This day might kill me.

Working from HQ today.  (Actually, I’m taking a break to blog because nobody answers their phones in the middle of the day, so I’m not getting far with my call sheet.  Let’s just hope my candidate doesn’t walk out of her office and see I’m not working.)

I’m utterly exhausted.  I didn’t get much sleep after my PTSD freakout last night.  I still don’t know who the hell was banging on my bedroom window at midnight or why, but I guess things are okay because I didn’t get raped or murdered in my sleep and no one was outside the house this morning.

In the middle of a meeting this morning with two potential volunteer leaders, one of whom is a delegate to the convention, my colon threw a temper tantrum, and I had to excuse myself quickly.  (Luckily, I was not the one leading the meeting, so it wasn’t as embarrassing as it could be.)  I’m bleeding again, plus crapping out bright red-orange oily bubbles.  I haven’t eaten anything orange lately, so I have no idea what my colon is doing.  And now, this afternoon, the pain is coming back.  One week off the Entocort, and I was just starting to think it would be okay this time.  I haven’t ended up in the ER yet, but clearly my body doesn’t like going off the steroids.  This is bad for many reasons–long-term steroid use can screw with bone mass, teeth, and thyroid function, and in cases of UC where the patient is steroid-dependent, they’re much more likely to end up needing surgery.

So I have to call and get an appointment with my gastroenterologist again.  Fun times.  I was finally getting to the point where I wasn’t spending my entire life in his office, but apparently my colon has other plans.  It’ll probably been at least a month before I can get an appointment, and it’ll be a pain to fit it into my schedule with all the campaign stuff going on.  But I also can’t be crapping myself at the convention (T – 45 days and counting).  Hopefully he can tell me over the phone to go back on the Entocort so things don’t get worse before I can get an appointment.  He’s done that before, so he’ll probably do it again.

But now I’m afraid to have any caffeine or Adderall because stimulants + diarrhea = bad.  So I can barely stay awake right now.

I hate UC.

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7 Comments

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7 responses to “This day might kill me.

  1. You have every right to you to worry. If only worrying did not make it all worse. At least for me worry/anxiety sets my digestive system off. Not that I have IBD/UC. But caffeine and I have never been friends and I got a nasty ulcer from Naproxen used way back. So do what you must and try to not give a darn about the social aspects of needing to high tail it to the ladies.

    • Thanks–it helps to hear someone outside my head tell me not to worry too much about the social effects of this crap.

      Stress can trigger flares in IBD too. I can do caffeine in limited amounts if I’m not really sick, but in general I limit it because of my sleep issues. I can’t take NSAIDs at all–I used to take a lot, and then I developed an allergy. But it probably wouldn’t be good with my GI issues either.

  2. Hope, You have every reason to hate UC. It is a dreadful disease. My dad was a world famous — in his day — gastroenterologist, now deceased, alas, or I could ask him all sorts of Qs for you. He wrote the Clinical Gastroenterology textbook used in all the med schools way back when and loved advising anyone who asked him at any time…

    Be that as it may, I wonder about all that Adderall and caffeine. I know, I know, Mind my own beeswax! But I myself thought I could NEVER give up caffeine until my neurologist said it was that or i’d see no end to the chronic status migraines…I did, and added Riboflavin, 400mg and lo and behold, no migraines! The Adderall — oh, i know you know the drill. It is just speed, repackaged, and I think you have read my blog enough to know I don’t believe ANYONE needs Adderall, Certainly not for “ADHD” but I sympathize hugely, too, because once you’ve been on it, how on earth can you ever get used to life without it??? (Sigh).

    Did you know that I’ve been on Ritalin all my adult life for narcolepsy? And you know what, I resent the fact that OTHER people only like the me that takes Ritalin,…I believe they wouldn’t like me at all, not the sleepy UN-stimulated me. You know what I mean? So it is a problem. And again, I’m just thinking aloud, because I am not telling ANYONE what to do about meds they have taken for years. Only you know what works for you and what you want to do about it. But if it only makes the UC worse, it seems as if you might need to figure this out.

    EGAD, I sound like someone’s mother or worse someone’s grandmother..and I have never even had kids. Guess it is an occupational hazard once you get to be a certain age. Do forgive me. And take care of yourself. I’ve quite enjoyed our bloggish exchanges recently and learned a lot.

    Pam

    • Oh, it’s cool your dad was a gastroenterologist. I’ve got a great one–he wants me on as little medication as possible, and he talks to me like I’m smart but not a medical expert. But he’s always overbooked, so it takes ages to get an appointment.

      I’m just frustrated because I get sick every time he tries to take me off steroids. They’re bad to be on long-term, and steroid-dependent UC patients are more likely to need surgery, but no matter how slow we taper, I get sick when I stop them.

      I’m just sick of this disease affecting my ability to do the things I love. I had to stop running and martial arts, and it’s affecting my political work too.

      • Steroids are a love and hate thing for me. I hate them because of side effects but they have really helped me when I had status migraines and the pain didn’t go away for weeks at a time…On the other hand, chronic steroid use, yeah, I know that problem! It is as they say, a real BEECH! Osteoporosis and steroid psychosis are only two of the serious side effects that come to mind. It must be a very difficult balancing act indeed. A friend’s son eventually opted for the surgery, yes, the whole ball of wax, bur i must say that even that has not been without complications, surprisingly, with more surgery even afterwards etc…So it is an exceedingly difficult condition to manage, with or without steroids and I can only sympathize, greatly, yes, but sympathy is not much, considering what you are dealing with. Give yourself credit for everything you do deal with, though, And that you still get through the day, and survive, counts for a lot in my book. In the end it IS surviving that matters. It is a survivor’s grit that gets us through the day. I think you have it, Remember that when you think you can’t do another day. Grit is what counts in the end. Not happiness, not luck or fate or anything else but plain old grit and determination to get through…

        Yours,

        Pam

      • Yeah, I’m already genetically predisposed to osteoporosis, and my history of eating disorders also increases my risk. I’ve been on steroids for almost a year straight, since my diagnosis, except for a previous, disastrous attempt at going off them.

        The one I’m on, budesonide, stays in the gut, so it doesn’t have side effects as severe as systemic steroids. I can only take prednisone for three days max–after that, I get psychotic and suicidal. But I can take it very briefly to get control of a bad flare.

        I do have grit. I’m just too dam stubborn to give up, basically. I can’t let anyone or anything else win. I just like to fight. 🙂

  3. I hope you feel better soon. Flaring is never fun.

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