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.

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Tacos Are Now On The Naughty List

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Wednesday started out innocent enough.  I dragged my lazy butt to work, worked the morning away, and then went out to a great Mexican joint down the street with two of my managers.  I’ve been there a few times, and every dish I had was fantastic.  I went low key, tacos (real tacos) with beans and rice.  All foods I’ve never had a problem with, and let me tell you, they were delicious.

Back to work I went, and in a couple of hours, my stomach started bothering me.  With having Crohns Disease, that’s not completely out of the norm, but I hadn’t eaten anything I couldn’t tolerate.  Whatever.

Once I got home, I decided to skip right over dinner and go lay down.  I was feeling pretty nauseated, but again, that’s not out of the norm lately.  I figured I’d go sleep it off.  Well, I slept… for an hour.  That oh-my-god-I-have-3-seconds-until-I-hurl feeling woke me up and I stumbled straight for the toilet.

I have never puked that hard in my entire life.  Not even that one night in my early twenties where I didn’t have to pay for patron shots and consumed enough to cost one of my paychecks if I did.  Never.  Puked.  That.  Hard.  The only time I had thrown up that hard was back in my teen years when I got myself a good ole case of food poisoning from an under-cooked burger.  Remembering how long that lasted, and the relief I got in the ER, I figured oh well.  I had the boyfriend call my GI (with Crohns, you can never be too careful, I figured worst case scenario, he couldn’t say I didn’t tell him I went to the ER) and then promptly drive my puking self all the way to the hospital.  I spent the ride in the backseat going “oh my god, where are we??!  Why are we not there yet?!!?”

The ER I frequent is staffed with some very wonderful doctors and some sweet nurses.  They’ve never questioned me when I have shown up… for any reason.  I’m pretty knowledgeable about my body and have a pretty extensive chart.  So I explain that I think I have food poisoning, and yes, I have Crohns.  Mr. ER doc doses me up with some Zofran so I can stop puking, and orders an x-ray to be safe.  I curl up in my ER bed watching the kid and boyfriend play Minecraft on the tablet.  Half an hour later the doc comes back.

“The X-ray showed a loop of intestine that may be blocked, I hate to do this, but I want you to have a catscan to make sure you don’t have an obstruction.  Especially with your history.”  I agreed but had to fight off the urge to roll my eyes.  I’ve had so many obstructions, I’ve lost count… this couldn’t possibly be one.  I was absolutely *fine* this morning, no pain, and plus, I usually don’t puke until the later stages… and I couldn’t have crossed my obstruction timeline in a third of the time.  :::Pukes::: More Zofran please!!!  Oh god, I have to drink contrast??!

Insert catscan here, insert horrible joke about glowing with radiation.  Insert nurses prediction on where said contrast was going to end up.

When I got back from the catscan, I sent the boyfriend and kid to sleep out on the couch in the waiting room (way better than the chairs they had in my little hole).  I figured I had food poisoning.  In another hour the Zofran would kick the crap out of whatever pukey little bug I had, and I’d be off to sleep at home.

No sooner than I settled back in my little bed, I had to grab the puke bag.  The nurse called it… all that contrast came right back up.  As I’m sitting there puking, the nurse runs in with the doctor.  Apparently I somehow do have an obstruction, and now they want to put in an NG tube.  I had already maxed out my Zofran, and seeing how I’d rather sit on the toilet for hours, rather than puke, I agreed.

The tube helped, and I was able to get some pain medication and sleep.  (Bonus: I accidentally pulled it out later… and I got to keep it out! Hell to the yeah!)  I stayed in the ER until morning since the hospital was full, but they finally got me a room… which is where I am now.  It’s Friday.

After speaking with the surgeon/a radiologist/my GI, I basically came out with one hodge-podge of a story.  Surgeon and radiologist see a stricture, a bad one at that… with little to no inflammation.  That explains my lack of symptoms… and skipping from cramping straight to puking my brains out.  GI doctor was angry I didn’t want to take one kind of my medication anymore, and we had to have the “quality of life” argument again.

[Something I’ve learned along this journey, is that quality of life is really, really important.  I would much rather have a couple of bad days here and there and *not* take a medication than take a medication that makes me lose my hair, lose my appetite and gives me the worst fatigue I’ve ever felt (and coming from someone who deals with fatigue on a daily basis, that is saying something).  I’d much rather spend time with my family than all my time sleeping.]

So long story short, barring some horrible incident when I’m finally allowed to eat again, I’ll be allowed to go home “sometime this weekend”.  I’m just hoping for before the massive snow storm that’s supposed to hit Saturday night.

I really wish I was home right now, I’m pretty home sick after only a few days.  It has nothing to do with the care I get here, I drive 40 minutes past 4 other hospitals for a reason, I just miss my family and hate being reminded that I am indeed mortal.  I know that my little one is having a sleep over with one of her favorite people ever tonight (thanks Jess!) and is having a blast… but I still miss her.  After losing so much time being sick, I hate losing any time at all.

I’ll be finally switching to the new medication I’ve been rambling about (the name escapes me at the moment) and I did agree to go on the shall-not-be-named medication I hate, but at a low low LOW dose (I was on such a high dose last time, it was beyond what “high dose” is considered normal- hence the horrible symptoms.)  I’ll also be stuck weaning off of the prednisone again too.. because yup… during a morphine nap, a good ole bag of prednisone got hooked up to my IV.  Sneaky Sneaky.  Maybe they’ve caught on that I’ll try to refuse if I’m awake.  To think, I *just* got rid of the moon face too.  That’s a whole different blog though… one I don’t feel like mentally visiting right this second.

All I know is that I really, truly hate NG tubes, seeping IVs (my hand doubled in size overnight) and now apparently tacos.  Oh tacos.. you will be missed.

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.