When I feel better…

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Anyone with a chronic illness can vouch for me here. Sometimes, more often than not, you’ll make plans or put something off until you feel “better”.

There’s always the argument that you can’t just waste your life waiting, which is promptly followed by put your health first! I end up doing a little bit of both and it’s just left me frustrated.

I can’t tell you how many things I’ve missed out on because I didn’t feel well and wanted to put myself first. I also can’t count how many times I’ve made myself even sicker by doing something so I didn’t let life pass me by. No matter what you choose, part of you always gets the short end of the stick.

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Well, hopefully things start to change here soon. I’m back in the hospital with another obstruction. I feel bad because this time Ashley got upset at school about it, however she’s now in sleepover heaven and “never wants to leave” haha, but still. I miss my monkey, I wish I was at home, but this time things might go a little differently.

So yeah, obstruction. Part 3 in 2015. Totally lame, it’s mostly caused by scar tissue at this point. After last month I went home and stuck to a low fiber or soft diet to make things easier on my insides. Both doctors (surgeon and gi) wanted to give Entyvio a chance to work before the big slice and dice.

So the second week out, I had what I think was a partial obstruction just from moving from soups to other foods. It passed though, although I figured out over the last weekend that I was on borrowed time. My stomach stayed acting up after eating fried eggs out of all things. By Tuesday, I knew I was pretty much screwed when lunch kicked my ass.

I had an MRI yesterday, while the good news is is that my fistula closed, the bad news is is that the scar tissue is so bad, nothing bigger than an eraser head on a pencil can get through.. on a good day. So I give.. surgery it is.

I’m tired of Crohns running my life. I was okay with having a couple of bad days a month but not being able to eat anything? To end up in the hospital more times in one 4 months than I do in a year? It’s impacting everything, my daughter (sadly, she’s almost used to it, which is almost worse, but she’s very helpful and sweet.), my relationship with Ry, my work, and quality of life. Enough is enough, slice and dice it is.. and bonus, I won’t lose time out of summer. I always hate being in the hospital when it’s warm out.

It’s really easy to get down on yourself when you’re sick. It can really make you feel like a burden on those around you, I know I really rely on a lot of people when I’m stuck in here. Jess really helps out with Noodle, which I’m eternally grateful for, Nood absolutely adores her. Given a chance I think she could spend forever there haha. I rely on my online friends to talk me out of the inevitable funk I fall into in the hospital. I rely on Ryan for pretty much everything else. Then of course my co-workers suffer. I feel like people will start to resent me but I’m thankful for the support net I have, however small. I don’t know what I’d do with out everyone.

Hopefully this surgery will really improve life, both my gi and surgeon think so. It should be just a basic bowel resection, and I’m meeting with my surgeon tomorrow to nail down whether it’s going to be next week or the week after. I’m going on steroids for a couple of days for sure, but we need to meet and talk about the pros and cons to waiting for steroids to work a bit or just jumping into it.

I’m just looking forward to getting some kind of normalcy back in my life. Wish me luck.

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Welcome to Puke-Fest 2015

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Yes yes, as the previous post stated, my butt is back in the hospital for yet another obstruction with my Crohns Disease.  2nd one this year and it’s only March, so obviously something isn’t right with my body right now.  I actually saw this one coming, so I had a bit of time to prepare and plan, unlike the one in January. That one I had absolutely no clue what was going on, I actually thought I had food poisoning, when usually I can tell you exactly where the catscan will find inflammation.  Oh well.

Anyway, Monday night, I felt pretty bloated and had some major cramping.  I knew right away to lay off the food and wait for the nausea.  I’m not one to get nauseous easily (unless I just got an Entyvio infusion apparently), so nausea is usually my “Get-Your-Ass-To-The-Hospital” sign for obstructions.  Tuesday morning I was super nauseated and looked like I was 6 months pregnant instead of my normal 4, shut up, I like cupcakes.  I forced myself to take a shower, as I know I wouldn’t be able to take one for a bit and it was blantantly obvious I was headed to the ER.  I took the monkey to school, called my doctor and went into work to help out while I waited for a call back.  My work is the halfway point to my hospital of choice, plus I felt bad that I was leaving them with a mess to clean up.

After a while of no calls from my doctor, I decided fuck it.  I felt like hell, I had given them the heads up they always ask for, I was going to just head in.  I was nauseated still, but didn’t feel too out of sorts that I couldn’t drive so off I went.  I literally made it 5 minutes away and BAM!  Puking.  I pulled off onto a side street and spewed everywhere.  After a few minutes of people driving by and gawking I realized the puking wasn’t going to let up and I had to call 911.  (Also, don’t pull over to puke in million-dollar-house-neighborhoods – they get offended…) I had a hard time telling dispatch where I was and out of the 6 or 7 cars I waived down, only one stopped to help.  Once I had the address to them, the lady stayed and waited with me until the ambulance got there.  After almost puking on a firefighter, I was packed away with 3 of the nicest EMTs I have ever encountered and off to the ER.

On the way there they couldn’t start an IV, so Zofran (an anti-nausea drug) wasn’t an option, so I did my best, and one of them talked me through the heaves.  To be completely honest though, I started to get scared.  My blood pressure severely dropped (which considering my normal is 90+/50..) and I couldn’t hold myself up or stop shaking.  Once my vision blurred, I about lost it and told everyone I was scared.  Once I got to the ER, the nurses failed at an IV and I had to wait for the IV team to show up (they blew 3 more non-existent veins) and the nurses stayed by my side because I was still scared.

