Poopydoop you make a valid point about steroid usage. I'm back on prednisolone foam enemas which has reminded me to book my next Dexa scan as I tick pretty much every box for osteoporosis risk.
The steroid risk is scary. My DEXA scans have been up and down over the years. During remission periods, I've been able to rebuild skeletal mass quite effectively with various protocols, but it only works if remission is sustained. Start steroids again, and you start losing again. Modern medicine's recommendation of "take calcium" is not helpful. There's a lot more that has to be done. Sometimes it feels like a merry-go-round.
Colectomy and ileostomy are also scary, especially if there are questions about
whether or not you can get a j-pouch, or if pouchitis will happen. I know someone who got a colectomy because a j-pouch was promised, then their diagnosis was changed to Crohn's and they said sorry, tough luck. He wouldn't have had surgery if j-pouch weren't an option. This disease is a nightmare and the treatment options
open doors to possible new nightmares. I am traumatized, severely. I have severe complex PTSD from having UC and people who write that off by saying surgery will make the nightmare go away are pretty much gaslighting. I wish there was more compassion and less defensiveness. My only agenda here is to learn all I can to mitigate this nightmare, from ALL AREAS OF MEDICINE, not just conventional.
I frankly feel that the choice between toxic medications and surgery is a joke. They are failing us. And the alternative health world is so all over the place. Some things work, some things don't, but honestly at least they are trying to come at it from a different angle. Yes I am angry. I am not angry at patients, or people who get ostomies, or people who decide not to get ostomies. I'm angry that all the bureaucratic red tape, economic corruption, and human lack of priorities is keeping so many people ill, while the IBD rate continues to rise insanely in the western world.
I hope this clarifies where I'm coming from. Love and compassion to you all.