What a horror this must be for you! I am so sorry to hear of your great pain and torment. I have a daughter with Crohn's disease. She was fearful of an eventual need for a colostomy, but she never ended up needing one (yet). She is 29.
I was diagnosed with anal cancer, and after chemo and radiation to reduce the tumor, I did have to undergo a permanent colostomy. Hence... I joined this site. But I rarely come to it. I actually am squeamish and get fairly sickened, reading the awful details others endure. My own have been horrific enough, but your situation sounds so painful and terrifying.
My daughter took biologics for the Crohn's and they helped a great deal, but then she ended up being diagnosed with systemic lupus, which she had probably had since childhood, but was undiagnosed. When she aged out of my insurance policy, nobody else would insure her, so she began researching everything and treating herself with natural supplements, which, as it turns out, keep both the lupus flares and the Crohn's flares under control.
She does find herself flaring when she runs out of supplements for a month or more, so she knows they are really helping.
I know it's not legal to give others medical advice without a license, so she won't likely be blogging about what she's doing, but I just wonder if you might get some relief if you take some of the supplements my daughter uses. I could read the labels from the huge bag in our kitchen, but I am not sure what each one does for her. She takes some for the lupus, some for the Crohn's, and some to counteract the horrible side effects of the drugs she does get occasionally when a flare is bad enough to send her to a free medical clinic. Without insurance, she can't afford to pay for doctor visits. Prednisone is about the only drug they'll give a 'poverty case' patient... but its side effects are severe and she hates the skin breakouts and weight gain it causes. She really does feel best when she's able to afford to keep taking her supplements.
If you'd like me to ask her what she takes to keep her guts healthy, feel free to write. Also, she found the book "Diet for a Bad Gut" helpful... or was it "Eating for a Bad Gut." I'm not sure, but if you google both of those, the title should show up on Google. You might check out a copy at your local library and see if the advice helps you.
Good luck to you. I hope you are relieved of pain and bleeding and other discomforts soon.
