Prednisone Blahs and Crohns Pain

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I think I jinxed myself earlier.  I had been talking with my Dad and told him I was feeling alright when he asked.  As the day has worn on I’m starting to feel pretty crappy (no pun intended).

That’s me right now, I’m sitting in my car on lunch. What you can’t see in the photo is how bloated I am, and my face doesn’t look quite as swollen as it feels.  I have what I call a prednisone fog/headache going and just generally feel achey. 

If I could do anything right now, I’d go home and curl up for a nap until Ashley gets off of school.

I guess I shouldn’t complain (too bad) because I did have some moderately low pain days, but it’s always short lived.  Add the prednisone side effects and I am miserable.

I did talk to my GI nurse earlier today though.  They finally got the blood test back.  My body did develop antibodies against Remicade, so I have an appointment to go over Cimzia next week.  You know, I’m actually pretty down about it.  Remicade worked really well for about 2 years, switching to injections again isn’t something I’m looking forward to.  Not only that but the battle with insurance has just begun.  Add that to the almost $20,000 I’ve racked up in hospital stays this year (pretty expensive sleepover if you ask me).  Le sigh.

Oh well.  Gotta keep moving forward.  What choice do I have?

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Home Sweet Home – Where you do your own laundry

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Woke up before 7am this morning, which is honestly sleeping in a bit for me.  Immediately noticed that the dog (who smells like butt) had been sleeping on my favorite blanket all night.  While I was groggily throwing the blanket into my washing machine, I realized… at least at the hospital I don’t have to change bed clothes or wash their gowns.  Laundry is for the birds man.

I am home, I was discharged late Friday.  I came home and promptly fell asleep on my couch curled up with my own blanket, pillow and my kid.  It feels good to be home.  I’m feeling a good deal better (if Prednisone is good for nothing else…) and am enjoying being outside of that small little hospital room.  I have about 6 new prescriptions, which I am doing my best not to forget, and I have to make an appointment with my GI’s office to go in to discuss Cimzia and my insurance.  For now though?  I’m just enjoying being home.

There’s something disheartening about being stuck in a hospital room.  Especially when you reach the point that you *know* that all the meds coming through your IV come in pill form and your off of pain medication.  I’m not a fan of vitals at 3am nor am I a fan of a newly graduated dietitian telling me how to eat, when I’ve been doing this for 7 years next month.  Don’t get me wrong, everyone I came in contact with was very sweet, it just gets to me when I start feeling better and I have to reign in my tongue a bit to make sure I don’t smart off.  When I’m doing the “Oh my god what’s wrong with me now” thing, that’s one thing, but other than that?  I want to go home.  At least no one charges me anything to go home and not eat and sleep on my own couch.

See, there I go again.  Haha.

Anyway, I have some things to do and a breakfast to figure out.  I hope everyone is having a great weekend!

Rainy Day

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I do have something positive about this hospital stay. It’s crappy outside! Yes! For once I’m not missing beautiful weather. It makes me a tiny bit less anxious to get out of here.

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So I’m feeling a bit better today. I still have pain in my belly, but not enough to where I want the heavy painkillers. I’m able to walk around with out bending myself in half due to pain.

I can tell that I’m still not “healthy”, but I am most definitely happy to see some kind of improvement. I’m really hoping they will release me over the weekend. Fingers crossed anyway.

Anxiety Attacks and a Healthy Dose of Fear

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It’s 2:30am and I just moved up into a room from the ER. Yup, you guessed it. Back in the hospital for Crohns related crap again.  You know, last year I made a comment somewhere along the lines of “Woohoo! I haven’t been admitted in a whole year!!”.  I’m pretty sure I jinxed myself, because here we are, second expensive sleepover thus far in 2014.

This one’s a little more than my average small bowel obstruction.  Apparently they are seeing more inflammation and maybe even a possible infection on top of a partial obstruction. Last March we had increased my Remicade and put me back on 6mp to help prevent my body from creating antibodies.  One of my GIs is concerned that despite that, Remicade may no longer work. Submitting lab tests for those antibodies tomorrow.

So I’m just stuck in this hospital limbo now until they pick a direction to get my body working again. It’s definitely weird though, I’m having such a hard time this run.  Partially due to the bad news about my health, but also because I’m on a different floor than usual. I don’t have any of my nurses or aides that I’m used to. To be completely honest, I’m having panic attacks damn near back to back. 

All I can say is I hope this hospital stay is brief and ends well.  Wish me luck.

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!