Welcome to the forums, Adam!
I'll talk about
ulcerative colitis as I know more about
that than Crohn's. With this disease, there are generally periods of flare ups and periods of remissions. Flare ups is having symptoms - your disease is 'active'. Sometimes a flare up can be mild, so the symptoms aren't too bad. Sometimes they can be severe. Flare ups can last a short time or a long time. Going 25+ a day to the toilet sounds severe to me! But you're not alone. Many people here have had major flare ups.
In a remission, you have no symptoms! Not everybody manages to achieve a remission. Some people stay in remission for many happy years. But that's always the aim. With maintenance medication and treatment, some people manage to stay in remission where they have no symptoms and no inflammation. The goal of treatment is to get into remission.
The measure of flaring is really about
how much inflammation is in your colon. With a colonoscopy they can see inside your colon and see how much inflammation is there. That's what really matters, in terms of seeing how bad the disease is. Your symptoms are usually pretty well correlated with that, though hypothetically it's possible they could diverge a bit (symptoms worse than inflammation might suggest, or vice versa). To doctors, they are really interested in how much inflammation is there. But it's also important how manageable your symptoms are. Because that's about
quality of life! That's what affects us all when we're ill. And it is a huge indicator of how your inflammation is probably doing.
Aside from maintenance medication, during a flare up they will also want to give you acute treatment to try to bring your inflammation down and get you into a remission. Steroids are an example of that. Remicade is a maintenance medication but is also an acute treatment which is used to get people into remission. Something like steroids are too dangerous to be used too long-term so they can't be used for maintenance. Other drugs are good for maintenance but not very helpful at tackling an acute crisis. Remicade is a strong drug, which seems to do a lot of good for a lot of people.
With this disease some people respond really quickly and brilliantly to a certain drug, with others it has no effect. For some unlucky people nothing seems to work. Some people have a really easy ride and for some people it's a living nightmare, frankly! It can also change. For example a few years ago when I was diagnosed they told me my colitis was pretty mild. I thought that meant it would stay that way but it doesn't. I have had more severe flare ups since. It's a dynamic thing, how much inflammation there is. It can go up and down.
But there are lots of opportunities for light at the end of the tunnel even if things are pretty terrible. Surgery isn't great, but if it's ulcerative colitis then it does eliminate the problem. As a last resort, that's not so bad. I believe it's very rare to die from this disease.
Sorry to hear steroids haven't helped you, that's a real 'bummer'!
I don't know what your situation is. Personally I think if your symptoms are as bad as they sound and it was me, I would take time off, but I don't know about
how your workplace operates with regards to that etc. Whether they would give more time off to somebody as ill as you. I don't know. It sounds to me like you have gotten accustomed to really quite bad symptoms and are handling it with stoicism, which is very admirable. At the same time, getting well has to be a priority, and it seems like a lot of suffering to try to continue all your everyday tasks when you're this ill. That side of things is more of a personal choice. But look after yourself as much as you can!
Hope that helps. Also - I am so happy for somebody to come and correct me about
this. I'm not a doctor, so hope I've given accurate information!
Post Edited (~ chicken wings ~) : 5/26/2018 2:31:20 PM (GMT-6)