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 She’s the one who originally made me feel uncomfortable here.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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Have a Personality : How to get a Rebellious Patient to Like You

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I am a huge pain in the ass when it comes to being a patient.  I am a control freak, so naturally, having a chronic illness takes away some of that control, add in the doctors who seem like they are just dictating the remaining happiness in my life… and there’s me.  I’m that patient that the nurses adore and the doctor’s loathe.

In order to get the feeling like I have some sort of control over everything, I have a habit of researching each and every drug I take or procedure I have.  I don’t take medications that I don’t deem safe, or I don’t want to (unless my life depends on it), and I most certainly don’t undergo procedures if a second (third, fourth or whatever) opinion deems it not yet needed.

I’m that patient that the nurses remember because I argue the shit out of anything I don’t agree with, or straight up refuse if I haven’t researched it.  I’m the one who you can usually find the nurses and aides stopping in to say hi, and tell stories about things I’ve done, doctor’s I’ve pissed off, or “remember that one time you went AMA and threatened to sneak down the stairs??”.

My first GI doctor was legitimately a bitch though.  She really was.  Her name started with a W, so she was immediately re-named Dr. Wench.  After having peri-anal surgery, she decided that I had Celiac Disease when I first started getting sick.  8 months, 80lbs, and almost dying- later, I had started ER-hopping because whenever I called Dr. Wench, I was told “You must have some gluten somewhere in your diet, otherwise you wouldn’t be sick”.  By chance, in the ER of my now “home-hospital” I ended up with my last GI doctor.  Boom, Crohns Disease.

That first doctor did a number on me, because of her (lack of care) lack of research and refusal to listen to my symptoms, I missed the first year of my daughter’s life.  From there on out, I treated each doctor the same.  They were the enemy, they weren’t looking out for my best interest (which admittedly, some don’t), and there you have it… I became *that* patient.

I was a horrible patient with my last GI, whom I periodically graced with my presence through out almost 7 years.  He was great, by the end of our “relationship” he would even give me drugs to research and listen to me if I refused drugs (even if he didn’t agree).  I ended up switching to Entyvio, so with his lack of knowledge of it (it’s a spanking new drug people), I switched to his counterpart.  He was free of me, and I was nervously awaiting meeting my new GI.

At this moment in time, I’m writing from my hospital bed.  I’ll put up another post about the why’s later on, but yesterday and today, with some interaction with my doctors and a surgeon who’s minions know me by face, name and cat scan, made me have that “Eureka!” moment.  I finally figured out what makes me like a doctor (and why I’ve liked 90% of my nurses), what that little bit of something I’m always looking for is.

Show Your Personality!

Once I met my GI, I instantly warmed to him.  He listened, he laughed at my half-assed “You don’t know what you signed up for Doc, I’m not a good patient” comments, and he took the time to listen.  Score one for GI.  I had only seen him once in office, but was much more content already, so when I had to come in to the ER this time around, I was VERY comfortable talking to him and telling him everything I felt, both physically as well as my fears as to what my disease was doing and to what meds I would end up on.  He listened, re-assured, and promised to come back the next day.

Well, when he came in yesterday, I was pain killer free, and he had asked me about something I said the day before when I was all full of dilaudid.  I cracked some joke about not having any clue, and painkillers being my friend through puke-fest 2015.  Without blinking he cracked a smile and made fun of me for being all doped up when he came in.  I laughed, the boyfriend laughed, and he laughed.  We finished our chat/game plan, and I settled in for the night with that feeling that I was about to realize something… but couldn’t put my finger on it.

The surgeon (who I’m just going to refer to as “my surgeon”, because he’s been bugging me for a year or so now, so we all know he’ll be the one cutting parts out of my innards) came in today, again, he’s usually in my little hospital room every day I’m here… ever… with everyone of his PAs rushing to catch up.  I think he’s caught himself a cold or something, but regardless, he came in, admitted he had a long day, and literally flopped down in the “guest chair” with one leg over the arm rest.  For the first time since I was introduced to him, I had an honest to god conversation with the man, (and his little minions) and we came to an agreement about surgery (again, another blog).

As he left, that Eureka! moment hit and I finally realized why all of a sudden I wasn’t being such a pain in the ass.  After years of fighting every step of the way, all of a sudden I was agreeable to their recommendations (I still researched them though) and I actually enjoyed my conversations with them… I felt comforted by their opinions and recommendations instead of wary.  Both of my main doctors (now), my GI and my Surgeon, managed to show some personality to me.  Granted, one was because I think he was so physically exhausted he couldn’t stand up much longer, but still.  I got to see that they were people.  They were people, just like me.  People who get tired and just want to sit, people who can’t resist a “you’re high” joke or even better “like a good little patient” joke (I’ve never seen a nurse have to gag to hold back laughter before) (also 20+ points for getting that one out, that was 7 years in the making). I finally have doctors who inform me of my options, give their recommendations but let me have a bit of control with what happens with my life.

I think with nurses, they have always been trained to play a comforting, almost maternal/paternal role – if not a friend-like role, and by stepping into those tall boots, they naturally let a little bit more of their personalities flow out.  Which would explain why I haven’t had too many issues with nurses over the years.  It just feels good to have doctors that I feel like I can email with concerns or questions and know they’ll answer.  Look at that people, all it took was a little humor and a long day to make me actually like my docs again.

