Day 2 – It’s 5am – Get out of my room

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Yup, I’m still here, I was roaming around outside of my hospital room today though.  Always nice, I even ran into a couple of my nurses from the previous stays.  I don’t know whether or not to be flattered that I was remembered or not, but oh well.

Things are going alright, the aides and nurses left me alone most of last night so I got almost a full night of sleep (with out pain medication!!) and am feeling much better.  The powers that be let me have some clear liquids yesterday, which trust me, I really appreciated.  The aide that brought me my tea laughed and said I was the happiest patient in the hospital.  Haha, what can I say, I’m easily pleased.

I have been up for quite a bit though, it seems like all the people who didn’t stop by overnight decided to come in at the same time this morning… 5am.  I had a Surgical PA, two aides, my Nurse, and of course someone had to come in and draw my blood.  I shit you not, everyone was in here with in 10 minutes.  I had had grand dreams of sleeping until after the sun came up, but… nope.  After the blood draw I just gave up and ordered a tea.

One of the two surgeons I am seeing stopped in, I happen to like him despite is poor bedside manner.  He is very straight forward and very easily agitated.  He’s not sure what the plan is for me, he thinks I should try eating soon and we can go from there.  However he agreed that someone should have stopped in and gave me an update last night.  So he’s off to check with the other surgeon and my GI to see what’s going on.  *Shrugs* I’m just happy I have one pro-active doctor, usually they avoid me… which I give them good reason to. :)

So as for my Crohns Disease goes, we knew I had a patch of inflammation and a fistula that runs from my bladder to my intestine.  I am getting Remicade infusions every 8 weeks and have been working to control the other symptoms of my disease through diet and exercise.  I did very well, had very little symptoms for almost a year (minus the symptoms from the fistula), I was >< this close to remission.  I had a bad time with the fistula once (when I was a bit late for a Remicade appt), and then just recently I started “flaring” again.  I put quotations around “flaring” because honestly, beyond the obstructions and the fistula (the cause of the obstructions) I haven’t had what I call – normal symptoms – of a flare since I began Remicade almost 3 years ago.  Out of nowhere, a handful of weeks again I started running to the bathroom multiple times a day.  The stomach pains came back and the fatigue worsened, and I got nervous.  I made an appointment with my GI, but before the appointment came I had my Remicade infusion and the flare went away.  My appointment went well, and I went back to normal life.  A couple of weeks after that the flare came back… and an obstruction.

When I got here I had an x-ray and a cat-scan done, and while they did show an obstruction, it also showed another patch of inflammation.  My disease managed to spread to another part of my intestines.  My GI brought up that it’s possible that either A. the dose of Remicade is now too small, or B. my body has built antibodies against it, just like it did with Humira.  So I need to talk to him about solutions to that, either adding meds or changing meds, I haven’t burnt through all the biologics yet but there isn’t many left that he thinks will work.  He mentioned 6mp again, but I had too many side effects and steroids made me nuts.  So we’ll see.  Blah.  I think that’s the part that gets me down the most.  In the 7 years I’ve been sick, 6 years diagnosed, I haven’t gone into a full remission yet, and it’s disheartening that I still might not get that chance.

Ugh, I don’t know.  The good part?  My favorite nurse just started shift, she’s back out there hunting down information and doctors for me.  (she was the one who convinced everyone to let me have tea) So wish me luck!

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