Let me tell you something, in the 8 years I’ve been sick, 7 years diagnosed, I have never been that scared.  I’ve had pretty much everything go wrong with me, but having my blood pressure drop like that and losing control of my body did it.  I know my way around obstructions, and this one was not normal.  The EMTs even stayed until I was stable (which oh my god, how nice, I’m so buying them sandwiches and dropping them at the station next week).

I guess from what I understand one portion of my intestine in front of the blockage was so dilated that basically my body started to panic.  I know that’s not the medical term for it, but I was pretty much high-as-a-kite when they tried to explain it to me.  All I know is that I was scared, and I do not like being scared.

So all in all, beyond the thing on the way here, it’s been a pretty run of the mill obstruction.  I guess the stricture that keeps causing them is getting really really bad, to where at this point, modifying my diet isn’t really helping much, and it’s not really a question of if I need surgery, but when (hey naysayers, I’m glad I held out this long… the fistula is healed as of now, so no bladder surgery for me you asshats).

After talking with both of my remaining GIs (one of whom I love), and my surgeon, it’s basically been agreed upon that I’m going to see if I can make it through another few infusions (Entyvio takes approximately 10 weeks to work ~ 50% rate of remission) to give the drug a chance to actually get what little inflammation I have left to get the hell out.  Then we’ll schedule the resection.  The surgeon and I also agreed if I get too uncomfortable at home, or end up back here, that surgery will happen (I about demanded it during puke fest) and I let him know I will not leave until the stricture has been snipped out.

Now I’m not one for surgery, especially for things that have the option of healing on their own (ie: the fistula – which again naysayers, even the surgeons agreed with me on that one).  However, this stricture (narrowing of the bowel – ie: scar tissue) is getting so bad, the hole so small that almost nothing can get through.  Which limits my diet severely (mainly to overly processed crap that I HATE eating, and I’m not allowed anything from my garden, which makes me want to cry to just think of it) and severely impacts my quality of life.  I’m basically getting tired of not only being sick all the time, but now losing things that I enjoy (like my garden).  So it’s time I suppose, now it’s just up to my body to see if we can put it off and pre-plan it for during the summer when Ashley doesn’t have school, or if it’ll be immediate with another ER trip.  I don’t know.

All I know, is that I’m tired of this, and I want to get better.  If I’m going to suffer through the side effects of Entyvio (which STILL SUCK btw), I want the rest of my non-infusion time, to be enjoyable… not stuck in a hospital bed.

Le Sigh.  As for now?  I just ate my first solid meal, if I can not puke, and there’s no more pain, I can go heal at home, so I’m crossing my fingers.  I miss my kiddo (although apparently I’m chopped liver since she’s had sleepovers at her favorite teachers house) and my pets.  I want my own bed, my cuddles from my family and a full nights sleep without being woken up for vitals.

Well hello innards, can we stop trying to kill me today?

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Holy hell, yesterday was very hectic.  Work was okay, it’s the slow season so the office seems to calm down quite a bit.  I went out to eat with my two bosses, there’s a Mexican restaurant right down the street from us that has some fabulous food. After that, the afternoon went by kind of quickly.

A couple hours before it was time to clock out and head home, my stomach started cramping.  Honestly, I brushed it off.  The pain wasn’t horrible,and my Crohns Disease has been making itself known lately.

Either way, I skipped dinner at home purely because I wasn’t hungry.  I went to bed early, only to wake up an hour later severely nauseated.  It reminded me of being pregnant, the thought crossed my mind that maybe I had food poisoning from lunch… The mental image of my lunch plate sent me running to the bathroom. 

The vomiting didn’t stop and I was pretty convinced it was food poisoning so we all piled in the car to go to my ER.  Forwarding though all the hospitals make Sarah grumpy thing, I have another obstruction. An NG tube and some morphine later, I’m feeling a bit better.

Ryan and Noodle had left for a bit, but they came back for a little while before Noodle goes with one of her teachers for sleepovers. 

My kid’s a tough cookie, while that makes me happy, it still makes me a tiny teensy bit down. Sure she misses me if I get sick… But she also knows she gets to have sleepovers and be spoiled, which doesn’t happen much at our home.

So while she bounces out to have a great time, I miss her.  Ahh well, we’ll do something together in a couple of days when I’m back on my feet.

Tomorrow I get to sit down with my doctor and literally argue with him over what medications I will *not* be on. Hopefully that goes better than expected and I can go back to grumping about early morning blood draws. Either way I’m beat. Time to try and get some sleep.

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!

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.  :)

 

If it ain’t broke, don’t fix it, surgically remove it.

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Crohn’s is a dirty, dirty, low-blow throwing bitch.  Even worse, my mind is my own worst enemy sometimes when it comes to my treatment.  I have such a hard time accepting the different stages of treatment.  Hell, just page back through the entries, you’ll see the mental dilemmas I went through when I was considering going onto Humira.  (Like that even worked, totally lame!)

Now look at me!  I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone.  Add in dozens of antibiotics, muscle relaxers, corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List?  Surgery.  I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious sabotages me again).   Like I said, I’m still on Prednisone, I’m on my last week of tiering off.  So only a couple of weeks of hell left.  My current mental problem?  Now that I’m starting to feel normal again (starting being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery.  When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed.  I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own.  Obviously.  I am coming to terms with the fact that I NEED surgery.  That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission.  I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.