Wednesday, October 27, 2010

Spinning

The building where the magic is happening:)

You know that feeling you get after spinning in circles really fast, the world is moving at warp speed and you are in the center of it trying to grasp solid ground and figure out which way is up -- well that's me right now.

Let's start by saying I'm a little, I mean A LOT, overwhelmed. So this here post (which happens to be the 201 post on this here blog -- I can't believe I didn't realize that my 200th post was this morning!) might be a little discombobulated.

We saw Dr. GI Amazing this afternoon. We loved him. His personality and style was exactly what I connect with -- straightforward, a dash of humor but down to earth and caring too. And you could just tell he knew his stuff and was passionate about it in a weird scientist way, but wasn't a jerk about it.

The first thing he said was that they see people like me all the time --those that have had continued problems with IBD and post pouch surgery, complications that nobody else can seem to navigate. So yeah, I'm not weird here. No confused head tilt here either. And best of all, he didn't make me feel CRAZY or BAD for traveling all the way here. He actually made me feel more comfortable telling stories of other patients from all over the country. It was more of a feeling of you've finally come to the right place.

The next great thing, he talked about k-pouches as if they were common place and he knew all about them. He's the first GI I've seen in the last year who was comfortable with them. Another score.

As for possible answers to the problems, there are a few really good avenues that he is going to pursue. I have an upper endoscopy and pouchoscopy scheduled for Friday morning with Dr. GI Amazing. Hopefully we'll get things narrowed down then and I can share the details then. Too confusing to type out now.

He was happy I was seeing the colo-rectal surgeon tomorrow morning. He explained to us that the GI and surgical team work in tandem. He joked that 50% of the time they don't agree but that's why they work together to get to the root of the problem.

He also explained to us that they have numerous state of the art tools to treat all sorts of GI and pouch problems. The whole time, I think without trying, he reassured me that they think out of the box, have seen lots of people with continuing issues and have developed ways to help that others just don't do or even know about.

Ok so here's where we are:
* Surgical appt tomorrow morning (he may or may not order another CT scan)
* Endoscopy/Pouchoscopy Friday morning (under sedation, yeah!)
* Another consult on Friday afternoon

He also wants me to see an ENT for my chronic cough and repeat my bone density scan when I get home. I'll schedule those up with my PCP when I get home.

We are on to something people, we really are, I hope they pan out to be the answers. But we are really confident in this place. It's amazing, the whole experience has been and it's just started.

Ok, off to sleep again, it's been an exhausting, thought provoking and head spinning kind of day. But all in a good way. So much food for thought and exciting possible answers. We'll see where the next two days bring us. Hang with me, sorry for the vagueness, be back tomorrow:)

2 comments:

Mrs.Newton said...

YAY! Glad to hear it is going so well! Fingers, toes, legs, arms and everything else crossed that they give you the answers you need!
XOXO
J, C, K & P

Queen of said...

My eyes are filled with tears as I read about your experience. I am do happy for you. The relief you must feel is such a blessing. Finally!!

I'm so glad you made the decision to go. I almost just wrote, you've really got guts. ;)

I can't wait to hear more. I apologize if you've received this comment several times, I had trouble posting it but did not want to give up. I want you to know I'm thinking of you.

Yay, Al!!

-Queen of optimism