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Crohn's Disease Forum » Support Forum » Undiagnosed Club » All Tests are Negative, Still Unwell


06-09-2013, 08:43 PM   #1
Gculk
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All Tests are Negative, Still Unwell

Basically the title says it all.

I've had LRQ pain, off and on, for about 4 years now. Some mouth ulcers when flare ups start. I've had blood and mucus in almost every flare up for the last 2-3 years. Pain is sharp, or burning, with occasional cramping. LRQ is always tender when I'm flared up.

Blood is not bright red, but is not significantly digested. Blood is almost always preceded by LRQ cramping.

Tests/results:

Ct-Scan looking for appendicitis - Nothing abnormal, terminal ileum unclear
Sigmoidoscopy - Clear
Bloods - ESR/CRP/CBC/TTG/ANA - always normal, once showed borderline anemia, once slightly raised white blood cells.
H-Pylori - Negative
Small Bowel Followthrough - Clear, except terminal ileum was unclear 'possibly underdistended' was the comment (note I had terrible LRQ cramping doing the SBFT).
Colonoscopy - Nothing except some 'benign lymphoid hyperplasia' of the terminal ileum

So, basically, who's got an idea of what's on the go? GI thinks IBS, and says fibre will help. I started fibre (raisin bran) and that day had intense cramps and more blood than normal. Powered through for a week or two, still having cramps and occasional blood.

I'm going for another test - MRI for meckle's diverticulum. Would that specific MRI test pick up inflammation if it is present or is it specifically for that disorder?

Thanks,
Nathan
06-09-2013, 09:36 PM   #2
nogutsnoglory
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What kind of MRI are you having? Abdomen and pelvis with and without contrast? It is very effective for picking up inflammation.
06-10-2013, 05:26 AM   #3
Gculk
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What kind of MRI are you having? Abdomen and pelvis with and without contrast? It is very effective for picking up inflammation.
Nope, the MRI for Meckle's diverticulum, Technetium 99 as a marker to find stomach tissue. Just wondering if it will incidentally pick up inflammation as well?
06-12-2013, 08:05 AM   #4
UnXmas
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Hi, I don't have any useful ideas, but I did want to say I sympathise. I was undiagnosed for over a decade, and I know how frustrating it can be when you ironically end up wanting positive test results, and doctors doubt the severity of your illness because your tests are normal.

Have you had tests done during the times when your pain was present? That could make a difference, especially with blood tests that look for signs of inflammation or infection.

Fibre wouldn't necessarily make IBS better or worse - do you have diarrhoea or constipation? Fibre can make both constipation and diarrhoea worse or better, so I'm not sure why your GI would think it would help - the only way to find out is for each individual to try it. I think IBS is mostly a diagnosis doctors fall back on when they don't know what's wrong and assume it's nothing serious.

Blood is supposed to be one of the signs that an illness is not IBS, though, so did your GI have an explanation for that? Have you had stool tests to confirm to the GI that blood is present?
06-12-2013, 08:26 AM   #5
nogutsnoglory
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I'm sorry I'm not familiar with that but you should ask the doctor who ordered the exam.
06-15-2013, 09:37 AM   #6
Gculk
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UnXmas:

The blood tests, Ct, and small bowel followthrough were when I was hurting, but the colonoscopy was when I was pretty decent.

I don't really have diarrheah or constipation that frequenly. Used to have constipation fairly frequently, but not thaaat bad. It's mostly just pain, and bleeding. Some other symptoms like nausea, fatigue and joint pain too, but mostly the gut pain and occasional bleeding.

Nogutsnoglory: Alright, thanks - will do.
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