Monday, August 15, 2011

New Surgeon/Specialist to the Rescue???

Helloo all.
I have been planning my wedding and dealing with this heath shit and all's seemed a little too crazy around here. We got our marriage licence and officiated it at the courthouse with our parents present.
but we're having the ceremony, like, a big party for friends and family--all that are still here in the united states anyway--in September. That gives me a couple of weeks, but with all the shit that we are doing ourselves for it (budget, you know. Fuck this economy) it has consumed most of our free moments.
I am writing to you all dressed up in my going-to-appointments outfit.
One of my many.
 Anyway, my surgeon, Dr asshole, was like "I give up" in a very rude and horribly offending way to my mother and myself, and my husband, and so we switched over to a pelvic floor disorder specialist. he was the one who helped convinced Dr asshole to give me the ileo in the first place, bless him for that, but he and Dr asshole are butt-buddies, bbf. Butt buddies forever. This is well known in the hospital, and after spending nearly half a year in and out of that place, I have learned to open my ears and eyes to the going ons and relationships there.
well anyway, so we (mom and i) are hoping to convince this specialist that I need to get my large intestine out. omg it has given me so much trouble i don't even want to go into the mother fucking gory details--but it is ruining my life, just like before ileo surgery. Ugh. Dr asshole promised me would do the total colectomy after ileo, then when we asked him about it, he said "I never said that" my mom showed him the notes she took, (not to mention the tape recorder) and then he quickly switched his lie over to "yeah, well... I've changed my mind."
So how much hope do I have to convince specialist to do this surgery? Slim to none. I know if I continue on the way I am now, my husband predicts I will live another 3-4 years, maybe less considering my diet is so poor since my small intestine transit is so incredibly strangely eerily slow (we think there's a kink in it from surgery since b4 when I was tested it was fast.)
I have been tested at Mayo, and everyone there commented on how I have an unusually high tolerance to pain. (and to alcohol, ahem, but they don't know that :)
so when I'm in pain, there is something COMPLETELY FUCKING WRONG.
and this pain of my gi tract? it sucketh mucho. I still eat watery soups w/olive oil for much needed calories, and scrambled egg in the morning, and whipped mashed potatoes. that is all my body can handle. even a few mouthfulls of very soft and well chewed foods take nearly 19 hours give or take to come back out again into my bag. NOT NORMAL. not fucking normal at all.
but despite this, Dr asshole was all like "eh, whatevs." uhm, no. if you were doing someones roof and you just walked away, leaving nails and boards and shit everywhere, that is irresponsible. They would fire you and shoot you as you deserve to be handled, mister butt-face!!!


Awesome. But still scary. So this specialist was in agreements and my new surgery is in like 2 months!!!  :O Next month is my wedding celebration, the party for our family and friends now that we made it courthouse and legally official. Sooooo.... for this case, I am glad, but also with all the heckticness of what is going on right now with planning and all the stress that involves, this is not a good time to learn about another really hard really scary life altering surgery coming up :( Do not like to be thinking about this at this time :( :(


  1. Hey there honey. Really putting it out there for you that this upcoming op brings you the much needed and wished for relief that you are so deserving of.

    Hang in there Babe.

  2. P.S: By the way, a very BIG congratulations to you on your marriage to your exceptionally wonderful man. Have an awesome time celebrating with your all your loved ones next month.

    (Had my second op mid June '11 for Crohn's disease which hadn't responded to meds. Result: Extensive bowel resection resulting in high output temp ileo stoma and have therefore been placed on TPN via Hickman neckline 3 times per week 'til my stoma - Cherry Bum - can be reversed. Certainly not the post op outcome that I had elected surgery for! But hey, one day at a time...)

  3. Pythonette--thank you! But oh, my heart just sinks for you!!!! I was about to be placed on TPN too--I was wary about it, but I was pretty desperate and certainly NOT getting all the nutrition i needed.
    I wish I could give you some of my slow transit output, and we could trade just a bit to find a happy medium with the both of us. Wishes... But YOU hang in there too!! Crohns is just an asshole!!
    Take care... and you take care too, Cherry Bum <3

  4. Thanks ever so much for your well wishes too! And haha, yeah! Thats such a brilliant idea about giving each other some of our hugely differing bowel transit speeds to help equalize each other out. Not a bad idea at all. Lets do it! ;)
    Am so glad you didn't get placed on TPN honey. The ileo stoma bag is one thing, but with the Hickman line for TPN as well I feel somewhat more cyborg than human these days. Having said that the TPN makes you feel awesome as of course they tailor it to give you everything that you need and, as a fellow 'roomie' when we were in hospital (Freo Hospital, Western Australia) said, its really excellent for our skin (ahhh! hydration) - like having plastic surgery without the knife! Take care now gorgeous...

  5. Aw, thank you! I pray that you will start to feel much better with this coming year. Sending warmth and well-wishes your way ! <3