Saturday, June 2, 2012

It came and went

without a post. World IBD Day that is. It was Saturday, May 19. I was gonna post - I really was. But, I got busy with the little people and just never got around to it. I had a great day reading blogs and watching vlogs from IBD activists all over the interwebs. Sara over at A Girl With Guts had tons of videos on her tumblr page and lots of great discussion on her Facebook page.

Here is a picture from my day
My teeny tiny was mad he didn't have a shirt to wear (he took the picture) so I came home and ordered him a "someone I love has Crohn's disease" or something like that shirt. Got one for husband too - will he wear it? We shall see.

Anyway, as the day progressed I thought I'd like to blog something - so I decided to go through my medical records. At least what I have of them. Oy. It was hard. It was hard because of the sheer volume of papers, then it got REALLY hard as I started to read through things once I had them sorted out by duty station. I had documented symptoms (though slight) as far back as April 2002. Things really started to pick up in March/April 2003 until I finally got A diagnosis in August of 2003. The diagnosis originally was ulcerative colitis. Then it was UC and Crohn's. Then Crohn's. Then back to UC. Then UC and Crohn's again. Lastly, Crohn's. Who knows? Does it REALLY matter in the grand scheme of things? Either way you slice it my body hates my GI system and would like it to get out.

Some things that really stood out for me - when I was brought by ambulance to the ER "pt states if we don't keep her she will die". Let me point out I had been through labor by this point so I knew what pain was and if I was thinking I was gonna die the pain had to be unreal because, hello....contractions effing hurt.

Before I was med-evac'd to Keesler AFB it is noted "Pt notes depression as she has had to send her infant son to live with parents in Indiana as she can no longer care for him." Geebus, ya think? I was in a hospital bed a good hour from my "home", my husband was lucky enough to be able to be with me nearly around the clock - but what do we do with Deegan? He wasn't even a year old. Ugh, my heart is breaking remembering it all. But damn, are we lucky to have the support system that we have - grandparents who just jumped right in and basically started all over raising a grandson. It was a relief for me because I knew he was being taken care of and that Raymond could be with me.

Then came the lab reports - good lord the lab reports. SO.MANY.NUMBERS and letters! ***and this is where I stopped writing*** For 2 weeks I couldn't bring myself back to finish this post. It put me in a funk. Well, maybe I was already falling into a funk and this post just pushed me along quicker. Whatever it was - I couldn't come back.

And then I remembered, people may be walking around naked without me LMAO! Seriously, I didn't think that - but I felt like I needed to come back because as much as I write this for the 4 people who read it, I write it for myself. It is cathartic for me.

So, I won't bore you with all the numbers involved in my lab results - just know they were bad. Very very very bad. Like need 4 blood transfusions bad. Blah blah blah, long story short I finally got released and got to come home. I recovered for a week or so and then I flew to Indiana to get my baby back....and so begins my life with Crohn's disease.

Many hospitalizations, procedures and medicines later it became obvious that I was at the end of the line with my colon and it needed to go. So, I moved forward with making arrangements for surgery - I think my surgeon introduced herself at my first appointment and I said "hi, when can you take it out?" I was ready. As a matter of fact, she said if she would have asked 10 surgery candidates if they would like to have surgery the week before Christmas (the next available opening) 10 of them would have said NO. Not me, let's do this thing!

So, I was scheduled and now I have no colon LOL! I wrote up a big NOTE on Facebook about my surgery and I'll repost it here in another blog so you have a somewhat complete story. It's no cakewalk and you may get grossed out. You have been warned.

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