The last few months have taught me that Crohn’s is a systemic disease. It doesn’t have a sense of place or boundaries. It’s not shy to start knocking the doors of my joints or steal energy from my mind or make me feel confused and broken.

I’d sum up the biggest problem right now as: prednisone. I can’t live with it and I really cannot live without it. It’s that sort of abusive relationship. I caved and gave into it over the past few months, but then my eye doctor says I have early signs of glaucoma. Most excellent. Thanks, roids. The short story is: I feel pretty good when I’m around prednisone, but it leaves bruises in hidden places. Kind of a soap-in-a-sock attack.

The pattern is like prednisone-induced weather. We start weaning me off in the hopes the other drugs I glug down in great quantity will do their jobs. And everything is great: I feel awake, my face de-chubs, my skin calms down, my heart stops acting like it’s going to leap out of my chest.

But then one day I’ll wake up and I’ll see, at the very horizons of my senses, a fog bank, or maybe they are storm clouds. I’ll feel a bit off. A bit like the pressure is changing inside me. Then the cold front will hit midday with great force, the first downdraft being a profound exhaustion that leaves me racing for the office couch and slowly blinking my way back to life. Then I’ll start noticing pain, in very specific parts of my center, in my tubes. Sometimes there is an eye to the storm, long enough for me to think I’m being a big old baby. And then whammo. Every time. Take it from me: sipping drinks with girlfriends in a nice bar is not the place you want this to happen (this was Wednesday).

Then I make an appointment with my GI, who pokes my stomach–such a simple poke and he can tell so much–and says “Oh, this isn’t good.” And then it’s getting jabbed a few times to count things in my unholy blood and discussions about bumping up the prednisone again, just for a little while. Oh, sure.

I think the cycle is finally being severed. The final verdict on the 6-mercaptopurine (6MP) I’m taking is: fail. It’s time for the bigger guns. Grave nods in the doctor’s office. This time I’m getting a restraining order, steroids. You just listen. I’ll really press charges next time.

I’m going to try Remicade (infliximab). That means every few weeks I’ll trudge off to the St. Vincent “infusion” center for a multi-hour process. Remicade has mouse proteins in it. This is somewhat yikes because some people have a pretty much fatal allergic reaction. So they pump you full of specific doses of Benadryl before giving you the IV drip of Remicade. Plus the mutant factor of mouse-plus-human protein combo is extreme and will probably stoke my ability to freak out my friends.

So I imagine it’s a lot of drowsing and laying around while they dose you and then stare at you for a while afterward to make sure you’re not dying or whatever.

Now I’m in prep mode. I have to go to the clinic again today for a TB skin test. It involves blowing a bubble in my skin, which I must say creeps me out in that same way that coccoons and squished cockroaches and alien spaceships do. But apparently if you have latent TB and you get Remicade you like shrivel up and explode and die or something.

The internet says: “The cost of each infusion of Remicade is $1400.”

Zoinks. I guess I have expensive taste.

Tags: Crohn's, health, prednisone, remicade, steroids

Voices of Crohns Disease - Well - Tara Parker-Pope - Health - New York Times Blog: “Today, “Patient Voices,’’ created by my colleague Karen Barrow, gives a voice to Crohn’s disease, featuring the stories of seven men and women who talk about living with the disorder.”

Nice write-up today on Crohn’s on the New York Times site. Tres interactive.

(Via Mr. Pencil.)

Tags: Crohn's, health

I knew I’d been not quite myself, and that I’d been fighting off some low-grade blahs over the past few weeks. Our anniversary trip to Walla Walla wasn’t as wonderful as it could have been, for example, because I was tired and crampy and uninterested in wine tasting for the most part–a travesty*.

But over the past couple of days it started getting harder to ignore. I realized that I didn’t have the energy to blog or do anything useful, and hadn’t for some time. By the night before last–our true anniversary, and after a very pleasing meal at Sel Gris–I felt awful. I rolled around in bed yesterday getting a little bit of work and a lot of moaning accomplished.

My visit to my doctor today confirmed what I already quietly knew. My Crohn’s has flared up, my “spot” in my tubes (near where my surgery was) is back (”I can feel the mass again”, he said), and things are inflamed and unhappy. I feel kind of like you might feel when you’re sick: shaky, weak, tired and bleh. But, additionally, things in my middle parts burn and seize.

My doctor seemed very sad. “This disease is not fair,” he said today.

Some things of note:

• I have to go back on prednisone. The implication is that my departure from the drug brought this on. There is some discussion at looking at the biologic drug Remikade, but my doctor is concerned about the potential side effect of lymphoma (yikes). Then again, lymphoma is a possible side effect of the drug I’m on now (6MP). I have swollen glands right now but my doctor says they’re “not pathological” which I take to mean that either they’re OK or their lying problem is under at least some sort of control.
• My back hurts and has for a few weeks. Not Death Pain or anything, but burning and noticeable. Apparently, this rheumatoid-esque sacral-ileitis is strongly linked to Crohn’s. We can add that to the list.
• The timing of this is dreadful. I have friends visiting from the UK and staying in my house, and I’m hosting a large house party tomorrow.
• At least he was kind enough to prescribe opiates for the worst of the pain.

July was a very intense month for me. Wonderful, mostly. Work was very challenging but also joyful. My postings on this blog and elsewhere were broadly read and experienced (I got literally a hundredfold increase in traffic). And the New York Times thing added more folks to the party. There was contention, which always happens with broad exposure. Though most reaction to various things was positive, some people on the Internet said some fairly aggressive negative things about me. I wholeheartedly support their First Amendment privilege, even if their comments were caustic. I’m just glad all of this happened last month, because now I feel a bit thinner of skin. What I need now is a bit of quiet and gentleness. Family and friends and kind words. A few escapist novels, a glass of wine and a good nap.

* Don’t misunderstand me, it was still a great trip. When I have more energy and time I’ll post some photos and talk about it.

Tags: Crohn's, health, Life

It’s redeeming when one’s gastroenterologist comes into the room and, grave and serious though he tends to be, says “You look really skinny.”

And that’s the theme of my current health situation, which is to say: optimistic.

Since my dosage of prednisone has been reduced from 40mg to 5mg (and now I get to wean off entirely within the next few weeks!), I’ve lost 10 pounds, my face is angular again, my skin isn’t gross, and I can sleep most nights.

I continue to take 6-mercaptopurine (6MP), a leukemia drug that just happens to do very well for Crohn’s, as well. I’ve been having frequent blood tests to monitor things like my white blood cell count and also signs of toxicity. As I am heterozygotically partially deficient in TPMT I have to worry about my body’s ability to metabolize 6MP correctly, but it seems perfect so far. My levels are great.

So it looks like I have a reached a handsome stasis. I will continue taking the 6MP and an anti-inflammatory called Pentasa for, oh, I don’t know, forever?

The doctor’s feeling is that I’m very much in a nice remission state and that most of his patients that get to this point for the most point stay there. Well, yay!

Yeah, sometimes I don’t feel super. Sometimes my tubes bark. Sometimes I feel barfy. Sometimes things get a bit messy. But it’s OK. Most of the time I feel certifiably fine.

Tags: Crohn's, health, yay

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