I went to the doctor this morning in a glum mood because I knew things weren’t quite as good as they were a few weeks ago, internally. About a week ago, I started feeling kind of bad in my tubes and I figured that was taps for getting off of the prednisone.

Indeed. What is happening to me, this getting sicker again, is not uncommon. I have tapered my prednisone dosage down to a fairly low, if steady, state. And now the disease comes back. It happens.

So now I have to add 6-Mercaptopurine to my drug diet. As Wikipedia puts it, it’s an “immunosuppressive drug used to treat lymphoma.” Chemotherapy for Crohn’s.

The Wikipedia entry will also tell you:

Patients who exhibit myelosuppression or bone marrow toxicity should be tested for Thiopurine methyltransferase (TPMT) enzyme deficiency. Patients with TPMT deficiency are much more likely to develop dangerous myelosuppression. In such patients it may be possible to continue using mercaptopurine, but at a lower dose.

I do have a Thiourine methyltransferase enzyme deficiency, though it’s partial, not complete. That means fairly regular blood tests for me to make sure my marrow is not going south on me. I hear it’s pretty gnarly when that happens.

This is a bit of a low trough in my otherwise decent progression. I’m glad I’m not in the hospital, but I have fallen into a general malaise (nausea, tiredness, general “down-ness”) that I had thought myself breaking free of. I’m trying to keep my chin up.

At least, for now, I don’t have to get Remikade infusions. I’m glad, because one of the awesome side effects of that drug is lymphoma.

Hell to the no.

Tags: Crohn's, health

I am a geek and that’s what I do for a living, generally speaking. I am notoriously bad at sticking to any sort of routine, and I have a penchant for sleep. Early mornings make me feel hungover even when I’m in the best of health. Everything seems fuzzy and nauseated around dawn. That paleness around the horizon enervates me.

When left to my own devices, my diurnal patterns are sheer chaos. I think you’d need about infinity axes to graph the ups and downs. When left to my own devices but with just a bit of self-discipline, I still tend towards the later getting up times.

Add to all of this a dose of steroid-induced insomnia and occasional turmoils in my tummy tubes, as well of a few years of Crohn’s-worsened fatigue and a general tendency towards lethargy and sleep-jarring anxiety and you end up with me sleepy a lot of the time.

I realize that, other than knowing about the people around me, I don’t know much about what the typical day-to-day schedule for people my age is these days. What time do you get up? When do you go to work? I usually get up between 8:30 and 9:00 and get to work around 9:30. I don’t really take much of a lunch break and tend to leave around 6:00pm. I go to bed around 1:00am these days.

What prompted this incredibly quotidian question? It’s that I see the people I follow on Twitter fairly consistently announcing that they are off to bed a lot earlier than I would go to bed, and heading for happy hour sometime around 4, which leads me to think their whole day is shifted earlier than mine. Plus it kind of piggybacks on my napping post.

Regarding comments on my napping post, anyway: Actually, Todd, I would nap every day if given the option. I think the thing is this: some people have the urge to sleep in the middle of the day and some don’t. I think it’s deeply programmed. I get wretchedly sleepy sometimes. However: since I have started treatment for the Crohn’s I have noticed that my daytime fatigue has sharply dropped. For the most part. Excluding today because I was up til 4:00am last night with tube-pain.

What’s tricky is that, at least at some points in the past, I have felt the distinct curdle of nap-condescension from some quarters. I have a suspicion that for people who don’t crave them, at least some people, they seem silly and wasteful. All’s I’m saying is: don’t tase me, bro*.

* That is the first and last time I have/will ever said/say that.

Tags: schedule, sleep, tired

Bah. The manyfold side effects of the prednisone I’m taking for the Crohn’s are coming home to roost.

My face, subtly but surely, is starting to puff up like a melon. And my skin? Strange, fragile, soft and shiny.

I’m self-conscious. To say nothing of the constant eating and its consequences. Bah!

But this, too, shall pass.

Tags: Crohn's, prednisone, self-conscious

It’s another week in the life of my general medical excitement. And what have I learned this week?

1. Last week involved eight separate biopsies from inside my bits. All came back normal (phew) except for the section in which I’m currently having my Cronn’s-inspired fun.
2. I am a heterozygote: genetically partially deficient in Thiopurine Methyltransferase. What the hell does that mean? Well, it means I can’t really make enzymes to metabolize 6-mercaptopurine. In English? I have to be real careful if they ever put me on the old-chemo-drug 6MP because I can’t really metabolize it and could end up with bone marrow toxicity. Yuck! p.s. This was what my “odd” blood test was last week that left me waiting around the hospital for so long.
3. “People who are left-handed have a significantly higher risk” for Crohn’s. Hey! I’m left-handed! Cool.
4. New treatment ideas for Crohn’s include purposely infesting oneself with a parasitic worm (by swallowing eggs). Regions where this worm is endemic have effectively zilch Crohn’s.
5. I’ve started on probiotics to kick-start some stuff in my bellyguts to both spur on the good kinds of bugs and also to kick down my immune system’s attack in general.

These are the pills I’m taking in the morning these days. The evening regiment is similar.

Tags: Crohn's, health