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Posts Tagged ‘colostomy’

Crabbiness

Sorry for the radio silence. I’ve been both busy and a bit crabby and I write less when I’m crabby. I’m not the sort to spill it all out on the page. In fact, in the journal I have kept since I was 16, you can always tell something bad happened when there are gaps in the entries, but frequently, I don’t even give a hint as to what was upsetting me so much. I know that is backwards to how most people do things, but hey, different strokes and all that.

As I’ve mentioned before, I have a colostomy. It was a side effect of the exploding colon. I do not like it. When I was in rehab, a nice lady from the Ostomy Association came in and gave me a pile of literature about living with an ostomy and a big running theme was, Isn’t this great?! There were little articles written by people who’d lived with ostomies for decades and just thought they were the best things, wouldn’t go back even if they could. Changing the bag is easy once you get the hang of it! It’s all easy, really! Just give it a couple of months and you’ll be happy, happy, happy!

I’m not happy. Changing the bag is shitty, much more so than just wiping your own butt. The bag is held in place by a big bandage, basically, with a hole for the bit of intestine sticking out, which is called the stoma. The bandage is called a flange, and it needs to be changed too. You rip it off and glue another on. Skin does not like this and gets all rashy. (There are many, many ostomy products aimed towards healing this.)

I’ve gotten used to all this and good at dealing with it, but I still don’t like it. Especially since my stoma prolapsed. This means that the stoma, instead of protruding only a little bit, sometimes hangs way, way out. Likes, 6 inches. Remember in Alien, when the little baby alien busts out of the guy’s belly and looks around? That’s kind of what it looks like. It’s intestine. It’s all ripply and alive.

Beyond the generally grossness of this, there’s my concern about hurting the damn thing, which makes me constantly aware of leaning against counters, putting on seat belts, etc.

So I’ve been rooting for a reversal in a big way. I’ve needed a couple tests to see if it was possible, and I had the appointment with the surgeon last Tuesday to see how possible it is.

It is. That’s the good news. The bad news is that he likely has to re-open my great big scar – the one that runs from above my belly button to my pubic bone. Hooking the guts back up carries the risk of a leak which could lead to sepsis – the problem I had in the first place. Or scar tissue could lead to blockage. The surgery also carries a risk of damaging the spleen or may require a temporary ileostomy which will then need to be hooked back up too. And I have to stay in the hospital for about a week.

That last one freaked me out more than one might expect, mostly because the father of a friend had a heart attack a few months ago and then had an emergency triple bypass and he was out 3 days later. It speaks to the seriousness of this surgery, which I had been significantly downplaying. Significantly. I’d read that reversals can sometimes be done laprascopically, so I figured, no big deal.

Only turns out it is a big deal. Hence, crabbiness.

The surgery is set for December 12th.

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Six Months

I just realized that today marks six months since I woke up from the coma. Huh.

I still get to the top of a flight of stairs and am impressed with myself. I wonder when that will get old?

I’ve been finding lately that I’ve been getting these sudden flashbacks (for lack of a better word) to when I was in the hospital, in the ICU particularly. I wake up and remember waking up in the hospital at night and being unable to reach the bell for the nurse, then lying there helpless and desperately thirsty, with a cup of water right there, only I haven’t the strength to pick it up. And waiting and waiting for a nurse to come in. Or I’ll get in the shower and remember the first time I showered in the ICU, how I was unable to reach my own head to shampoo, and how exhausted I was afterward. Or I’ll be cutting my toenails and get this memory of how I would snag the bottom of my pyjama pants with a hand while I sat up in bed, and pull my leg up towards my body to stretch my muscles, determined to have enough flexibility to cut my own toenails by the time they needed cutting (I succeeded  – thank goodness toenails grow slowly).

It’s like I can’t shake the memories of my own helplessness. It’s the control freak’s worst nightmare, really.

Lately, I’ve been having lots of people tell me how good I look, how healthy.  “So, you’re all better now, right?” they ask. Nope, I tell them, but I’m getting there. There are a surprising number of people who seem oddly vested in me being ‘all better,’ and respond to this by saying, “But you’re pretty much all better, right?” 

