good evening all.  I haven’t been around much because I mistakenly thought things were better, NOT!  Jeff is back in the hospital for the sixth time this year.  That darn pesky leak he had three years ago has been back.  It turns out the biological plug did not work.  Apparently, it migrated.  Took a long time to find.  But back in May, they went in Rectally thought they were going to shave a piece of it off and found the entire thing intact.  Poor kid has been in so much pain.  So much suffering.  He also had a giant abscess, I forget how large, but it was about the size of a lemon.  They were able to drain it and hoped that would be the end of it.  Well, that didn’t work out well.  Was back in the hospital in June, abscess is still there.  Drained it again, cultured it to make sure we get the best antibiotics for that particular bacteria.  Six days in the hospital and I was in Europe.  I got home before he did.  Anyway, home and is now back in for the same darn thing.  They know where the leak is but no one seems to know what to do to fix it without a huge surgery and another Ostomy.  Well, fast forward, we have an appointment with Dr. Remzi on July 23rd.  We have all had enough.  Now I just have to get all the records over to NYU by Friday.  Thank you to the person who cancelled their appointment because that’s how we got in so fast.  

Obiously, this is a very condenced version of events.  So much has happened over the last two years, I’m losing my mind.  Just when you think things are better, they fall apart, and hard.  My son is so exhausted.  In so much pain.  It’s indescrible.  Sick of taking opioids.  Sick of doctors and painful procedures.  Sick of being in the hospital.  When will it end?

dianne