Posted 10/25/2007 8:22 AM (GMT -7)
So the specialist was just a surgeon, but he was able to get us in really quick (since we're out of town I'm sure) with a GI guy who is apparently a God to hear his patients talk about him. Unfortunately he's retiring Dec 31st, but we'll deal with that later. I was scared when I went in b/c I was bleeding a lot and bad urgency, etc, so I was afraid it was getting worse. Since I didn't get to see the guy originally on Monday, I had taken 40mg pred just to try and queal the pain since it was so constant, but it did nothing. After I talked to the guy on Tuesday afternoon (before I took a second dose of pred) we decided on Remicade and Imuran which is TOTALLY stressing me out. Took 30mg pred (weaning down 10 a day till it's gone).
Well, that night I went and ate at Pancho's in a deep funk. For those who don't know what that is, it is THE worst for you fake mexican food in existance, and I ate a lot of it. Even when I'm not sick i shouldn't have made it out of there alive.
But I did. And I didn't have to go to the bathroom for 3 hours. And then it was a non-event really. So I waited all night awake for it to hit. Nothing really. Went at 4am,5am, 6am, and 9am. All mostly non-events except one that I had to wait on the bathroom. No blood, very very little pain.
WTH? The day before I couldn't eat a straight up hamburger patty...or anything AT ALL for that matter and was sick as a dog. So the 40mg of pred just miraculously works after the heavy dose in the hospital did almost nothing? And it's been getting better too. He did a sig scope yesterday and sure I felt like crap after that, but still. What, this whole time I needed to be eating the worst food possible in existance?????
So now I'm really doubting starting this super expensive treatment, however I know it will come back. I just hate so much drug, and being so bound to it to keep me well. But what the heck? Is it placebo since they are so sure I will get better on the Remicade? I don't take it till tomorrow morning. I'm so stressed about all of it, especially now since I don't know if it's the right thing to do.
I have still had a few runs to the bathroom. But this is really freaking me out. I know last time I had a colonoscopy it cleaned me out and I was well the next day, but this was even before that point. And I do still have ulcers and they were bleeding after he irritated them with the scope. But I have been more well since I started getting help Tuesday night than I have been in 5 months!!!!
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on.
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice