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The past two weeks haven’t exactly been the best weeks. While I’ve had some health problems, thankfully I’m not really “super sick.” Instead, I seem to be annoyingly sick. Maybe sick isn’t even the right word.
As I had mentioned before, week before last I was at work and suddenly had these dizzy spells and felt as though I were going to faint. We guessed that maybe it was the antibiotics I was taking for a staph infection. Since I’d already been on them six days, we decided to quit them and see if the dizzy spells went away. They did, sort of.
I slept huge chunks of last weekend. I have a tendency to sleep when I’m sick, or about to get sick. But, given my stress levels lately, I chalked up the 12-hour naps to pure exhaustion. And maybe that’s right. Maybe I’m just worn out. Monday went fairly well at work, but about a half hour before I was supposed to leave to go home I felt “the itch.” It was a “code brown” – an ostomy leak in progress. Since it was so close to the end of the day, I rode the bus home praying that the dike wouldn’t break completely before I was able to attend to it.
When I got home I discovered the sore area under my stoma was bleeding again, and as I tried to clean it, it was quite sore. I’d had several leaks the week before as well.
That same sore spot was acting up before I went to NIH, so I’d requested to see an ostomy nurse while I was there. She came, looked at my little skin issue, helped me clean it well (because it was so sore) and suggested I seek out an ostomy nurse at home who could more regularly help me.
I hadn’t exactly gotten on top of that mission when I got home. The dizzy spells started, work was falling apart, and so I put it off. I hadn’t really had much luck successfully connecting to an ostomy nurse at home, and I expected it to be a hassle.
Monday evening I seemed to be having “code browns” every few hours. I couldn’t keep a pouch on, which meant I pretty much didn’t sleep. By morning I’d broken a record – four hours leak free – and so I thought maybe I’d finally had “the magic touch” and off to work I went. By 10:00 am I was having another “code brown” and had to go home.
Thankfully I have the sort of job that you can pretty much do from home easily – that is if your computer is working. Mine, however, has been dying a slow and painful death for months. Ryan’s laptop is great, but not for pulling 12-hour shifts. I tried to wade through work, exhausted, moving back and forth from my desktop to my laptop, all the while changing my ostomy every so many hours.
Wednesday I was afraid to go to work. I hadn’t slept again for fear of waking up in a pool of pooh. Every time I have to take a cab home from work, it’s about $25 with tip. I can’t do that every day.
So, I struggled to work from home and track down an ostomy nurse.
The last time I complained about ostomy issues at the Family Medicine clinic, I got a referral to the wound care clinic 28 days later – hardly a hell of a lot of help when you’re afraid to go anywhere for fear you’ll find yourself in public with poop running down your legs. My good friend “Dr. Karen, a.k.a Karen Tillman” coached me through that little crisis. I showed up at the wound care clinic, even though I no longer needed their help, just to try to connect with an ostomy nurse. I got a pager number and it’s been a very weird catch-as-catch-can arrangement.
So, by Wednesday this little project has reached a new level of urgency. Even though I’ve only seen my GI doctor once, I really liked him. I thought, being a GI doctor, he could probably suggest how to get plugged in with an ostomy nurse. So I tried to call his nurse. I guess I must have sounded really desperate on the phone (probably the lack of sleep coupled with frustration) and suddenly my GI doc was on the phone telling me if my stoma was bleeding, to get myself to the ER. No, no, no…I tried to explain what was going on. He was so nice. Within five minutes the hospital’s ostomy nurse was calling me back. Yes, progress!
It turns out the reason I’ve always had such difficulty connecting with the ostomy nurse at KU is because they don’t actually have an outpatient ostomy clinic. As I might be requiring a bit more in the way of ongoing care, she referred me to St. Luke’s Hospital.
I went to see my new ostomy nurse today for the first time. She was lovely and very helpful. She tried a number of different pouches, but decided the one I was using was probably the best for me because my stoma is a bit close to my waste line.
The one thing she did suggest, however, was kaltostate for the bleeding area. This stuff comes in small sheets and is, essentially, seaweed (although it doesn’t look like the seaweed you eat, so there’s probably more to it than that – I’ll be looking it up soon). You cut off a little strip the size of the wound and it both protects the wound from being torn open again when the pouch is removed, and it helps clotting. She set me up, and so far, I’ve had a leak free day.
I needed it. I’m so far behind at work. Between my incredible fatigue this week, the constant ostomy distractions and my ever crashing computer – I haven’t exactly been on top of my game at work. That, coupled with my boss being out etc….and let’s just say if I weren’t already stressed – it feels as though someone is slowly turning the stress meter up and up and up.
And this brings me to the dizzy spells. They’re back, but it’s hard to explain because they aren’t like the ones I had right after I got back from NIH. And I don’t know that dizzy is the right description. It isn’t as if the room spins or anything. It’s more like suddenly I feel flush, and then odd, as though the world is far, far away. I feel short of breath, almost as though I’m being closed in, except I’m not.
I thought perhaps it was the incredible stress I’ve been under – that maybe it was psychological. And maybe it is.
But, as if I don’t have enough going on right now, last night my ear started hurting. It’s been hurting on and off, but not badly. It seems to hurt more when I move my head. When I went to the doc for the dizzy spells, they checked my ears for an ear infection and they were fine. I’m wondering though if maybe it’s more of an inner ear thing – my ear hurts but not constantly, and not that badly.
The other possibility is my thyroid. Despite starting medication for an under achieving thyroid, my thyroid numbers are still moving in the wrong direction. Could that be causing any of this?
On top of all that, I think I’m getting a urinary tract infection.
I sound like the biggest hypochondriac alive! I’m afraid if I march into my doc’s office with this whine list, she’ll think I’m bonkers. I have an appointment next week, so I’m hoping some of this stuff just goes away by then, or at least doesn’t get any worse. I can’t miss any more work!!!!!! I’m almost beside myself.
Read the complete post at http://feeds.feedburner.com/~r/LivingOnTheFrontlines/~3/159324916/seaweed-my-new-best-friend.html
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