Monday, August 2, 2010

I don't have the strength to be clever or anything more than an information dispenser. I've hit my emotional limit for the time being, lots and lots of tears have ensued and a frenzied freak out to boot.

My ultrasound showed that I probably have a piece of my small bowel that is telescoping itself (exactly how it sounds, folding in and out like a telescope.) If you look this up you will find a few things, one it's very rare in adults and the treatment for it is debatable from dr to dr.

Also, if you look this up you may find some rather disturbing information on it's seriousness. Thus the freak out.

I also have some lymph nodes in my abdomen/right hip area that are inflamed. Which to me signifies that yes I do have infection in there still.

So what happens next, well after freaking out on the phone I got an appt tomorrow morning at 8 a.m. I will have a small bowel follow through test (basically a series of Xrays following barium through my system) to determine the extent and exact location of this telescope.

I'm told that if my symptoms become more intense (like a full bowel obstruction) vomiting, abdominal distention, worse pain to call right away. I again have a very warped sense of these things and I also don't vomit as I've mentioned before. I've had a number of bowel obstructions and only thrown up 2-3 times during all those times.

Right now the infection seems to be on the back burner because my blood work came back fine and I have no fever and they aren't quite sure what an infectious disease dr will do for me, even though we all know that doesn't matter in my case. I have been basically a-symptomatic in those ways in terms of infection forever.

I'm freaked, I'm pissed, I'm overwhelmed and to tell you the truth beside myself.

My GI assures me that they are taking care of me, I believe her when she says that. What I'm struggling with is as great of a doctor as she is and British Surgeon Dude, etc is what's going on with me beyond their scope. After tomorrow, I'm going to push to go anywhere in this country that is the BEST and figure out how to get there.

The best we can do is trust that in some way after the test tomorrow we will figure out the plan to fix this before it gets scarier (look it up, it can get much scarier.) I decided this afternoon I will NOT check-in to either of the local hospitals because the a** hole who performed my first surgery and botched my sphincter is the head colo-rectal surgeon at both.

Thankfully we live within 45 minutes of some of the top infectious disease hospitals and some other pretty great colo-rectal surgeons and we'll just go to one of those and demand they let me in.

I know you all have a lot of questions, please trust that when I say we do too, but that we only know what I'm telling you here. We've asked all the what ifs and have a lot unanswered questions ourselves.

My poor sweet husband and mother are also both beside themselves (along with all of our friends and family.) The hubs is angry and angry is not one of his regular emotions. He needs time to be quiet, otherwise he might explode. My mom is worried sick and feeling helpless and anguished like I'm sure only a mother can.

I've said it before and I'll say it again, hopefully tomorrow will yield real answers and real solutions.

1 comment:

duck said...

not the news that any of us were hoping for, and I'm glad that you're taking charge of the situation, it's important to know the hospitals not to go to as well as the ones that may help. I really hope a solid plan can be made for you to start to get a little relief.