things that are scary…

…having a colorectal surgeon tell you she does actually wonder whether it could be Crohn’s, not ulcerative colitis, because of the area of involvement in the lower colon.

It’s more of a ‘we need to be sure before final surgical decisions are made’ type situation, because my case is evidently a bit peculiar. People heading in for colectomies don’t tend to be left-sided folks, like I am – so it’s unusual territory for the surgeon, apparently. The current plan is to take out most of the diseased section, rather than the whole-colon-except-a-rectal-stump as would be the usual course of action for a UC colectomy. Since for me, taking everything but the stump would mean taking a whole heap of currently healthy bowel, and leaving like a third or even half of the diseased bowel behind. Which just doesn’t make sense.

That could be happening as soon as September. Sometime in the next few weeks, I’m going to get and MRI so they can take a peek at my small intestine, get a bit of clarification on the UC/CD situation. It’ll be a blast trying to make that happen in parallel with one of the busiest times of the year at work, but we shall see.

That first surgery would involve about three days recovery at the hospital, and then about a month recovery at home before being in back-to-work mode, apparently. Which is in all likelihood an impossible amount of time to take off, especially given that it’s just the first of at least two, possibly more, surgeries. So I’m going to have a chat to the higher powers at work, and see what we’ll do. And in the meantime, do the necessary investigation into temporary sickness benefits and whatnot, so that I can, you know live.

Sometimes it does just feel like this whole thing is getting far too drawn out, like I’m going to end up spending half my twenties just trying to get stable or moderately healthy in order to go on with life. There are so many things that I should have achieved or done or seen by this stage, and there’s just been no way to make it happen. I’m 23. I’m sick. I’m looking at the prospect of having not one but two stomas over the course of my operations – one colostomy on my left side initially, and later down the line, an ileostomy on my right side, depending on what the consensus is after the first op. And who knows – if stuff goes wrong, either of those could wind up being permanent.

At 23.

That’s scary too.

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