Going in circles

[musicalwiz]

Hi i have been having the hardest time with getting an actual diagnosis. Every time it seems like were getting somewhere, It turns around and goes back to square one. MY symptoms include rectal bleeding( the reason for my initial visit with my GI), abdominal pain that is specific to the right lower quadrant, cramping, diarrhea, constipation, mouth sores, and chronic fatigue. My symptoms are on and off and can go months without showing. I have been undiagnosed for 2 and a half years now, and my SED Rate, CRP, and Il-6 have been constantly high since first visit with my GI and has either gotten higher when I feel worse or stayed the same with each new test. I have gotten 3 MRES and the first two have shown mild thickening and hyperenhancement of the Terminal Ileum and the official notes were- possibility of early crohns not excluded and likely. I have had two endoscopys and one colonoscopy 2 and a half years ago which came back normal, and have had two capsules which showed the lymph nodes in my TI were all significantly enlarged, but no inflammation. All of my calprotectin tests came back normal, slightly getting elevated over time but still within normal range. My doctor put me on steroids in the beginning of the year which really helped my symptoms for a while. But then they came back gradually and when I went for my third MRE everything came back as normal even though all my inflammatory markers were still high. This is basically the same process that keeps repeating itself, and it feels like I keep going back in circles because everything is sooo vague. Now im at a loss of what to do and any advice on how to proceed would be appreciated. Thank you!

 

[Scipio]

I can see why you are going in circles. You have some findings that add up to likely not Crohn's and another set of findings that say probably mild Crohn's, but you have no one finding that cinches the deal.

One question is what color is the rectal bleeding? Bright red = coming from colon or rectum - maybe IBD but also possibly a bleeding hemorrhoid, Dark red = bleeding farther upstream. Possibly IBD and may explain low fecal calprotectin if located far upstream. Unlikely to a hemorrhoid.

I don't usually recommend tests that are not FDA-approved, but for stubborn cases such as this you may wish to consider having a Prometheus IBD sgi Diagnostic blood test run. It combines several serologic, genetic, and inflammation markers to estimate a probability that the patient has IBD. As I said, not FDA-approved but it is based on reputable published science.

 

[my little penguin]

Have you seen a rheumatologist or immunologist?
Sometimes sub clinical Gi inflammation can be going on in the background while a different disease is raising your inflammation markers
Similar to how Crohn’s can cause eye inflammation, joint inflammation and skin issues .
Hope you get answers

a dermatologist can biopsy a fresh mouth ulcer .
If you had scans or scopes within 6 weeks after stoping steriods odds are the scope would be clean or healed .

other auto inflammatory disease can cause mouth ulcers and GI problems
Particularly neutrophilic diseases
There is a large spectrum of them
Bechets is one including intestinal bechets
Sweets syndrome
My point is alot of things can cause issues other than crohns