Take it out

I used to think I didn’t care about my appearance that much.  As long as I didn’t smell bad and my clothes were clean, whatever.  I told people I failed girl school because I never learned to care about hair, shoes, or makeup.  I had that privilege because I was pretty.  I didn’t realize at the time what a privilege that was.

Now I care because my hair is falling out.  In large clumps.  I can’t pull my hair up in a ponytail anymore because you can see the bald spots.  I put off washing it because I know the handfuls of it in the bathtub drain will upset me.  There are people who have literally never seen me with my hair down until a few months ago.  They comment on it, and I laugh it off by saying I woke up late and didn’t have time to put it up.  Then I slip off to the bathroom to make sure I’ve arranged it so the bald spots aren’t too noticeable.

It’s the UC meds.  Particularly the 6-MP.  I started losing more hair than normal when I started it at 50 mg back in August, but it wasn’t too bad.  Then in December, my gastroenterologist upped the dose to 75 mg when I flared up.  Since then, it’s been pretty drastic.  In fact, I’m pretty sure the sweater I’m currently knitting has as much of my hair as it does of the sheep’s.  Currently, I can hide the hair loss a lot because it’s winter in Massachusetts, so hats are normal.  But it won’t be winter forever.

If it were putting me into remission, it might be okay.  Sure, I’m not as sick as I was when this first started in May…but I’m still sick all the time.  I still turned down an invitation to apply for a job I’d love and be awesome at because I’m too sick to handle it.  I’m still up 4, 5, 6 times a night to poop.  I still had to turn down half the food I was offered at the food bank because almost everything contains foods that make me sicker.

I’m seriously considering asking my gastroenterologist if he will just take my colon out.  I’m not quite sick enough that he’d suggest that, but I just can’t take much more.  I act like it’s fine, like I’ve adjusted to it even though it sucks.  Sometimes I think I have, and maybe I have in a lot of ways.  But not really because right now I’m falling apart over it.  I’m just so tired of everything about this.  I know a colostomy causes all sorts of difficulties of its own, but at the moment, it seems preferable.  And I can’t tell if that means I’m crazy or not.



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5 responses to “Take it out

  1. sick and tired of being sick and tired. i know that feeling well only i am not as sick as yourself and i have my hair so i can’t imagine how tough all this is for you and i can’t make it better. i can say how much i wish things would get better for you, that i am sure you will come out the other end of the tunnel at some point. until then i hope you can hang on, find a way through, be easier on yourself, love yourself. you can still wear some great hats in summer, headscarves are back in a big way to. right now won’t be forever. my very best wishes to you, chin up

  2. kat

    youre definitely not crazy. what you are going through i dont think one can ever accept or adapt to. and it is horrible, and unpleasant and upsetting. and you sound like you are dealing as best you can.

    it makes perfect sense to consider a colostomy. it would make dealing with it a little less difficult, a little more tolerable. i know you say you probably arent sick enough for your doc to consider that, but it sounds like it would at least be worth asking about, finding out if it is even a possibility, given how you are feeling and coping now.

    good luck and sending warm and caring thoughts your way.

    • I hope I’ll be able to ask him. (I almost wrote “I hope I’ll have the guts to ask him,” and then I realized how ridiculous that would be in this context.) I’m not good at communicating my distress unless I’m having a total meltdown, which is something I need to work on. I just really NEED something to work SOON because I can’t take much more.

  3. Maybe writing it down will help?
    I don’t have any experience on this and therefore no advice whatsoever. Besides from the writing it down/emailing the question.
    Thinking of you!

  4. When I have to ask for help at the doc’s office I take D with me and tell him to not let me undersell the whole idea. I’ll sabotage myself if given half a chance. Is there anyone from your old team that might go with you to keep you on track and explaining how bad it really is for you?

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