I had proctitis when I was initially diagnosed and it ended up pancolitis fairly quickly. I also had flare-ups come on very quickly. It was stressful because I knew that at any sight of blood it could be a downhill progression into the unknown very quickly. I am sorry you're in the hospital. Did you get the results of your stool test? Are they going to do a scope to get biopsies?
Stool test isn't back yet, but I'm not hopeful. The public health stool test here is very limited. No flesh eating bacteria? Check. No shellfish bacteria? Check. No salmonella, listeria or e. coli? Check. It's not exactly comprehensive.
They won't be scoping me because my inflammation is too high and it will just create more problems. My medical history is such that scopes make me flare. Last time I was scoped during a flare, the inflammation exploded so much afterward that I had painful rectal prolapse that lasted for 3 months. Two words: never again.
My CRP went from 160 to just under 100 in a few days of IV pred. Hopefully the trend continues. My hemoglobin also continues to drop, but they are giving me an iron IV right now. It's that waiting game now.
I'm like you... by the time I notice bleeding in my stool, it's almost too late. The cascade starts and literally nothing will stop it. The GI at the hospital here suggested that I have a fecal calprotectin kit on hand for the future that I use to check my levels periodically, even if I have no symptoms. If the levels rise, then I should do prednisone ASAP. I like this idea because things can change VERY fast.
My mistake this time is that I waited to start pred. The reason is that oral pred severely irritates my stomach and GI tract, even if I take it with food. The drug itself makes me bleed more, so I try to avoid it and see if I can get my flare under control. Of course, I never do, and then I end up in worse straits.
This disease is very frustrating and I am doubly frustrated by how severe it is in my case. I hear about
all these people with UC who complain about
having to go to the washroom a lot at work, or make bathroom stops in their cars during rush hour. Meanwhile I'm like... wow, you can actually go to work???