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Crohn's Disease
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Posted 8/14/2010 5:02 PM (GMT 0)
Hi everyone, its been a very long time since I've been here. I had surgery for Crohns in 1997 and have had no Crohns related trouble since until recently. Went to the doctor this past week and had my first colonoscopy in 9 years thankfully. Good news for the most part, no signs of Crohns that he could see. I did however get the IBS attached to the Crohns, but hopefully that can be handled easy enough.

I have to go have an IBD Serology 7 test done on Tuesday to see if there are any signs that the Crohns is even there. My question is this: If I had surgery in 1997 because of fistula (and there was a lot of them) and the fact that my small intestine at the terminal ileum had narrowed so much that food couldn't pass through, the Crohns couldn't just go away could it? I'm really confused that if this test comes back negative how can he say I didn't have the crohns with all the trouble I had. IBS doesn't cause fistulas, narrowing, fever, or weight loss like I had.

Is there anyone out there like me that has Crohns and have been in remission for a long time like me? I have been in remission for 13 years now and I know he's thinking that this is a long time to have no symptoms. This coming test has got me really upset cause I know it was Crohns before and so does the doctor, but what if this test shows nothing? Don't get me wrong, I would be grateful to hear that it's not Crohns and that I'll never have to go through what I did that one year. Just don't wanna let my guard down and get taken by surprise when it decides to come back.

Would like to know if anyone has had this IBD Serology 7 test after a long remission and what the results were. Is it possible to be in a remission this long? And can you have IBD as well as IBS? Sorry this is so long, but thanks for any help I can get.
Posted 8/14/2010 5:16 PM (GMT 0)
Hey Crohniegurl97 when you were originally diagnosed were you diagnosed using biopsies? If so, then you have Crohns. There is NO cure for Crohns, once you got it, you have it for life.

I once enjoyed a nearly 20 year remission. My mistake was not staying on some type of maintenance med, as my remission ended with an emergency resection. So yes folks can have long remissions, and it sounds like you have been a little luckier too. By the way, since my resections I now have IBS too. My GI calls them mechanical problems. In other words too much stress, the wrong food can cause me to have a few bad days every so often. So you are not alone. And NO, IBS does not cause fistulas or narrowing. I am pretty sure you have Crohns. I have never done the IBD Serology 7 test.

Hugs
Gail*Nanners*
Posted 8/14/2010 5:23 PM (GMT 0)
Yes Nanners, I was diagnosed with biopsies. Thanks for your help. I do consider myself lucky for being able to enjoy a long remission because I know how bad it is and what all I'll have to go through when it returns. I know I do have Crohns, this test just has me upset.

Thanks again,
:)Sharon
Posted 8/14/2010 5:32 PM (GMT 0)
Well let him do the dumb test if for no other reason than to prove you do have the disease. My biggest suggestion though is to ALWAYS stay on your meds, so you can avoid future flares or at least there not as severe. Hugs!
Posted 8/14/2010 10:09 PM (GMT 0)
Sharon, if you're American the doctor might just be trying to cover you in case you have any future troubles. Maybe the insurance companies won't like covering you for your gastro doc visits if they can't prove (through a more modern test) that you have Crohn's?

Just an idea... Or maybe your doc finds you intriguing, and wants to do a bit of unofficial research to see if there's anything special in your test results, that might give him / her some clue as to why you've had such an unusually long remission?
Posted 8/14/2010 11:45 PM (GMT 0)
Thanks ivy6, I hadn't thought of either of those scenerios so that makes me feel better. I was just having a hard time trying to understand why there would be any question as to whether it was Crohn's when I had multiple fistulas, a mass that was sore to the touch on my right side and my terminal ileum was so narrow that food wouldn't pass which was causing me MAJOR abdominal pain. Not to mention the fact that colonoscopy with biopsy confirmed it as well as small bowel follow-thru showing the fistulas. I had such a rough year the year I was diagnosed that ended in a resection and although I would like NOT to have this dreaded disease I don't want to think I went through that year without a name for what it was. I hope that by my being in remission that it doesn't cause the test to show negative when the Crohns is actually there.

Thanks to you & Nanners for your response. All this can be SO frustrating!!!

:)Sharon
Posted 8/17/2010 9:32 PM (GMT 0)
Well, had the IBD Serology 7 test this morning. Anxious to see what it tells me. Also had an ultrasound on my liver. One question...my liver enzymes have always been at least slightly elevated. Can't Crohns cause this? Dr. has never related that to the disease itself and I have always wondered why. Even if it's only fatty liver, all I've read about that, Crohns is also a factor there too. I have put on a few pounds and I know that is more than likely what the problem is, but all the same I have read that Crohns can be a culprit with it also. Just trying to figure out some answers. Thanks guys!
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