Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient.  I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count.  My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas.  I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult.  Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy.  He seems alright, however it made my day when I managed to make him uncomfortable.  After he described the surgery I said “You know um, hey.  I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my intestines and what not… and if you find him… please bring him back.  I miss him.”  It was like I kicked his puppy.  Or first born child.  Either way after a good 20 second blank stare and a blush, he laughed.  Which means he’s okay in my book.  So far.

So here’s the deal.  Crohns has destroyed at least a 2 ft section of my small intestine.  For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst.  Said section developed a fistula that attached itself to my bladder.  So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder.  Yeah.  I’m 26 years old and I’m having bladder reconstructive surgery.  Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery.  The surgeon wants it before the year ends, and I want it before the holidays.  Nothing like major surgery before Christmas.  So I’m aiming for the beginning of December.  I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time.  Complete remission.  Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery?  Hell no!  It’s something I’ve literally been avoiding for 5 years.  It took major convincing to get me to go on Remicade, even Humira.  Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital.  However, after 5 years of this, I’m tired.  I’m tired of the constant pain, the stomach issues, the 3 year long UTI.  I’m tired of hospitalizations every other month and steroids.  I’m tired of being sick.  Surgery gives me the chance to be healthy, at least for a little while.  So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.

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The things I hate about you… and by you I mean Crohns.

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I feel a bit blah today.  I know why too, and I hate it.  Just like I did last time.  Prednisone.  The oh so wonderful steroid that helps so many of us Crohnies, kicks my ass.  Yes, it helps with the fistula and it helps push my disease closer to remission, but good god do the side effects suck.

I’m not sure what it is about this time, but the side effects have popped up in half the amount of time.  I’ve only been on a heavy dose of steroids for just over a week and I feel like I did three weeks into steroids last time.  My body aches, my joints sting, and my skin hurts, especially around my face and shoulders.  My brain is foggy too, which was a huge complaint of mine last time around.

The point of taking steroids this time is to get my body healthy enough for surgery, which I’m willing to do, but that doesn’t mean I’m not going to complain about it.  I feel hung over, even if I haven’t had a drink in longer than I can remember.  I feel blah.

It definitely doesn’t help that this week was very busy, especially the last half of the week.  We had two girls out, and I have been playing catch up on top of it after missing days for my hospital stay last week.  Combined with the extra hours I picked up to help out and these stupid drugs I’m on, I’m exhausted.

I got a lot done this week.  I feel like I’m caught up at work for the most part, and the house doesn’t look too shabby.  Bills are paid and errands have been run.  This week was hell, just like last week was, but at least it was productive.  This weekend looks much better though.  Ryan is going to be working a short day tomorrow, so that means lounging around the house until he gets off of work and then relaxing for the rest of the weekend, until my drive to clean and organize steps in anyway.

As always though, I’ve been doing a lot of thinking, as I always do when I get sick.  It seems like when you’re down and out with your health, your true support network shows through.  As always, I am reminded how lucky I am to have such wonderful people in my life, and how happy they make me.

I’m lucky to have a job that I love and that accommodates me with my odd health schedule.  I may want to torch the place half the time, and bury my coworkers in the back building, but hey, who doesn’t?  I’m lucky to have coworkers who give a shit about how I feel and my overall health… even people I don’t work closely with every day have shown concern.  From truck drivers to stores, every day someone new pops up and asks how I’m feeling and how I’m doing back at work.

Of course I’m extremely lucky to have my parents.  My dad took Noodle for a couple of nights while I was in the hospital last week and spoiled her.  My sister apparently took her to the zoo, but I wouldn’t know first hand, I heard from my Dad.  I’m glad that I have such a lovely family who looks out for my kiddo and takes care of her so I can rest and heal.  My friends have played a huge role, from my “cafe-mom” friends to Katie and Ingrid (Girls I grew up with).  My neighbors even brought over a meal when I got home and have cut me some slack for my crap-mood.  Yet again, I’m reminded that family is not just blood.  Some times people who aren’t even related to you, step up more than blood does.

I am more than grateful for Ryan too.  When we first got together, I was concerned about how he’d react to my Crohns Disease.  I mean it sucks, some days I hurt too much to eat, or am feeling run down enough to just want to lay in bed.  (Granted, I’m still more active than half the people I know haha).  I worried what he’d think about my having to get Remicade Infusions, or when I’d end up in the hospital again (we actually started dating right after my last obstruction ~ cute note ~ he had offered to bring me a bag of books while I was in the hospital, it’s what peaked my interest to begin with. :)).  I was concerned that he wouldn’t be happy with a girl who was sick, and who will be sick until there is a cure found.

At this point though, I’m extremely glad I met him.  He has been by my side every step of the way.   He comes to damn near every doctor’s appointment, and has only missed one infusion (due to work).  He spoils me when I feel sick, and picks up the slack when I’m down.  When I realized it was time to go to the hospital, he came with, helped me with Noodle (ie: getting my Dad to come get her, packed up her and my stuff, and took care of her for the first 8 hours we were there.)  He listened to me bawl because of the pain, then again because of the heavy drugs (I don’t know, I’m a crier on pain meds).  He listened to the pros and cons brought to us by the surgeons, and he met my doctors.

Most importantly, he sat there and held my hand, only leaving when I made him.  I don’t know what I was so worried about.  Crohns Disease hasn’t made me a worse girlfriend, just like with being a mother, it just made me a little more unique.  Luckily for me, I found a man who loves me for who I am, even if my body is a bit off.  It’s nice to know that I am not going through this alone, that Noodle is not going through this alone.  Not only do we have the support of our family and friends but Ryan.  We’re very lucky.

So worn down I feel today, but all in all I’m not in a horrible mood.  I’m am looking forward to spending time with my kid and the boyfriend this weekend, and just enjoying snuggling in in the morning.  My Crohns may be kicking my ass right now, but that’s not going to stop me from baking cookies with the kid, having a sci-fi marathon with the boyfriend, and enjoying my weekend.  So for now, I’m going to drink this last bit of coffee and wait for dinner to finish.  It smells awesome, and I’m sure since Noodle and Ryan cooked it, I’ll eat every bite.

I hope everyone has a great weekend and enjoys this first couple of days with the Autumn chill and rain.  Happy Friday.

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.