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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Crohns Disease: in the hospital you go!

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Welp, it’s about 4:15pm right now.  I’m laying in my hospital bed, forcing myself to stay awake.  I’ve been sleeping on and off since I got here at about 2am, thanks to some heavy duty painkillers.  I’m about due for another dose, but am putting it off so I can be somewhat coherent for a little bit.

So with my Crohn’s Disease, I’ve been blessed with what’s called a fistula.  Basically what it is, is an unnatural tunnel formed from one organ to another or from one organ to the skin.  Mine is from my small intestine to my bladder, and I’ve had it almost as long as I’ve been diagnosed.  It had been nearly symptom free for a year, just twinges on and off of pain but that’s about it.  Remicade Infusions seemed to have put it into check.  Until a few days ago that is.

Randomly, it started up again.  Not just a little twinge of pain either, full blown.  We’re talking fecal matter in my urine, sharp stabbing pains, frequent urination ( UTI ), and general aches.  It really caught me off gaurd and quite frankly it was very painful.  On the third day of it ( yesterday ) it was ridiculous.  I was running to the bathroom 4-6 times an hour, just to pee, and was bloating like there is no tomorrow.  I realized I might have a problem when I was still at work during the afternoon.  My stomach was protruding like I was 4 months pregnant, I asked a co-worker if I looked pregnant and she assured me I didn’t, so I went about my day,

After I got home from work, I was just generally achy from being so bloated.  I ate a super light dinner because I had a feeling I wasn’t going to be keeping my food and headed to bed early.  At just about midnight I woke up to a sharp wave of pain.  It woke me out of a dead sleep and before I knew it I was curled up in fetal position crying.  As I was trying to breathe through the pain my mind was going into panic mode.  I knew this pain.  I had to get to the hospital.  Once the nausea hit and I realized I couldn’t walk with the pain, we left the house.

So here I am.  I have another small bowel obstruction, right near the fistula, in exactly the same place as last times.  I lasted 13 months with out being hospitalized but I guess it was just not meant to be.  This time though my boss didn’t have to drive me here, and no one had to break into my car either (long story, I love my co-workers).  Last time, the obstruction itself was very similar.  They kept me hear for a week and gave me iv steroids, the obstruction itself was actually just swelling and it was brought down.  I ended up staying on steroids way too long, but it was a good alternative to surgery.

This one though is putting me in a different situation.  Since it’s in the same place as last time, staff here seem to think that it’s possible scarring, that regardless, the intestine/fistula is not going to get better on it’s own.  Both the douche-wad surgeon and my gi specialist both recommend I have a resection.  Where they basically remove the diseased intestine and during that operation, they’ll repair my fistula and bladder.  They are super gung-ho about it, like sending students in here every 8 hours to ask me if I’ve “put anymore thought into it”.

You know what?  No, I haven’t really.  All I know is that I have the same reasons I’ve had since I was diagnosed.  I’m sure I need surgery, I’m sure it’ll help me in the long run, but good lord it screws me in the short.  If have surgery, I only have a 3-4 day hospital stay, but am not allowed to work for 2-3 weeks after.  Uhm, hey rich doctors!  Single mom right here, are YOU going to pay my mortgage?  I don’t know.  Finances play a lot into it, granted I have Ryan’s income right now, but still.  I don’t know.  I’m really in between.  I know it might put me into remission for a long time, we already know Remicade works for me, and the GI thinks that with that diseased section removed, it could work for even longer.  However, I also know that surgery is not a cure for Crohns.  There is a good chance the disease will come back, just in a different location.  I don’t know.

 

I’m not thinking too clear, maybe it’s the pain, or maybe the residue of the drugs.  I don’t know what to do.  I just want to nap.