For months I've been struggling keeping everything under control and I've twice told my Dr that the infliximab doesn't seem to be working for me. I had blood tests and was apparently discussed at some meeting to see what should be done. I've received a letter from the doctors the other day and I just can't believe it.
They think the infliximab is working because my fistula has drained. I had a seton put in last September and started the infliximab in the November by which point the fistula had already stopped draining. They have absolutely no idea what they are talking about!
I've had no further investigations since the seton was put in so how do they know what is happening? They're just guessing. And now they want me to have yet another colonoscopy, which I'm going to refuse, because they clearly can't think of anything else to do.
It just drives me absolutely crazy that for the last 2 years all they do is suggest colonoscopies instead of actually trying to find out why nothing is working.
They think the infliximab is working because my fistula has drained. I had a seton put in last September and started the infliximab in the November by which point the fistula had already stopped draining. They have absolutely no idea what they are talking about!
I've had no further investigations since the seton was put in so how do they know what is happening? They're just guessing. And now they want me to have yet another colonoscopy, which I'm going to refuse, because they clearly can't think of anything else to do.
It just drives me absolutely crazy that for the last 2 years all they do is suggest colonoscopies instead of actually trying to find out why nothing is working.