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Crohn's Disease
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Posted 11/3/2007 1:11 AM (GMT 0)
Has anyone been diagnosed with inflammatory bowel but had a normal endoscopy/colonoscopy?  My thinking here is there must been some sort of inflammation somewhere for me to respond to steroids but not IBS meds.  I don't want to go back on steroids but would like for the doc to consider some sort of antiinflammatory med as a trial.  Like sulfasalazine to replace the methotrexate that I am already on for RA... But with normal results I don't think he will even consider it.  To me it is surprising anyway that things were normal with the longevity of the symptoms and the fistula.  Also since he said everything was normal should I even go ahead with the SBFT and CT scan??  I am not made out of money here and cannot afford it if it really isn't necessary.

Theresa

Posted 11/3/2007 1:46 AM (GMT 0)
yes, twice.  My first colonscopy showed crohn's in my ileum.  The past two scopes (one each year) have showed normal, althought my endoscopies showed inflammation.  I had severe symptoms during both of the last two scopes so i was really confused.  I'm taking it, that you have a fistula from your post.  i too have that problem.  My doctor told me i must have ibs on top of crohn's to explain why i had symptoms but nothing showed up.  But i have read other posts talking about people w/normal scope and have say camera pill done and stuff show up higher up in the intestines that the scope can't reach.  I'm figuring that may be the case for me.  As far as the sbft, i had that test done one week after first colonscopy (which did have the crohn's show up)  and it showed nothing.  the ct scan did show my crohn's on another incident, which the reason i had the x-ray done had nothing to do with the crohn's but it showed up then.  It seems to be a hit or miss for me one test shows, next one doesn't.  maybe that's the case for you.  anyway my doc said getting a fistula alone shows signs of active crohn's.  Whether you want to get the tests done or not is up to you as far as the money situation goes but if your doc is willing to treat you based on symptoms alone then are the extra tests really necessary?  Now if you weren't getting treated properly then I would get them done.  Good Luck!! 

Posted 11/3/2007 4:14 PM (GMT 0)
I thought methotrexate could be used for CD?

yes, I have been diagnosed with nonspecific IBD based on symptoms and response to a trial of Pentasa and I don't even have RA although I do have, and have had in the past, rheumatological symptoms. I say that because I think having RA puts you at additional risk, or that it makes it more likely you have gut inflammation? Many of these diseases overlap.

I have had 3 normal colonosocpies, a normal SBFT, a normal CT, normal rectal biopsies, normal colon biopsies from 1998 to the present. I continued to have symptoms that got progressively worse over the years (although there were also some periods of improvement in the early years) The IBS meds did nothing. I didn't have cramping, just pain that felt like broken glass. I eventually got gi symptoms but nothing major. I had an inflammatory arthritis of my knee. The last gi I went to suggested a trial of sulfasalazine and then changed his mind. So, when I went to the new gi I just told him that the last gi doctor was going to do a trial of medication. Would there be anything dangerous about that and would you be willing to try that? He said sure, that would be useful. He decided to do that instead of thel camera pill. He said he'd have more faith in the trial of medication.
Posted 11/3/2007 5:05 PM (GMT 0)
So, it wouldn't be out of place to suggest an antiinflammatory for the gut commonly used for inflammatory bowel but also will treat the RA? Even though the endo/colo was normal??? I really cannot afford the other tests which i would assume would be normal as well.

Theresa
Posted 11/3/2007 10:04 PM (GMT 0)
Would sulfasalazine do anything for RA?  I'm only familiar with Pentasa, which is in the same family of meds, and that works as a topical treatment directly on the intestines.  I notice you take Advil.  NSAIDs can cause ulcers and bleeding and worsen IBD symptoms.  I would talk to your doctor about other pain meds.
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