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Crohn's Disease
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Posted 8/6/2013 9:55 PM (GMT 0)
Hi all! I have been using this forum for a while now to help answer questions I had. Thank you!! I am in the "testing" phase for crohn's but have two fistula with surgery scheduled for seton placement next Monday. As of this morning, I was feeling much more confident that I didn't have crohn's based on CT enterography that didn't show any inflammation and a "clear" colonoscopy. The colorectal surgeon still planned to do biopsies next week as he explained these tests may not show the crohn's. My major symptoms of crohn's are really the fistula and just stomach bloat (i always thought everyone had this...no??) but I don't have chronic diarrhea. A few months back I had constipation where I thought I might have to call an ambulance for assistance 😳. Ha! The only other pain I have felt recently is lower back pain and achiness. Anyone else experience this with Crohn's? As I left the CR's office today, the GI office called and my Prometheus test indicated that I have Crohn's. strangely, it is somewhat of a relief but I am also feeling depressed and anxious. Have any of you received a false positive on the Prometheus? I also have a history of blood clots and migraines. Have any of you had these issues and could they be related to the crohn's? Your insight and support is greatly appreciated!
Posted 8/6/2013 10:04 PM (GMT 0)
Sorry you're going through this! The diagnosis of this disease has proven frustrating to all of us at this point I am sure... I have been advised by doctors not to put in too much trust to the Promethesus markers, however, this has been in reference to the fact that I DON'T have the markers. It has never been proven that you need to have the markers to have this disease. Unfortunately for you, in my research, if you do have them, it's pretty much a sure thing :( But again, no research about the ASCA markers has been done, so rely more on other testing that is more indicative of it.
Posted 8/6/2013 10:43 PM (GMT 0)
I have Crohns. And two fistulae. And lower back pain. Distended abdomen.

Never had it too bad with the D. But constipation and a fissure down there we're my first signs before I was diagnosed.
Posted 8/7/2013 11:40 AM (GMT 0)
I had similar symptoms to you before my diagnosis...I was intermittently constipated, bloating, some gut issues, alway had joint issues.  It was all written off as our family always had bad guts.  I did not have fistulas until more than 10 years after my diagnosis.  It sounds like you are in the CD club with your symptoms and the tests---it is very hard to get diagnosed because many tests show no inflammation or CD effects even when you are ill (I show nothing on my tests now but I know I have CD and am having a flare up).

Make sure you care for yourself with the setons in...I was lucky and mine was a more simple seton in a low risk place.  Take care and hope you well with the setons.

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