I’m sure there will be road bumps, as I’m still not a like-able person on most days, but hey, I’m finally getting somewhere.

Back in the Hospital

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I am not a happy camper today, actually far from it.  I’m stressed out, anxious, and twitchy.  Thankfully though, the majority of my pain has been kept in check by my wonderful nurses.  I’ve been admitted to my (usual) hospital for a bowel obstruction, got here shortly after noon.  I did the big girl thing for once and came in before it was a full blown emergency and thankfully that has given me a teensy bit of control over the situation (No NG tube yet!! Yay!).  I can definitely say that I’m glad I came in, but it was really hard to make that call without it being an emergency.  Being someone who visits hospitals on the regular, I have a good sized aversion to them and all involved.  I’m proud I made the right decision and so far have handled everything quite well.

Blech.

Blech.

As always though, Crohns gives me a different perspective than what I expect.  Of course I’m already climbing the walls here, but it makes me grateful and appreciative of other people.  Of course for Ryan who has pledged to stay here tonight and for my kid for hanging out and giving me hugs.  To my sister for picking her up for the night and for my dad for the day after.  To the nurses and xray techs who make me laugh when I feel like crying.  It’s a good reminder, one that I need from time to time.  

So yeah, here I am, and here I shall remain.  I’ll update as I go.

Add This to the IV Bag!

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3rd try.

3rd try.

It’s Remicade day again! Half way sad day though, found out my infusion nurse retired.  She was awesome!  I didn’t have to make small talk with her, she learned right away that I don’t like to chit chat.  After almost two years, she got my IVs down to a literal science.  She used me as an example to another infusion nurse ( I have notoriously bad veins ).  She also had some major balls too.  I’m sad to see her go, but I’m looking forward to breaking in a new nurse.

Remicade is definitely needed though.  I’m still having a really hard time managing my symptoms.  Hell, what should have been a simple drive in, turned into an hour and a half with 4 different stops.  I’ve put myself on a soft diet and am drinking my teas, but alas… bathroom bound I am.  The fatigue is ridiculous today too.  I had a hard time staying alert this morning on the way in.  My entire body feels like it’s going through prednisone withdrawl (not on steroids at the moment), or for non-steroid-taking people, like I have the flu… and have for 3 weeks. It’s starting to get too uncomfortable for me to sleep, and now I’m not just tired from the disease but because I’m getting so very few hours of ZZZZZZs.  I’m keeping my fingers crossed that the Remicade will help, I can deal with the complications of my Crohns, but the symptoms on top of it?  Not so much.  What is new this time around is the joint pain.  For the past few years I have had joint pain in my knees and hips, especially before Remicade.  Now my shoulders and wrists are bothering me.  It’s worth bringing up to my doc again, because it’s getting to be a little much.

I don’t know.  Regardless, like I said before, this flare has me down.  I’m doing my best to pick myself back up off the metaphorical floor.  I’ve been putting a lot of my energy towards writing, it’s always helped me no matter the situation.  Beyond writing, I’ve just thrown myself back into music.  I realized the other day I had kind of drifted away from listening to music.  Instead of damn near all day, it was just on the commute into work.  So I made it a point to keep the music going as long as possible.  (On a Punk Rock/Psychobilly kick again.)  It’s definitely easier to deal with the day to day crap if I can turn on some tunes that I love.

For now?  I got such an odd reaction when I asked if we could add coffee to the IV bag, it might be worth taking a couple laps around the nurses desk and get to know the newbie.  :)

 

Bliss: No blood draws at 2am

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I am aliiiiiiive.  Yup.  Not to mention at home.  I flipped a shit yesterday after having to deal with my “assigned” surgeon and his shit-head-know-it-all logic.  I spent the day doing light exercise, sneaking crackers and water to test my obstruction, and basically arguing with him and his team.  By about 4 pm I had it.  I called my nurses in, my doctors already knew I was going AMA, and told them I was leaving by 6:30 with or with out needed paperwork.

Basically what happened was, I have (had) an obstruction in my small intestine thanks to my Crohns Disease.  Second one in over a year.  Just like last year, it’s not a normal obstruction, just swelling around where the fistula is, blocking the way.  So in order to get the swelling down, I need to be on steroids and anti-biotics.  My GI doctor *is* on board with surgery, but also understands that I need to be at home with my daughter and back to work as soon as possible.  The Urologist and Head PA also understood the need to plan out surgery instead of going gung-ho.  So after chatting with all of them and ignoring surgeon boy I decided it was time to go.  All of them know that I don’t stay for observation.  I am planning and going back to have the resection done, but down the line, when I can arrange time off with work, and get everything taken care of house-wise.

I am feeling much better, that’s mostly because I’m at home though.  I always take my bedroom for granted.  Man I missed sleeping in my own bed and THROUGH the night, even if it was just for a couple of days.  I love my 3rd shift nurses and most of them remember me or get used to me quickly but man do I hate being woken up for blood draws and vitals.  So home and rest it is.  My plans for the weekend are to take it easy.  Heal.  And get spoiled by the boyfriend and kiddo.  I’m a lucky girl.

Happy weekend!

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.