A few questions about getting diagnosed.

[community]

Hello...I lately have suspected that I might have Crohn's but I need your help on a few issues....I will be seeing a GI specialist soon.

1) I have heard that there is a part of the small intestine that the scopes do not get to. So how would I get diagnosed if there is Crohn's there? I have done the scopes a few months ago and they didn't find anything...so what would you suggest as another test they could do for me?

2) Are there people who have Crohn's but do not get diarrhea or blood in their stools? What would their other symptoms usually be? I get these flare ups that last about a week where I feel an intense amount of malaise/weakness/pallor and some nausea and lack of appetite. I will also have some moderate stomach bloating/discomfort. I don't really feel like this is IBS because my flare ups feel very intense. I have also lost weight which isn't an IBS symptom.

3) Is Crohn's usually only diagnosable if a person is in a flare up? I had a flare up over a week ago and I am gradually feeling better so I don't know if it's diagnosable right now.

Thanks for your help

 

[archie]

Hiya and welcome, crohns diagnosis can take a while some of the tests can come back conclusive of crohns and many tests can come back negative although it's still not ruled out, there is not one test that is used it is usually a string of tests. It also depends on where the crohns is located. If I were you I would get blood tests to determine if you have raised inflammation in the body it can also show if you have any deficiencies. A small bowel series or CT scan will also be useful.

 

[sfoster105]

If this helps:
They found my Crohn's during a catscan and confirmed it with a specail blood test. A colonoscopy confirmed that my large bowel also had inflammation. The small bowel was much worse, they saw that on the catscan. As soon as you see a specailist they should be able to help you, Also I am one of the few that does not have diarrea, thank GOD!! I had a large uncomfortable lump on my lower right abdomen. Some minor hemorroids and bad gas pains, as well as once a week fevers and general not feeling well were my symptoms. I took 5 weeks of prednisone and started Humira and I feel a lot better!

 

[StarGirrrrl]

Welcome to the Undiagnosed forum

Both scopes only reach a tiny fraction of the small bowel. A CT scan and small bowel follow through (barium meal) can help in looking at the small bowel. A Pill Cam (capsule endoscopy) visualises the entire small bowel and so is a very good test, but it can be hard to get. Some on here had 100% normal other tests, but the Pill Cam finally found out the problem.

Some people get a dx with one or two tests, for others it is a very long process.

 

[community]

Thanks for the replies so far guys.

For blood tests looking at inflammation, does that only work if a person is in an intense flare up?
Also I'm wondering if MRI's work in diagnosing since it doesn't use radiation...although maybe I'm just paranoid about that.

 

[StarGirrrrl]

MRI's are actually alot more in-depth than a CT scan I had my shoulder done and the detail is simply amazing!

 

[Mayflower537]

I remember reading a couple of people's experiences on here who were diagnosed with MRI. If I had to have another scan abdominally I'd ask for the MRI as I don't like all the radiation from CT scans either. I'm betting that the insurance would balk at it tho, b/c I think MRIs are more expensive than CT scans. I see you're in Canada. Maybe that's a non-issue for you.

 

[community]

Thanks

So do you guys know if a person can only be diagnosed while they are at the worst of their flare up?

 

[StarGirrrrl]

How long is a piece of string lol?

It varies, it really does, there is no easy answer. Some get a diagnosis when they are having few if any symptoms. Others have raging problems and it takes years to show on tests. Some fall inbetween!