Posted 7/12/2017 6:46 PM (GMT -5)
Sorry if this gets ranty or offtopic or isnt very coherrent, I feel like my mental faculties are deteriorating here so...well, you guys understand.
So. I started flaring around the 1st of this month again. Real bad, probably as bad as I have had it in the decade or so that I have had UC, and most of that time has spent minorly flaring anyway. I'm going 15+ times a day, have had multiple accidents in the last week, I am in near constant cramping and pain and using the restroom itself feels like being stabbed with a dagger. There is plenty of blood in my stool, including frequently "toilet bowl staining" levels of blood, not just "red tint". Eating and drinking water both increase pain so much that I have taken to not doing much of either. I'm not getting any sleep because I have to get up every 90-120 minutes to use the restroom. I think you guys know how it is.
Before this started I was on a long, long taper off pred. I was just getting down from 15 to 10mg when this happened. But I was also due to FINALLY start Humira (long story there) so my gastro basically said wait and see. And when I called back in a few days saying nothing had improved, he said "Ok, go back up to 15mg". Which was ludicrous. It did, as expected, nothing. I held out a bit longer before calling back and got "If it gets bad, just go to the emergency room".
Which I did. There I got the standard treatment, some prednisone by IV, and a new prescription for 60mg for a week before another rapid taper back to 10 (as well as some narcotic pain relievers). I was hopeful at this point. But it's now day 5 of taking this 60mg and for the first time in my life, it hasn't stopped the flare or at least reduced it to manageable levels. I'm gonna have to start tapering down off it after tomorrow in just as bad as condition as I went in, only now I'm also going to be very soon out of pain medication (Which, by the way, wasn't even strong enough to stop the pain) and I am just so overwhelmed. I called my gastro AGAIN today, and got the callback with "Why don't you call us back monday if you haven't improved by then".
I'm so mentally drained. I'm terrified about my condition. I'm in constant pain. And I am being told by the one person who can help me to just wait and see, wait and see, it doesnt matter how bad it is just wait and see. I want to have hope that this Humira will help but...my life right now is utter and complete unending misery and I feel like I have 0 hope. It's not just that all I can do is lay down and be in pain and worry about losing everything because I can't live currently, it's that I don't even see how the **** things are going to improve. Humira is for long term treatment, right? Not ending flares by itself? And as far as I know, biologics all take quite a bit of time if they even work. Going on 2 weeks of this is enough to be this bad, I can't imagine lasting a month of this. Or longer. But maybe I am wrong? Is there a chance that Humira could help within a week?