I'll add: I have a high grade partial obstruction at my anastomosis from the 1978 resection. My Crohn's first occured in the mid-ileum, not at the TI/ICV are that is so common for it to first strike. I had a resection of 18" of the mid-ileum at Mayo Clinic in MN. I then enjoyed a 20 year remission. Symptoms began again in 1998. In late 1999 I returned to Mayo and SBFT confirmed inflammation and the high grade obstruction at the anastomosis AND in a new area near the ICV. The locals couldn't find the inflammation until 2003.
I have pushed for an insisted upon the nuclear White Blood Cell scan. They were using the Ceretec WBC scan, now I more often see it referred to as the Indium WBC scan. Whatever, I was the FIRST one in this area to have the Ceretec WBC scan for Crohn's disease in the small intestine. This test, like the fecal calprotectin test, can NOT indicate WHAT is CAUSING the inflammation BUT it does pin point WHERE in the small intestine the inflammation is located. There was a Dr Martin Charron who was having good success using the Ceretec WBC scan for screening pediatrics patients for IBD to avoid unnecessary colonoscopies. This was in Pittsburgh, PA, I think at a children's hospital if the dim recesses of my mind are kicking out the right info.
It is a nice EASY on the patient test. Unless things have changed some, they draw 50 ccs of blood via an IV butterfly type set, send the blood to the lab, the lab separates the WBC, adds a "marker", mixes well and returns the "marked" WBC cells back to radiology where they are injected back into the patient via that butterfly set. They then take films at various time sequences. You have to keep emptying your bladder before each film. The WBC cells flow to the areas of inflammation and clump there and thus the inflamed area(s) light up like a Christmas Tree on the films.
Again, this was a test I insisted on when my mild symptoms were scuffed off. But, the WBC scan which I don't bother w/anymore and the fecal calprotectin test are what spur me and are finally able to convince my gastro to adjust my medications accordingly. So far it has saved me from a second resection that Mayo has been suggesting since 1999. According to my recent (April 2008) CT Enterography at Mayo tho my "borrowed time" has finally DRASTICALLY shortened. BUT I've been pretty much symptom free again since late May so I'm just playing it by ear and won't be surprised if I end up at Mayo before the end of this year for the resection. *sigh* Meanwhile the Imuran AND Pentasa (I'm one of the fortunate ones, Pentasa DOES work for) is buying me that time so far and things are pretty quiet again. knock, Knock, KNOCK.
I've got it all worked out w/my family doctor and will inform my gastro when I see her next week. I promised I would NOT wait as long as I did for my first surgery, nor push my luck that far again before heading back to Mayo for the surgery. BUT I will NOT agree to surgery here - SO - IF I misjudge and do run into problems bad enough to send me to ER, he will order me admitted, put on IVs and an NG tube to empty my gut and stablize me and then ship me off to Mayo. He says they can fly me. I say I'm not paying for a medical flight! Its only a 12 hour drive to Mayo from here and there are commercial flights. Empty me out and stabilize me and I can just report to the ER at St Mary's in Rochester and be admitted and have the resection w/in 2 days maximum.
That's my plan and I'm sticking to it. knock, Knock, KNOCK (God looks after fools and he has taken EXCELLENT care of me all my life).
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Post Edited (CrohnieToo) : 6/26/2008 3:54:58 AM (GMT-6)