Wednesday, December 01, 2004

This problem...

I'm not sure why I'm doing this, blogging about this. Perhaps it would help to talk about it a bit. This is my hope. I have other blogs, and websites, but this isn't appropriate anywhere else. And it's embarrassing. The disease(s), the(ir) effects are really embarrassing.

Ugh.

I've had Crohn's Disease and Ulcerative Colitis for about 8 years now. I think overall, once diagnosed and treated that is, I've been very lucky. No scary surgeries, no body alterations (colostomies, none here), no extreme side effects (prednisone is a bitch).

Being "lucky" compared to others afflicted with this doesn't mean having an easy time of it though. There are problems. Daily medications, the need to avoid certain foods, always paying attention to what's in what (what does that food/drink contain), always aware that there could be a "flare" (this is what I call it when things go badly) at any time for any reason. And at anytime, everything to get very painful.

Scary stuff.

I think stress has a lot to do with it. Flares and problems are endless trips to the bathroom with no end (of the need to go) in sight until I down another Imodium tablet and hope for the best. And god help me if that doesn't help. There are much worse remedies. Enemas was mentioned at one dr.'s appointment recently....I said, "er...no thanks!" Changing medications is an option. But I'm wary about doing that.

Right now I'm taking two 50mg tablets of mercaptopurine daily. Plus a multi-vitamin, vitamin e, acetaminophen (4 every AM, though I probably shouldn't be taking so much every day) and an Imodium tablet. That's just in the morning. At night, I take one fish oil capsule (supposed to take two, but I only take one), a vitamin a & d capsule, calcium (when I remember it and when I'm not having a problem), and a half an Imodium tablet. (also Singulair, and albuterol as needed, but thats not for cd/uc)

Not too much. But at the same time, that's a lot.

There's quarterly bloodwork needed to check white cell count and kidney function (because of the mercaptopurine). It used to be every three months but I guess I'm doing well enough that my dr. decided every 4 is good enough. Fine with me. One less trip to worry about.

6mp is another name for mercaptopurine. There's also the brand name Purinethol. I was on Purinethol for 7 years and then the insurance company decided to change my prescription to the generic since the dr. stopped specifying "brand name only" on the prescriptions....that was scary at first because when I first started taking Purinethol, the dr. stressed that he wanted me to take the brand name version. (kickback, or more faith in the more expensive brand? hmmmm)

So far, the generic seems to work just as well. All versions of this drug lower your immunity so if you were susceptible to illnesses before, you're going to be much worse off now. As I am. Echinacea helps. Or I tell myself it does. Just can't take it for longer than a week (or less) at a time or you can build an immunity to it.

I wondered about the Imodium though. Wouldn't taking that daily cause me to build up an immunity to it? The dr. says "why would you?" Um.....(thinking about the echinacea's effect)...."because I'd be taking it every day?" He didn't really have a decent response either so I don't feel so bad. It still works and that's what matters.

Guess that's enough for now.

1 Comments:

Blogger damppuppy said...

You're doing this so people, like me who also struggle with ulcerative colitis, know that we aren't alone. Yes, it can be embarrassing at times, but never be ashamed. Everyone who has it does what they can to deal with it. And we all have to help each other out. I'm hoping to start blogging on my progress weaning off prednisone. I'm trying to get a database of UC links going. Check out my del.icio.us links on UC.

http://del.icio.us/damppuppy/ulcerative_colitis

12:05 AM  

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