Hi Andrina I'm sorry to hear you have to suffer so much
I hope something like stelara could be an option.
Maybe its a long way in the future but some hospitals in europe have been having luck with stem cell transplants for highly refractory crohn's disease. Basically they give you chemotherapy to re-set your immune system. It is risky because you come out with no resistance to infections and have to stay in an isolation ward for some time, and some trials did result in patient fatalities. On the other hand, around 70% of patients could go medication free after they had recovered. They had good results in Belgium and the Netherlands. Other countries fared less well. I think it would take years before such treatments could become more mainstream (or maybe they are abandoned due to safety risk) but I'm just putting this out there to show there is work being done to help the difficult cases (I also read in dutch a review by a patient whose crohns had been so severe that she couldn't eat any more due to inflammation in her mouth and oesophagus. She said the treatment was hard but worth it)