My condolences to you and your family. I've been living with Crohns for more than 20 years now, and I've always considered myself very lucky. I've only needed emergency surgery once, and the only other time it was life threatening was when it involved my esophogus, and I was unable to eat or drink anything for almost 3 weeks, but huge doses of prednisone brought it under control.
People don't seem to realize just how serious inflammatory bowel diseases are, and most don't realize that there are people who die from them.
And unfortunately, many seem to be "drug warriors" who will deride any research that might possibly involve something that they don't approve of.
Again, I'm terribly sorry for your loss.
Mark