Truth is, I still wear out easily, although I am not resting as much as I was. I can now open jar tops that the children can not. I have a hernia and my colostomy is acting up, and even if I cannot have the colostomy reversed, I’ll need surgery to fix it and the hernia. All is not well and I have many ups and downs. I wonder why so many people keep saying so forcefully, “But you’re fine now, right?” Maybe that’s how a happy ending is supposed to go. Girl wakes up from coma and then her health problems kinda drag on isn’t nearly as inspiring as Girl wakes up from coma and 6 months later is back to her old self (which, frankly, wasn’t that great either, but we won’t go there now).  

The worst thing what we have taken to calling “coma brain.” I have forgotten stuff and continue to forget stuff. The kids will say, “Remember when we went to S’s house for dinner and Boo didn’t want to eat, etc..” and I’ll have no memory of it. I’ve taken to telling Boo, “I don’t remember that, although I’m sure it happened,” because she sometimes takes my forgetting as a denial that it happened.

I had trouble adding 2.5 + 2 + 1.5 this morning. Lots of trouble. It took me three tries. Mostly I have the sense of humour to blow something like this off, although obviously it can be very frustrating. I’m assuming it’ll improve with time, that it is the lingering effects of all the sedatives they poured into my body and it will fade. I try not to think of the brain cells that may have permanently gotten fried.

Mostly, I’m grateful that it’s only things like 2.5 + 2 + 1.5 that I have trouble with, and that I seem to still remember all the important stuff. And that I can still walk the dog and take the kids to get school supplies. I’m tremendously grateful that my children don’t seem any worse for wear from their ordeal. Boo will still cheerfully tell me about things that happened while I was in the coma. Asher still claims that his last birthday was his best one, “You know, except for the part where you were in the coma, Mom. Because even my teacher gave me a cool present and she never gives anyone presents.” (I said to him, “Wow, imagine what sort of cool gifts you could have gotten if I’d died!” He said, “Yeah! Oh wait, it probably wouldn’t have been worth it.”) Maya has matured tremendously and her anxiety has leveled off somewhat, which I suspect has something to do with facing one of her worst fears and getting through it.

And those stairs. I still can’t get over those stairs.

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I feel like I should post something, but don’t have anything interesting to write about. And I’m on my laptop, which makes showing you pretty pictures harder.

I’ve been spending this week slowly cleaning up my front garden, clearing away old leaves to discover what interesting plant is growing underneath. I frequently forget what I’ve planted, so I’m constantly being surprised by unexpected growing things.

I get tired easily, but I’ve given up on the back yard, so I have less to do.

I successfully took the kids swimming yesterday, in a very nice warm pool. Swimming was initially problematic for me, thanks to the colostomy. That makes for strange bulges in bathing suits, because I have a bag glued to my abdomen. Fortunately, swim shorts are in, so I bought a pair and wear it over my bathing suit. They don’t match at all, but it hides the bulges successfully.

I confess, used to think mildly negative thoughts about people who took their stuff and went into change rooms to change in locker rooms. How prudish, I thought. We all have bulges and floppy boobs. But we don’t all have colostomy bags and huge angry red scars running half way up our bellies and now I go into the change room to change, so as not to scare the other people there. And mentally apologize to all those of whom I thought ill.

In case you think I’m exaggerating, I’ll mention that as a family, we tend to be a fairly unconcerned about nakedness, but now when I walk out of my bathroom to get dressed, should a child be in my room, I get to hear, “Ugh!” before they make a run for it. The other day, I was still towelling off and as Maya hightailed it out of my room, I heard her say, “Note to self: never use that towel.”

My kids are not allowed to watch TV after school on a week day, but a few moments ago, Asher came up to tattle on his sister. I told him he could go down and tell her I was ordering her to turn it off. He disappeared and has not returned, so I fear he too has been caught in the seductive orbit of Hannah Montana. I must go rescue them both …

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