I was just wondering how many people who have Crohn's disease with an ileostomy are on preventative medications, i.e. Humira, Simzia, Remicade. And how soon after your ostomy surgery did your GI doctor put you on these meds, or were you always on them?
Before my surgery, I had been on all the typical meds over a 10-year period, starting with oral meds, then 3 years of Remicade, then a few months of Humira. But a couple of months into the Humira treatment, I started having a reaction. It turned out to be vasculitis. While I was going through that, my GI doctor was diagnosed with stage IV bladder cancer and died within months. It took a long time to figure out that it was the Humira that was causing the vasculitis, so I kept using it. But once I figured it out and stopped using it over the next year, I was not on any medications for my Crohn's AND I was dealing with vasculitis and every single one of its symptoms, and was very sick, so I moved back home with my family and had to quit my job.
Once I moved, I was in a different state with no doctors, no Crohn's meds, and started having the worst flare-ups I've ever had in my life, which led to my ostomy surgery. But while I was in the hospital, my insurance got cut off, so I did not have any care after. While I was in the hospital, I literally had every kind of complication possible happen, and the last 1.5 years have been spent recuperating. But again, I have not been on any Crohn's meds.
I'm worried that since I have not been on any Crohn's meds, I am just going to stay this sick, and a flare-up will always be right around the corner. I have insurance now, so I am about to see the doctors who I was seeing just before and during my surgery.
It seems like I should be on something for the rest of my life to prevent losing any more bowel loss.
Thanks, Nora "Calico"