Wednesday, May 6, 2009

Warning- This posting rated PG13 for graphic content

Here's a fun little exercise for you. Have someone you trust help you lay down on the couch and they have to do all the support and work for you. You can't even twitch a baby toe nail to help them do it otherwise it will send you into shock waves of pain you won't recover from for hours. Betcha can't do it without tensing up muscles.

I'm home from surgery - in the hospital 6 days total. First day - let's call it primal scream therapy. I woke up from anesthetic violently - who doesn't when they have a giant breathing tube shoved down their throat and then some dimwit nurse in recovery screams in your ear cause you're still out of it they can't take the tube out until your strong enough to lift you chin to your chest after surgery. Try that one without using your abdominals. I managed to get a death grip on a nurse to my right and made enough of a commotion my anesthesiologist actually came out of the surgical room and told them not to be dimwitted, I had just had major surgery and it's not that I couldn't lift my head it was that it hurt too much and to take the tube out since obviously I was strong enough to cause pain to faceless nurse to the right.

The rest of the day brought forth screams of pain that I cannot find it possible to describe to you. I had an epidural for pain control and morphine being pumped constantly - I'd hate to know what it was like without that. I wasn't screaming words, it was deep down bottom of your soul pain screams...Paul says he never wants to hear that again, he had to hear it when they moved me from my recovery stretcher to my hospital bed. A really great nurse came out and sat with him until I had stopped sounding like a prisoner at a torture camp and explained they were going to work fast to get my pain under control. Something that didn't happen until much later that night. I laid there in a state where all I could do was control my breathing and not even speak. I had a giant nose tube that went into my stomach for drainage and even moving a finger hurt.

Thursday was much better for about 10 minutes until the fire alarm and the patients were evacuated. Almost the whole  hospital was evacuated and you would hope they would just move the beds but no - just as my nurse came in and called for help to put me in a wheel chair and I had tears running down my face they called an all clear. Right then Paul rushed into the room. He had shown up and saw fire trucks everywhere and the whole first floor of the hospital by the doors were stretchers and wheel chairs and emergency workers. He was panicked and so relieved to find me in my room. My nurse, myself and Paul all took a good hour after that of doing nothing and just calming down. A giant circulation fan in the hospital had a bearing go out in it and it filled the whole place up with smoke. The fire alarm went off again on Monday too but no evacuation order that day.

From there it was pretty much all up hill for me. Thank goodness. Got some great visitors, gorgeous flowers and cards and thoughtful gifts. So here is the update.

I was supposed to have the surgery laproscopically - and this is what my scars would have looked like if that had been possible:


That would not have been so bad I don't think, but unfortunately I was not able to enjoy this benefit of modern surgery. This is what my scar looks like today:



This is 42 staples in as neat a row as you can get that run right down my whole front and it takes up about 8 inches. I get the staples taken out on Tuesday at my family doctor. I think the scar should end up looking quite good. I'm going to make sure I put Vitamin E oil on it so it stays soft.
As you can probably guess, my recovery time will be much more significant.

Oh yeah, and this is what the backs of my arms look like today - while in the hospital and not able to move they give you shots of blood thinner to prevent clots and they are painful and I bruise easily. You get two shots a day every day. It freaked people out when I rolled over in bed.



And here is the grand finale - the stuff covered in pink is now what I no longer have!


Basically what happened - and keep in mind my surgeon is VERY conservative about what he takes out because Crohn's patients usually require more surgery - my large intestine was so inflamed and distended it had to mostly be removed, my appendix is gone, they had to remove part of my small intestine that was also very ill and because of everything wrong with my large intestine it had actually caused a twist in my small intestine they had to fix (they straightened it and didn't have to remove it but I could have died from that part if it hadn't been found and fixed) and they had to fix a fistula that no scan ever picked up and last but not least - after all this major surgery my stomach had actually fused to my large intestine and a small piece of it had to be removed as well. So on top of everything else I basically had gastric bypass. Awesome.
Amazing what you can do without hey? Paul says the operating room must have had parts flying around it with doctors saying things like 'don't need that, throw that out there, nope don't need that and let's just say we won't need that either.'

I now have an ileostomy - a small portion on my small intestine is actually attached to the outside of my right stomach and this is where my waste actually deposits into a bag. I will be talking more about it and posting pictures later - it's still something I'm dealing with emotionally and spiritually and physically and I'm just not ready to go there yet. For those of you who are curious - my bum hole is sewn up on the inside - I no longer feel the urge to go number two it just happens and I go pee just like a regular person, although right now it's a bit painful cause I had a catheter in for five days and my bladder is like the rest of me - it liked being lazy and now that I'm forcing it into action it complains a bit.

I'm drinking lots of white cranberry juice slowly, eating 6 meals a day and I have to be careful what I incorporate into my diet for the next six to eight weeks. I have home care nurses and dietitians scheduled to come visit me for the next couple of weeks to help me and Paul and make sure we're okay and it's a learning process.

I don't know what I would have done without Paul - for those of you who have someone really close to you who will be in the hospital, the absolute best thing possible you can do is to show up with really soft wash cloths -we're talking like the kind babies get and give that person their sponge bath when they can't get out of bed. The nurses don't have a lot of time, you end up trying to maneuver and clean parts yourself and the towels and cloths at the hospitals are horribly rough and scratchy. You feel more abused than clean at the end of it. A nurse only gave me one bath, after that Paul did everything and I can't tell you how great it was for me. The nurses even enjoyed that they had time to look after other things and they showed him where everything was and left a basin and soap in my room so he could wash my back and legs whenever I felt like it.

On a final note - coughing, sneezing and laughing, all things that require major abdominal usage and all stuff that sucks right now. Anyway, I've been sitting at the computer for a while now, I'm going to do a couple of laps in the kitchen and then sit down and put my feet up. Thanks to everyone for your well wishes and thoughts, please keep phone calls to a minimum this week if possible. We have odd sleeping hours right now and although I'd love to talk to all of you this moment I don't have it in me.



2 comments:

  1. Hey Joseline! I've been checking your blog everyday waiting for an update; thanks for being so on the ball!! Glad you are home and starting the recovery process.
    I feel so bad that you had/have to go through so much pain and that Paul has to watch you go through it. I'm so happy he's there for you though! What a great husband. I hope things continue to go up from here.
    Ashlea

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  2. Oh, dear Joseline! I cannot fathom the misery you experienced over the past few days. I remember how much pain I was in after having my appendix removed (and 8 weeks pregnant). I was screaming at the recovery nurse for more drugs and she kept telling me she couldn't give me more because of the baby. Well, Nolan turned out just fine. But I cannot imagine how I would feel after having half my guts removed. We continue to think of you and pray for you. If you or Paul need someone to vent to, please remember that we are here for you.
    Love,
    Rhonda, Ron, Nolan and Ty

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