Blood, Mucous, and Gas... it's BACK!

Ugh! So, it's back. I'm on 15mg of Pred. LUCKILY, the D has stayed away for the most part. But, I am having more frequent pain. I'm taking around 4 Norco a day now on average....maybe 3. I try and take it as sparingly as possible. All that aside, I have an appt set up with my colon surgeon tomorrow to discuss pain management. I also can feel my spastic colon coming back. We discovered I likely have this on top of Crohn's back in July. Lovely, eh?

The gas is what is getting me. I can never tell if I can just let it out or if I need to go sit on the toilet because quite frankly, I never know if something will come out or not, if you know what I mean....

Sorry to be graphic there, but oh, the frustration! And, in less then 2 weeks, I'll be on NO meds and obviously, the clinical is not doing a thing for me at the moment. BUT, in 6 weeks, I WILL get the open label drug and if it doesn't do anything, then obviously, my GI will consider removing me from the study and trying something else.

All fingers crossed that I can make it 6 weeks and then GET the drug for SURE and maybe it'll be my miracle! Oh, I MISS remission!!!

I am seriously considering this trial for the long open label part.  I would have to end my rectal budesonide, which will cause me to plummet quickly downhill.  I can totally relate to what you are saying...  Then if I get low dose or placebo...  It's like you said about having to make it 6 weeks.  I am eligible in a couple weeks.  I don't want to get worse again, but I can't stay on steroids forever.

Just wanted to give a virtual hug and say hang in there.  Will they let you increase your steroids?  Probably not.  You are probably on a scheduled taper for the trial...  It's so very frustrating to be in a trial hoping for the best and realizing you are not being helped.