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Tuesday, December 8, 2009

If it smells like sh**, it's probably just your pills. As usual.

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Parosmia. Have I written about parosmia yet? PAH ROAS MEEE AHHH. Well, y'all are in for a treat.

To set the malodorous stage: in the last few months of A's. and my life in Central New York, I scheduled two final appointments with my gastroenterologist. Now, as readers of this blog will know (at least, have attempted to know since my posting consistency is heartily unreliable) my CNY gastro and I, we've had issues. We've had miscommunications. We've had ambiguous discussions. But when it comes down to it, we ultimately had a decent, successful doctor-patient relationship. I kept my appointments (except when I'd forget. Sorry about that, doc) and the doc would listen to my symptoms or lack thereof, and he'd prescribe me what I needed and discuss other options if necessary.

In our second-to-last appointment, Doc helped me set up our final appointment. He gave me a list of things I should ask for on my final visit to his office, so that neither of us would forget, including: a copy of all my medical records, any prescriptions for medications,* and Final Thoughts.** He asked how I'd been feeling, and if anything had been going on lately.

"Well, I'm stressed out," I said. (This was in May, so it was pre-honeymoon, post-layoff, post-graduation, pre-wedding, and pre-move.) "But I'm not feeling it too badly." HAH. I wish Doc could've come to the wedding, he would've laughed at me and dispensed some serious steroids.

"There is something I'd like to talk to you about, but it's a little embarrassing."

He made a moue at me. Seriously, it was a moue. If anyone could be French-pouty and make a living in CNY without being a pretentious academic, it was this guy. And I have to acknowledge that "embarrassing" to a gastroenterologist has to be taken with a grain of salt. I'm sure he's seen his fair share of explosive diarrhea and lived to consult about it.

So, I told him about my latest weird dilemma. For the past year or two, I'd been smelling excrement in traditionally-excrement-free situations, such as A) my work office and B) my bedroom and C) the corner grocery store/pizza parlor. Now, given my disease and the fact that one of my then-coworkers suffered from Crohn's Disease (she also had recently had surgery and had a colostomy done), I was inclined to accept I might have reason to smell shit, at least at work. But that didn't explain the randomness of it, or the varied locations.

My dear husband pointed out that, when I told him about what I was smelling, it wasn't as though I had the most sweet-smelling ass around town before my diagnosis. For the record, his ass is not too peach-blossomy, either***, so I worried that it too was skewing my sense of smell. We worked out a system, and one night while we were doing the dishes, I smelled the fateful odor again and asked A. if he could smell it. He couldn't. He stopped making fart jokes that night.

Anyway, so I told my doc. He gave me a funny look, and then pulled out the Physician's Desk Reference.

"Might be a side effect."

We looked up azathioprine. Nothing unfamiliar there. Then he turned to balsalazide disodium (my horse pill, Colazal) and we checked out those side effects.

"Parosmia," he said. "Now what is that?"

Not the most comforting thing for your doctor to say. But it can always get worse: his next stop was WebMD to look up what parosmia meant. A quick check to WebMD today showed that the definition no longer exists there. This proves to me that you gotta fight fire with fire; so I give you WIKIPEDIA. Woooohoo, Internet!

"Parosmia, also known as troposmia, is an olfactory dysfunction that is characterized by the inability of the brain to properly identify an odor’s “natural” smell. [1] What happens instead is that the natural odor is transcribed into what is most often described as an unpleasant aroma, typically a “‘burned,’ ‘rotting,’ ‘fecal,’ or ‘chemical’ smell.”

WHOOP. Love that fecal smell in the morning!

Questionable referencing aside, it's still glorious to know that I'm not fulfilling some latent psychological need by smelling crap, and that it's an actual side effect of my medication. A rare one, but still a side effect that I can't control.

It still doesn't help with the fact that my kitchen smells like crap to me right now. Grrrrrr, parosmia! Actually, in this case, I hope it's the parosmia and not mouse crap, because given our current digs, the latter is definitely possible.

Have any of you fellow UC/Crohn's sufferers out there experienced or had issues with parosmia? It's not a glamorous side effect or disorder, I know, but it's there. Trust me, when I develop super-strength or invisibility or the power of flight due to my meds, I will share that information equally so you all can jump on the mutant pharmaceutical bandwagon.








*I forgot about these. But you know what? After moving down to Texas, I called his office and asked if they could possibly set me up with some prescriptions, since I could not get a doctor down here until December 1st w/o paying through the nose, and he okayed it. He really is a great guy. I'd like to promote him, but I think I'd have to do it anonymously on CCFA's website, because I've been so critical and snarky toward him on here.

Just know that when it counted, Doc came through for me.


** We didn't do these. Probably because I think that he thinks I have some mental issues. Eh, see above *, I'm willing to be charitable when a guy comes through for me when it counts. Thanks again, Doc


*** SO THERE. TAKE THAT. YEAH I STILL LOVE YOU HONEY.

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4 comments:

  1. i have/ had parosmia and phantosmia since i was 20. dr. donald leopold is the expert on this subject. after i saw an article in the ny times i tracked him down and called him. so here's his temporary miracle cure. Take saline solution(i mix a little sea salt and filtered water in a dropper) get on your knees and place the top of your head on the floor. place saline solution in nostrils and leave for a minute or two. then get up. most times it works for me but occasionally i have to do it again.
    yes, you will look silly but who cares. it helps get rid of that terrible smell. and also, the salt water can sting a bit. it took me a bit to find my own personal ratio of salt to water. the store bought, for me, was getting to harsh. hope this helps.

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  3. Kari - thanks for the tips. Do you suffer from parosmia as a side effect from medication (as I do), or is yours a result of something else?

    Believe me, once I got diagnosed with UC I lost some of my worries about looking silly! There are too many reminders of the human body's fallibility to get anxious about it. I guess that's one good thing I've taken away from this disease. :D

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