To Cleveland...and Beyond....

So I thought I'd do a quick update post regarding what's going on with me medically - for those who care - or are just interested in this stuff in general. Also - this is a more boring post - no pictures...but given the subject manner - you're welcome!

A couple of weeks ago - my mom flew out here to the Philadelphia area - and we drove out to Cleveland.  Our mission: schedule a surgery.

We drove out on a Sunday - it took about 7ish hours.  We checked into the hotel - and pretty much crashed.

Monday - we met with the GI doctor.  My first impression was not great.  That being said - I could have done a better job of being prepared - with records and whatnot.  At first, this doctor was pretty sure she could fix me without having to see a surgeon.  My mom and I pretty much said - both of my GI doctors (the one in Philly and the one in Asheville), who are both highly regarded, both agreed that I am immune to medicinal therapies and needed surgery.  Unfortantely you can't just schedule and appointment at the Cleveland Clinic with a surgeon - you have to go through a doctor first. That being said - the doctor wanted to send me for some blood work and an MR Enterography.

We left that day - I had given the blood they wanted and left with an appointment for Tuesday for the MRE, as well as an appointment that Thursday with a surgeon.  But not just any surgeon - MY surgeon.  The wonderful woman who performed and exploratory surgery back in 2010 which led to my diagnosis of Crohn's disease.

Tuesday - I went in for the MRE while my mother saved me $350 on an antibiotic I needed to take for C-Diff.  I'm not going to give you a link, or tell you what it is, but it's no good, and I tested positive for it.

Wednesday was our day off.  We spent it lounging around the hotel room and then had an adventure in the Rock and Roll Hall of Fame.  It was pretty awesome there, not quite as large and encompassing as I had imagined, but the price of admission was well worth it. (Plus I got to use my original Temple ID from about 11 years ago!)

Thursday - the day of truth.  As we left the hotel room, my mom mentioned how nervous she was.  I wasn't nervous - until she said that!!!!  We drove over to the clinic - and waited patiently to see my surgeon.

Since the CC is a teaching hospital - you usually have to deal with more than one round of doctors. The first doctor that came in (after the nurses did their BP, Temp etc...) and started asking me what I was there for.  I gave him a brief history. At that point - he mentions that he doesn't think that surgery is an option with me since so much of my small intestine was removed in the last surgery.  He then tells us that three feet were taken out - this SHOCKED my mom and I.  I was pretty sure that they had only taken about a foot - but this guy says that I only have 250cm left, and you need 100cm to live. Short gut syndrome started popping up with big flashing signs in my head - then I realized that surgery was not an option.  I was internally freaking out!! Then of course I started crying out of worry and frustration.  (Little did I know my mom was doing the same thing!).

After he does his first little interview, Dr. Costedio (my surgeon) comes in.  Basically she said she wants to do surgery, I have plenty of bowel left, and she can't make any promises - but she can try to remove all of the currently active Crohn's and basically "open" me up on the insides. HUGE sigh of relief.  We of course talked about possible complications (I.E. colostomy bag, it's the new fashion you know!) about my continued use of pain meds. And the after care plans. Also, in order to prepare for surgery - I have to not be on some of my meds anymore - basically the meds I take for the Crohn's  - Remicade and Prednisone.  These make your tissues weaker - so I need to be off of them in order for the surgery to be less complicated (see colostomy bag).  They also informed me that the hospital stay is at least 5-7 days - but my last one after surgery was 10 so I'm mentally preparing myself (and getting movies on the iPad) for a longer stay.

We left that day with a plan - and a surgery date!  Pre-Op July 10th. Surgery July 14th. Mission accomplished.

Of course I'm nervous about surgery - because you never know.  But I'm excited that I may be better afterwards.  The doc even said I can try introducing fruits and vegetables 4-6 weeks after surgery!!! Caesar salad - here I come!!!

No matter what the outcome of the surgery - I'm going to get my life back.  If this doesn't "fix" me, I'm going to have to figure out how to live my life and be a human again.  If that means figuring out how to live every single day in pain - then I'll figure it out. But the fact that there is hope of remission (at least for now) is something I haven't had in a long long time. 

I can't thank my family and friends enough for the support over the past five years.  This road has sucked, and frustrated me beyond belief - but you have all understood and never made me feel bad or guilty for bailing on stuff because I'm sick, or needing help.  So Thank You!!

On another side blog note - I've started like 8 other posts about movies and books and just haven't actually had a chance to sit down and finish them.  I'm going to try to get a bunch done before surgery - but after I'm back home - I'm going to be fairly sedentary for a few weeks - I'm sure I'll be able to move from the bed to the desk (I can handle 18 inches - which is not what she said). ;)