited to a party... I couldn't go because I was exhausted and had to sleep for 3 hours in the evening. It's now 5am and I'm wide awake because I woke up with pain. I got offered a temp job today to make some money -- will I be able to go or even perform adequately? Not sure. I'll have not slept very much.
I landed my dream job last year and lost it within 3 months due to a flare. Really, there is no point anymore. My life is about
suffering and isolation, and that's about
it. Any meaning or purpose I invent gets wiped out by an eventual flare. The only satisfaction I sometimes get is by sharing the different treatments I've tried that people may be unaware of because maybe it will at least help them. I keep trying things and they keep failing. I'm pretty much at the bottom of the barrel now with what I can try, and I've really, really tried everything.
Last month I created a DNR (Do Not Resuscitate) order through my doctor. If I have another major flare again I'm going to refuse treatment. Can't handle anymore trauma. Euthanasia is legal here but not for UC because it can be "cured" with surgery so I'm going about
it the only way I can. I think calling that a "cure" is just part of the bogus agenda of modern medicine because they can't admit their utter failure to treat this disease. "Cured" actually means you walk away with your body (and sanity) in tact, and you go back to a normal life. If they can't offer me that then I'm not interested. Ostomates aren't "cured" anymore than a soldier is "cured" when you amputate his leg after shrapnel injures him. They aren't cured, they're survivors.
Post Edited (Connor77) : 2/17/2018 6:28:46 AM (GMT-7)