Monday, March 26, 2012

3 years

So it's been 3 years since my last surgery.  I have not been hospitalized in the past 3 years either.  I think this is a new world record for me.  Do not be under the delusion that that means I've been healthy because that just isn't true.  The longer I go without surgery, the more sick days I get until the day I just know it's time.  I've told my MD that I will call him the day I need to be admitted.  I can't explain it-I just know when it's time. He keeps trying to give me medicine but nothing works for scar tissue!  I have had to increase my pain medicine.  I have been on the same dose for almost 4 years now and it just isn't working for me anymore.  So I guess that's a good thing right?

I think the only reason I have made it this far is because I am all alone.  I am 9 hours away from my family and I have 2 cats and no one here to take care of them should I be admitted.  I think sheer will power is the only thing working for me right now.  But I am not an optimist.  People say you shouldn't think like that.  But since 1989, I have had surgery every 3 years-that's 9 surgeries!  So it's just how it is.  That has nothing to do with optimism or pessimism.  It's just reality.  MY reality.

What happens for me, is that I eat less and less because I'm just not hungry.  I have already lost 2 lbs over the past 6 months and I'm on daily TPN to keep my weight up.  So that tells you something about my intake.  Then my intestines slow down a lot.  To be brutally honest-what comes out of my ileostomy when everything is working is water. When I'm getting close to surgery time, the consistency becomes like thick oatmeal and stuff I eat doesn't come out until the next day.

If I do an upper GI when I'm healthy, it takes 15 minutes from drinking the barium to it coming out into my ostomy.  When I am close to needing surgery, it takes upwards of 2-3 hours.  For me, I get scar tissue and adhesions that wrap around my intestine.  They go in, take all the crap out and I'm good to go for another 3 years or so.  My last surgery March 2009 took all of 45 minutes from start to finish.  Yeah it's that fast-but I still have to have staples and a month's recovery.  I don't have any paid time off so that's a month of no pay. I can't afford that.

This is my reality and it scares me that my 10th surgery is coming-I never thought when I was diagnosed in 1986 that I would be reaching double digits....