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

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

Yesterday I had another colonoscopy. It went very clearly and very smoothly. I say “clearly” because most of my hospital-based experiences of late have been not unpleasant but very hazy. Tending to resurface in snippets and impressions, mostly. For example, this weekend I re-watched a documentary about the Hobart Shakespeareans that I had watched the last time I stayed at the hospital. I didn’t remember any of it, save for a couple brief shots. It was eerie.

This time I remember everything except for the part when I was actually knocked out. In the OR (or whatever they call it for procedures like this), they played Coldplay, I had a handsome nurse named Maudy, and I chatted with my gastroenterologist, Dr. Dolan–he performed the procedure–until after I saw the anesthesiologist inject the sleep goo into my IV and I even then had the wherewithal to say “I’m going to sleep now.” This time, after waking up, I remember everything, even the relatively detailed conversation I had with Dr. Dolan right afterward.

The only things that sucked yesterday were:

• Getting my IV. The first nurse tried and I noticed it hurt a bit more than usual. I wrote this off as being because this particular department doesn’t pre-numb with lanacaine. But then I looked down and there was a pile* of blood the size of a large slug on my arm. I am afraid of a lot of things, but fortunately blood and needles are not among them. The nurse apologized for “fishing around” so much and got a new nurse. They had to use my other arm and never quite got it right (it was uncomfortable the whole time it was in).
• After I was ready to go home, I had to wait a solid hour for someone to come and draw blood for an unusual blood test (more on that later). Because of my uncomfortable IV I couldn’t really bend my arm, which meant I couldn’t really read my book. Usually when I’m hanging out in the hospital I’m sleepy enough to doze off, but this time I was just impatient and restless.

The diagnosis of Crohn’s is confirmed. I even have photos to prove it. I toyed with putting them up with this post, but they are slightly disturbing, enough that I will hold off for now. Suffice it to say I have a region of my ileum (right near where my small intestine joins my big one) that is very pissed off–red and plumped up. This is why I keep landing in the hospital because it creates a partial blockage of everything. Surprising: it’s not at all related to my surgery in February, which is what had the doctors all afluff and confused.

How do they know I have Crohn’s? Several things pointed toward it:

• The pathology of my removed tumor and the area around it (though not entirely conclusive)
• Symptoms
• I tested positive for having antibodies against Saccharomyces cerevisiae. This is more commonly known as bread or brewers yeast. Odd, huh? My body thinks beer yeast is dangerous! So do many other people’s bodies fighting Crohn’s disease.
• The way my tubes looked yesterday.

So, bring on the meds! I’m now taking prednisone (a steroid) and Pentasa (an anti-imflammatory agent). The blood test I had to wait so long for yesterday is going to test for something (I forget exactly what–an enzyme?) to see if I’m a valid candidate for 6-Mercaptopurine, an older cancer drug used to treat non-Hodgkin’s lymphoma and leukemia.

* It was. A pile of blood, that is. So viscous.

Tags: Crohn's, health

Hi everyone. It’s actually surprising how many people read about my health travails and even more surprising how many people genuinely seem to care. So say my stats and my comment log, anyway.

I’ve been neglectful in faithfully updating in this regard in the past few weeks. Perhaps I hope it will magically evaporate, go away, cease to be.

I didn’t update when I went back to my gastroenterologist and he revealed to me that I’d tested positive for an antibody that indicates that I most likely indeed do have Crohn’s disease. I didn’t update the daily feelings of “ugh” and malaise. I thought I could be bigger than that.

On Wednesday night, I ended up with a free evening (in the midst of a two-week stint of family visits), so on my way home from work I got some takeout pad Thai and had a solo meal, with lots of hot sauce and a beer (just one! I swear.). By the time I’d finished eating, I felt uncomfortable, puffed up. I reclined for a while and read some of “Sister Carrie.” No better. I took a bath. Not better, worse. By the time David got home from his evening activities, I felt bad. Stabbing, clenching pains in my gut accompanied with swirly nausea. I took an Oxycodone tablet I had left over from my last hospital trip and waited. Nothing.

After about an hour I told David I needed to go to the hospital. I’m glad we did. The ER was busy and there was some wait. I felt like jumping out of my skin or screaming. At least I knew what was wrong: I staggered right up to the desk and said “partial bowel obstruction.” And I knew exactly what I needed: get me an IV, then Zofram for the nausea, then Dilaudid for the pain–that’s right, nothing can touch this pain, not even morphine, except Dilaudid. Dilaudid is a miracle drug in about a hundred different ways (and, according to Wikipedia, it’s three times stronger than Heroin by volume).

This time they didn’t make me stay. They watched me for a few hours, gave me a few more drugs to help things relax and move through and then sent me home at 3a.m. with a prescription of Dilaudid in pill form (I’m amazed they let people take the stuff unsupervised!). I slept all day yesterday and humped myself into work this morning at about 10:30.

I’m scheduled for another colonoscopy in April. More exploration to see if it really is Crohn’s that has me all wrong. What I’m struggling with now is the emotional fallout of the situation. I can’t deal with how it leaves my coworkers in the lurch when I am out for a few days here and there. Or my family, or Mr. Pencil. I feel like I can’t depend on being OK. I don’t want to despair but sometimes it’s hard not to.

Anyway, onward. I have a lot to do and look forward to.

UPDATED: Due to my fun with the ER, my GI has moved my next colonoscopy up to next week–on Mr. Pencil’s birthday, no less. Crikes. Wish me luck.

Tags: appendix, health, hospital

I got out of the hospital yesterday late afternoon, and spent from then until now sleeping–I never sleep that solidly (though I do sleep a lot) in the hospital. I had to drink barium again (bleck) yesterday, though in a much smaller dose than my first CT scan in January, accompanied by anti-nausea meds (magical!), and mixed with something specific to contrast my belly bits. Then they X-rayed me periodically for about 45 minutes. The results: swelling has gone down markedly and I’m back on the heal. I can eat, but am restricted to a low-fiber diet. This feels entirely non-intuitive: emphasis on processed ingredients, white grains, refined things.

A ray of good news comes through all of this: three experts–my surgeon, her partner surgeon, and my gastroenterologist–are skeptical of the Crohn’s disease diagnosis. My GI, especially, who sort of specializes in the condition. As he puts it, the tissue from my surgery that was “consistent” with Crohn’s disease was not actually “diagnostic” of it. Plus, they all add, it’s virtually impossible that I would have had a flareup of Crohn’s so soon after the removal of its source. So, yippee? More doctor’s appointments in the future, but I think I’m near the end of this fun.

Tags: appendix, Crohn's, health, medical