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.

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4 thoughts on “Crohns Disease: in the hospital you go!

  1. sonia

    Hey sara…we love and support u…gonna pray like mad for ya…watever choice u make i kno there are lifestye choices that can be made to keep it from recurring again…my cousin had been diagnosed with crohns disease but doesnt deal with any symptoms and hasnt for probably over 10 years….he’s older and i dont kno much about it, but thats all i do kno….love u and support u in prayers or research and watever u need. Big kisses :))

  2. Amanda Winski

    Hey girl, I know its a tough decision, but if you have scar tissue, surgery is really the only way to fix it. I dealt with obstructions/hospitalizations on a monthly basis for almost a year before I decided to do it (I experienced the whole no sleep/fetal position/crying/screaming into my pillow every single time), but I’m SO glad that I did. That kind of thing will only get worse. Don’t wait until it’s impossible to go without it any longer, you’ll be FAR more miserable than you are right now. And at least the bf is there to help out. So sorry you have to go through this :(

  3. Amanda, I know. I’ve talked to the Urologist as well as the general surgeon, and my gi doctor. All of them think I should do it. I’m honestly considering it. I’m tired of the pain and I’m tired of ending up here. It’d be nice to live a semi-normal life, if even for a little while.

    Thanks for commenting hon. <3

  4. JenN-Moo

    I have no experience with Crohn’s, but having had kidney stones and gall stones and eventually having my gall bladder out, I really REALLY wish I’d had the surgery WAAAAAAAY before I did, ended up with emergency surgery because my gall bladder was so inflamed it had also inflamed my pancreas and caused pancreatitis. Not fun. Luckily I had a husband and a mother than could come take care of my boys. Do what you need to do to get well, but I get having to do what you need to do to LIVE. I <3 you and wish I was closer, I would take Noodle and love on her AND you!

Reply, do it, you know you want to!

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