Thread Drift

[Duck on Wheels]

I saw my specialist today and am trying entocort, the mildest of the steroid drugs for Crohn's. The scope did not find anything, but the other test indicated that the problem is in an area beyond the reach of the scope.

That seems a bit odd. Supposedly entocort only works in the "end zone" so to speak, hence the name. Supposedly it is not systemic (i.e. does not get taken up in the blood stream and thereby have effects throughout the body). So if it only works locally towards the end of the intestinal tract, then that would be an area within scope reach, right? Then again, entocort actually does get taken up systemically, in spite of what they say. That's why I got those days of suddenly feeling knocked-out-exhausted as I was taken off entocort step by step from 3 to 2 to 1 to 1/2 to no pills a day, several weeks per step. So I guess if it's systemic after all, it can work anywhere in the system ...?

I had two good energy days this week, and today was pretty low. I will try to lift weights, slowly and not very much again tonight to see if I can work through this fatigue. I also note that the times that I have enjoyed a half glass of wine, which is forbidden on the diet, the following day is a good day. Wine, anyone?

What I used to find with wine is that, due to the vasodilation effect (alcohol makes your blood vessels widen), internal bleeding so slight that I wasn't aware of it would suddenly become a flood of rectal bleeding after I'd had a glass of wine. Like that one night in a hotel in Stockholm when I woke up in a pool of blood in their once-clean white sheets. I did my best to rinse them out in the bath, and left a generous tip when I checked out, but I still don't dare book a room at THAT hotel again. Still, the dinner was delicious, including the wine. It was shortly after that trip that I worked out what was happening -- not an allergy to wine, but simply a widening of the arteries. Now that I have an ileostomy, and also now that the inflammation is pretty much under control, I can again drink a glass of wine now and then without any obvious ill effects. But since my recent blood test results indicate that I do have some internal bleeding going on, I haven't been indulging much lately. Gotta get my hemoglobin levels up first.

Aaaaanyhooo -- I'm very glad to hear that you're one of us bloomingly healthy Crohnies, rather than a typical pale and skinny one (like I was for a time, but not now). The cramps can still be, literally, a pain. But let's hope the doc is right that your Crohns is slight, limited, whatever. And let's hope (s)he gets even that under control. As you say:
Hugs and butterflies

[mimitabby]

Gee, Duck,
I'm glad i didn't send you cookies that you couldn't eat!
m

[Kitsune06]

Oh, cookies?
Here, Mimi... my address is... *hands Mimi the "OMG Cookies!" card*
Anytime.

[Xrayted]

*X's head snaps in a full circle up in the OR* Did I hear cookies??? Mmmm, I'll take some off yer hands Mimi. As a matter of fact, I love to bake so how's about a cookie exchange sometime after I get out there? I'm not gonna guarantee that mine will be healthy or low fat... but they will be dang good.

[mimitabby]

my cookies are healthy in that they are made of wholesome ingredients
and can be a good part of a healthy diet.
Eggs, butter, etc... (wheat flour, sorry guys)

[Kitsune06]

*X's head snaps in a full circle up in the OR*

I love how she can do that. Goin' along, normal convo, talkin' right over me, and I've gotta say a word or two... 'cookies' comes to mind... and *bam!* all the attention in the world.
I am *dreamin'* of warm, soft tollhouse-style cookies atm...
or those devilish thinmints. *salivates*
mmmmmmm

Mimi- I suspect you will have visitors again sometime

[mimitabby]

uh, i don' t MAKE tollhouse cookies. wrong house. I make biscotti.

[Kitsune06]

*droooooooooooooooooooollllls* mmmmm biscotti and coffee sounds even better on a day like today.