CT Scan suggesting Crohn's - What should I ask Dr?

[Briquewest]

Hi

I should preface this with the fact I do not yet have a diagnosis. In the first week of July I came down with a wicked virus or infectious something that caused severe nausea, frequent stool but no diarrhea, severe neck pain and headache, odd nervous system disturbances, fluid in my ears and pressure, inflammation in my sinuses, and some weight loss with a disturbed GI including upset stomach and an inability suddenly to belch. After 4 weeks of the illness with the other symptoms waxing and waning, I developed flank pain that is only on my right side and sometimes low by the pelvic bone. Sometimes it moves around to my back or below the ribcage.

I was given an US to rule out organ issues - all bloodwork came back before this - and it showed a large kidney stone on my left side. That didn't explain the right side pain, but led to a urologist who did a CT scan about 4 weeks ago. CT scan showed kidney stone small (yay) - but showed a couple inflamed lymph nodes in abdomen, some wall thickening in bowel, and a trace amount of free fluid in pelvic abdomen area. Urologist asked if I was ever diagnosed with Crohn's. I don't have the report so I don't have the details on where the bowel thickening is, and how large.

Saw GP a week later, explained that the imaging looked like an inflammation process, referred to a Gastro who I meet with today. Since mid-September the only symptoms that remain are the ear fluid pressure and tinnitus, and the right side abdominal pain. It's not double over debilitating, and I have even had some periods as long as 3-4 days without it at all - but it always comes back with the same intensity and lasts from as short as a day, to as long as a week or more. I am a 50yo male with a history of infrequent indigestion, but no digestive issues.

Would love to hear from any others that have a similar story (viral or post-viral induced symptoms), and any that can offer some advice on what are some good questions to ask at my appt, and what tests I should request.

Thanks for any feedback!

 

[ronroush7]

Welcome. I might ask about a colonoscopy /a mri. Let us know how you are.

 

[Briquewest]

Welcome. I might ask about a colonoscopy /a mri. Let us know how you are.

Hi - thanks for the reply. I figure a colonoscopy is on the menu since I had one at 40 and just turned 50 - so I think that was coming just because of time frame. I hadn't thought about an MRI though - I'll make sure to inquire!

Any particular blood tests that are the norm when looking into Crohn's?

 

[Lady Organic]

They probably checked everything that could be indicative of an inflammatory marker in your blood already, like C-reactive, Sedimentation rate, etc. But no inflammatory marker is specific to IBD and these marker are not always accurate for everyone.
Colonoscopy is the best exam to see what is going on in your colon. let us know whats coming up for you.
Wishing you well.

 

[Jabee]

I’m assuming they did blood work to rule out any bacterial infections too? It’s the fever and neck pain that has me thinking about various bacteria. Where are you located? Let us know what the GI says today.

 

[Briquewest]

I’m assuming they did blood work to rule out any bacterial infections too? It’s the fever and neck pain that has me thinking about various bacteria. Where are you located? Let us know what the GI says today.

Only bloodwork has been basic CBC and metabolic panels - everything has come back fine on that. The initial virus was pretty intense. Thought I had some sort of viral meningitis because of the brain fog and head symptoms. That has passed aside from the ear fluid and pressure that lingers. No more headaches or strange head stuff.

I live in Oregon. Oddly enough, my wife and several of her co-workers had almost identical symptoms at the same time sans the lingering abdominal pain, one was even diagnosed with VM- but all started out with severe nausea for a week, head and neck pain and ear dysfunction, gastro distress...etc.

I'll definitely update after the doctor visit today. Probably won't have much in the way of answers I assume.

 

[Jabee]

I know it isn’t very common in Oregon, but could you have been exposed to Lyme disease? I’m located in Massachusetts and got it in 2001. We didn’t have dogs at that point and not only did I never find a tick I also never got a rash. It was in my nervous system so my symptoms were all neurological. It was the headache, neck ache, and nervous system symptoms that made me think of it. Your GP could order a western blot test to check. Did you get checked for viral meningitis? It’s odd that people around you got it and you showed similar symptoms but didn’t have it. Although I honestly think medicine has more exceptions than rules! Hope your GI can help figure it out.

 

[Briquewest]

I know it isn’t very common in Oregon, but could you have been exposed to Lyme disease? I’m located in Massachusetts and got it in 2001. We didn’t have dogs at that point and not only did I never find a tick I also never got a rash. It was in my nervous system so my symptoms were all neurological. It was the headache, neck ache, and nervous system symptoms that made me think of it. Your GP could order a western blot test to check. Did you get checked for viral meningitis? It’s odd that people around you got it and you showed similar symptoms but didn’t have it. Although I honestly think medicine has more exceptions than rules! Hope your GI can help figure it out.

I don't think so on the Lyme. I was overloaded with work and not getting outside the city much, not sure where I would have gotten the tick from if I even had one.

Only one person that was associated was diagnosed with the VM - but that was only one that went for the spinal fluid tap. My doctor offered doing it, but he figured it if was VM than it would run it's course regardless. In hindsight maybe I should have considered it.

The Crohns discussion came about because the urologist and my GP said if I didn't have the recent Gastro illness they would diagnose that based on the CT alone - but we'll see what the GI doc says today.

 

[Jabee]

Well your CT definitely shows that some inflammatory or infectious process is affecting your intestines. Ongoing pain means “it’s” still active. Hopefully your GI will at least have some suggestions. It’s no fun being in pain.