Slice and Dice 2015

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I had my first bowel resection yesterday. Let me tell you, that’s not on the things to do for fun list.. nope. I haven’t had anxiety attacks like that in a long, long time. The day before, lab and the iv team were having a hard time getting blood and keeping me from blowing ivs. I ended up with one on the inside of my dominant wrist. The iv team guy was completely honest with me, he didn’t think it would hold and thought I needed a picc line. At that point I had been stabbed numerous times and my anxiety had gone into full-fuck-you mode.

My surgery was scheduled for 10:30am. Lab came in to try and draw blood and got absolutely none. After the 3rd attempt or so I started to lose it. Had to ask for anti-anxiety medicine. Shortly before surgery, the guy from the iv team blew in to start a mid-line. He was afraid that surgery would blow my last iv and not be able to start another. 4 tries and he got it, but it was pretty gruesome. I’d post a picture, but I don’t want to freak people out. Anyway, it’s much better now that I’m not having an anxiety attack every time someone has to draw blood.

Surgery itself went fine. They removed a small portion of my small intestine and part of my colon. They also were able to detach part of my colon that had decided to cling onto my bladder. No bladder reconstruction needed!

To be completely honest though, the pain is a lot more than I expected. I have a pain pump that I’m just now getting used to using so I can at least get a little comfortable. It’s taken me a little bit to feel comfortable dosing myself, especially due to this one nurse..

Backtrack: there is a nurse on this floor that I’ve been referring to as the Know-It-All-Nurse. She’s the one who originally made me feel uncomfortable here. I’m not much one for pain medication, I don’t take it unless I truly need it. So Know-It-All refused me a shower before surgery because of my continuous drip of prednisone. (I literally had to have my doctor add a note in my chart to unhook me if I ask) So, by cleaning up the best I could, I started to get some pretty bad pain. 8/10 pain. I asked for a half dose of my dilaudid. First thing out of her mouth was a comment about how I should cut down on it.

Excuse me? 1. I wouldn’t be in pain if I could have taken a shower the normal way. 2. I have major surgery tomorrow, and you’re worried about a half dose? And 3. I NEVER ASK FOR PAIN MEDS IF I DON’T NEED THEM.

So whatever. Back to present tense. All day I’ve had my surgeon, the surgical PAs, and my GI telling me to press the hell out of the button on the pain pump. Basically that since I already have inflammation on top of just having major surgery, it’s going to take a lot to make me comfortable. I was having anxiety attacks all morning over pretty much anything because the pain was so bad. I finally got a hang of using it and am halfway comfortable.

In walks Know-It-All-Nurse. She has already been condescending about my not wanting to wear the compression boots because I am up walking and getting blood thinner shots. It took her all of 2 seconds to say “Well it looks like you’re using your pain pump a lot.” Duuude. I’ve never had a nurse talk to me in such a condescending tone. No shit I’m using it a lot. I’m supposed to. I’m already back on the verge of panic and all it took was her showing up. Now I’m such a bundle of nerves that I don’t even want to ask for my anti anxiety medication, I don’t even want to deal with her.

Seriously, the rest of the staff here have been phenomenal but this has been the most nerve-frying, painful stay I’ve had here. This nurse is making it 10 times worse. I’m almost tempted to ask for a different nurse.

Arrgh.

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Grown Up Stuff: Because I have nothing else to do.

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Another dreary day here in the hospital.  Looks like it’s pretty damn depressing outside too, which frankly makes me feel a little bit better.  I always hate being locked away here when it’s gorgeous and sunny outside.  Here in the Midwest it sure seems like Spring/Summer are never going to arrive.  It’s the middle of may and we’ve only broke 70 degrees a handful of days, it’s not snowing which is a definite bonus, but not quite nice out either.  I’m pretty sure that it’s going to be a very mild summer.

Anyway, I am feeling quite a bit better.  I’m still moving a bit slow and am severely fatigued, but I’m willing to bet that that’s more due to the lack of food… the last solid food I ate was 6 days ago.  I’ve been able to have some liquids for the past two days, but the nurses are still working on getting a “general/soft diet” approved for me.  Wish me luck, my appetite is coming back and I’m starving!!  I certainly don’t feel like roadkill like I did earlier this week though, and I reluctantly have to give credit to the drug cocktail they have me on (no pain killers for more than a day!!) as much as I don’t like it.

So normally I refuse Prednisone as long as I can.  I hate that damned drugs and pretty much anyone with an autoimmune disease does.  It’s just a horrible, horrible drug… but it works.  It’s the quickest way to get out of a flare (which is perfect for me right now since it seems like it’s the new section of inflammation that’s actually causing me so many issues) and I need to be back at a functioning level as quickly as possible.  So back when I was still in the ER, they started the IV bag before I even had a chance to ask what it was, so back on Prednisone I go.  I’m looking forward to getting better… but adding moon-face, skin problems, skin pain and joint pain/swelling to the mix?  Oh, and I can’t forget my favorite side effect… Mood Swings!  Booyah.  In people who already have “mental issues” (I have an anxiety disorder) it brings it out a bit more.  *Sighs*  Oh well, I’ll just count down the days until I can get off of it.

Besides Prednisone, it looks like we’re almost 100% sure that I’m going to stop taking Remicade.  My GIs want to switch me to Cimzia, I’m not looking forward to having to fight tooth and nail to get my insurance to cover that, but like I said before, my doctors have already started that fight for me.  From what I understand, I’ll also be upping the dose for my 6mp as well and most likely be coming home with every Crohnie’s favorite antibiotics (just guess).  (Side-note: since Remicade/6mp are both classified as Chemotherapy Drugs now, I have to have a special nurse come and give me my meds… pretty freaking weird if you ask me.)  So hopefully with all of that (and I’m assuming I can discontinue the Entocort, since that was just us trying to avoid Prednisone) I can start getting back on track.

Whatever.  All I know is that I’m super antsy and the longer I stay here, the lower my mood slumps.  I’m missing my kiddo pretty bad too (even though it’s only been a day and a half since I last saw her), she’ll be coming up here for dinner tonight after school, so I’m excited for that.  Hopefully I can go home soon, I miss the boyfriend and the animals too.  *Sighs*  Back to surfing the internet, it’s almost time for me to harass the nurses for food again.  I already balanced my checkbook and paid all my bills… I ran out of stuff to do so I did the adult stuff that was on my list.  Blah.