Morning all.  I think my mom had directed some of you here and I know I have sent some here too, so I'm going to make an honest effort to keep all updated between the crazy pain medicines...

The PICC line is in and I admit it's a better option, but it keeps kinking on the outside where all the tape is.  Since it's a sterile environment, they have to wash up and put gloves and a mask on to even mess with it.  Last night, they tried removing all the tape and repositioning, but it didn't help.  It's right on the upper part of my left arm on the inside where when you bend your arm, your muscle comes up (not that I have much, but enough to cause a problem!).  So, once we get this under wraps, it'll be great.  It ached a bit yesterday, but it's really been trouble free since.  Porbably one of the best decisions we made yet.

I had to ask for 2 doses of pain meds yesterday, which is far better then Saturday as I think I had 12 or better shots of the drug.  Today, I woke up and in about 15 minutes time, I had spasms and went 3 times.  So, my pain started to come on and while not as strong, they have made me promise if I get to a 4 (and some tell me 3), then I ask for the pain meds. I hate doing that. I usually take nothing more then Tylenol, but I've been on an opiate stronger then Morphine for the last few days.. It just feels like too much drug, but I have to understand that the drug wears off in time as far as effectiveness and since we know where this pain has been, it's kind of a necessity.  The hope is I don't need much more of it.  I don't really like pain meds period.  Plus this causes my nose and scalp to itch.  And, then I sweat for hours on end and need new sheets and a bath.  Dr. Rusche just wants me to get a little better each day..so that is today's goal, better then yesterday.

The dietitian came in to see me too.  I'm on an all clear liquid diet  So, I can have: chicken broth, jellow, icees, apple juice, grape juice, tea, sprite, diet coke, coke, etc... there isn't much on the menu, and to be truthful I don't have an appetite.  But, they are worried.  I don't know my weight at this point, but I'm sure I've lost around 5-10lbs at this point.  As soon as they release me to a liquid diet, I'll be able to have milkshakes and boost and such.  But, my bowel needs to rest.  I am getting round the clock fluids, so I'm staying hydrated and you can go a while without food, but the last piece of food I had was Friday at around noon.. I had 1/2 a chicken pot pie.   So, they said I could go 5 day sin a clear liquid diet before we start talking about getting something like TPN (basically a nutritional supplement in a tube.  Hoping to avoid that.

Oh, and LaDonna came in this morning too.  She's Dr. Prasad's (my local GI/old GI) nurse practioner (NP).  She's fantastic.  Loved seeing her.  She's worried about my hemoglobins.  They fell from 10. something to 8.9 in 48 hours.  So, I'm bleeding from somewhere.  She said all my cultures were negative, so everything is essentially stating this is all a true Crohn's flare.  But, they are checking my labs again this afternoon and if it's not any better, they'll do a blood transfusion.  In addition, she said we really need to see this new dose of Remicade to start kicking in because if not they'll start looking to other drugs such as Humira and Cimzia.  If they can't get it under control with some of these big drugs, they'll will have to resort to removing my colon.  I think the Remicade is slowly kicking in alongside the steroids, but that is a very scary thought, very scary.  I'm sure things are going to be okay.  But, if you are the praying kind, please pray the meds kick in soon.  I do NOT want to have my colon removed... it's a fact of Crohn's, but one I'm not ready for yet, by far...

THanks for all the thoughts and well wishes.  This really caught me off guard, completely off guard.  I knew I was bad, but had no idea I was THIS bad. 

Will post more as I know more...