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.