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A cut beyond - Musings of Unayok

2008 Sep 07

21:52A cut beyond 

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I've been mulling this over a couple of weeks, trying to figure out how to talk about it without sounding defeatist, whiney, alarmist, angry or some other not-entirely-useful emotion.

I had an Upper GI with Small Bowel Follow Through early in August. I had this done because I'd been experiencing "epigastric discomfort" (meaning the upper digestive system). The follow-through was added to take advantage of the opportunity to check up on my Crohn's.

Two weeks ago I went back in to hear the initial results from the GP that ordered it (and with an appointment with my GI specialist about a week from now).

I was a bit surprised (to use a moderate understatement) to hear virtually nothing about the epigastric component, but instead to hear the words "surgical opinion" used several times in reference to my Crohn's.

Now, my Crohn's has been more or less stable for many many months. Variable up and down somewhat, and I'm not symptom free by any stretch of the imagination, but it was all manageable, and the GI specialist had been content to keep me on what is essentially low end remission maintenance therapy.

My Crohn's shows some signs that it is a bit more advanced than most on remission (I have a fistula from the terminal ileum to the colon) but it has been this way for years and it has not gotten significantly worse in that time. My weight is stable -- in fact I am gaining upper body definition and feel (from a physical strength/conditioning standpoint) the best I have in years. My bloodwork is normal (a little low in iron, but this is managed with a small supplement). The only "problems" have been a low-level TATT (tired all the time, which several tests have not isolated a physical cause for) and the recent epigastric problem.

Thus, the sudden and dramatic shift from that to serious evaluation of bowel resection... well, let's say it was a bit of a shock. And not something I'm going to take lightly. This is "only" my GP, of course. There are several different therapeutic paths I think we need to try before I'm going to accept cutting on my guts meekly.

As a result of this, the last couple of weeks have been somewhat uneven for me emotionally. The surgery itself isn't so complicated or bad. A week in the hospital, another 4-6 before I'd go back into the office (fortunately, covered by disability from work). The main problem with surgery, from most (but not all) of the ones I've know who've had it, is that it doesn't stop at just one operation, and the prospect of the bag (ileostomy/colostomy) looms ever on the horizon. I'm definitely not going down the surgery path lightly.

At the same time, I'm still a little perturbed at my GI specialist; at our last appointment (in April), the file at the office I met him at (he has two) did not contain the results from my CT scan in May 2007. I'm going to be calling his office this week to remind them to make sure that the results are there this time (I know the results from the UGI/SBFT are there as I saw the GP put them back into the file).

Additionally, one of the nice things is that patients here are allowed to requests copies of their own data from such tests. I have a CD with teh test results from both of my recent tests. I am toying with the idea of making an extra copy in case he happened to forget them again. Though, as I understand it, such a copy might be of questionable legality...

Where is this going? Not sure. I do know I'm going to have my research together for my GI specialist meeting, and suggest a three phase approach to avoiding surgery (the last phase is a very expensive medication still covered by my drug plan, but rather nasty stuff besides). Assuming negative response, this would delay surgery at least 6 months; past Gallifrey 2009.

Heh, this ended up a bit more nicely-written than it started out. I've spent a lot of the free time thinking about a few things, straightening out a few kinks in my mind, and considering options. I haven't been that fun to be around during this time, I think. Sullen and introspective (okay, more than usual). This will probably continue until I have the talk with the specialist... But then, in the same week, I get the next round of new ink, which is something to look forward to very much indeed.

And I've already decided that if I do need surgery, I'm going to console myself during my recuperation with a new notebook to replace the 2003 one I'm still using. Apart from RAM (512MB) and the video card (GeForce440Go), it's a wonderful notebook on par with many today. But the latter deficiency is a bit of a killer these days. Oddly, it's an expense I'd prefer not to incur, but we'll see.

I'm a couple weeks behind because of this, but I do have a few other entries I need to make in the next few days.

Comments:

From:sfmarty
Date:2008 Sep 08 - 03:47 (UTC)
I just finished reading my latest issue of AARP magazine. It had a very interesting article about the frequent misdiagnoses because doctors seem to be relying on obvious symptoms and ignoring (perhaps) other causes (or multiple causes) of medical problems. It worries me that you might be being rushed into a surgery that perhaps you don't really need. Judging from the tenor of your post, this concerns you too.

There are articles from time to time about medicines and or procedures that can aleviate Crones. I havn't paid too much attention.

Can you get another opinion?
[User Picture]
From:unayok
Date:2008 Sep 10 - 02:21 (UTC)
Given how the referral process works here that would take rather a long time, I think. But, see my later entry. It helped me make some sense of what's going on. Finally.

unay