“Maybe one day something might come along that works” – Rod’s story
My Crohn’s flare ups have been out of control for the last few years and I’m forever in hospital with it. I have both ankylosing spondylitis and Crohn’s disease and nothing ever works for me. They had me on Stelara and Rinvoq and a diet called EEN. It’s where I only have medical supplement drinks and no food – all to no avail. I have many strictures, but no doctor can operate to remove them because I have a very complex stomach, and I almost died a few times when an ulcer broke open inside me.
They had to basically cut me open on the spot to try and stop the bleeding, it was terrible. The cause of that was from taking prednisone over a long period of time. That used to be my back up plan when other therapies failed so now I have no back up plan as I can’t take steroids again, it’s awful. This EEN diet doesn’t work for me either but I just do what I’m told.
I’m doing everything I possibly can to stay out of hospital, but I still end up there. Maybe one day something might come along that works.
I have a very good gastro and a very good professor for my ankylosing spondylitis.