Scope & VCE Results - Diagnosis change

I should add that he made the suggestion of a Rheum because he noted that my ESR and CRP were elevated and thus indicated inflammation somewhere...just apparently not in my colon -_-

I'm really sorry that you're body isn't agreeing with your doctor's new "un-diagnosis". It would be great if, whenever a doctor changes his mind and declares you disease-free, that the ol' body would get with the program and stop hurting and making us miserable. But I gather that he's still a bit on the fence and thinking that it may be a remissioin.

I would be confused, annoyed, and a bit ticked off too. Like you said, you have inflammation from something and you certainly don't feel well. I know I'm not saying anything helpful, but I do understand what you're saying and feeling.

@minnietoty - he did take a ton of biopsies he said but none of them showed chronicity. He said any inflammation marked by the person reviewing the slides was likely from the prep but because he lead them by saying he was looking for small bowl Crohns, they erred on the side of caution and noted it.

My scope in Oct 2015 showed very mild inflammation in biopsy in the TI - MRE in late November 2015 showed (and this is directly from the report) "mild wall thickening and enhancement of the terminal ileum, which may correspond to a short segment of active Crohn's disease. No fistulous disease or abscess" and the only other finding on this report was a 2.2cm cyst in my left ovary.

I had been on Entocort for almost a month by the point of the MRE - with complete resolution of symptoms including joint pain. This was at a different hosptal/IBD center than the recent doc whom I started seeing in June.

Thanks @JaSanne - I mean, I'm willing to accept that it's not Crohns but he is not removing the diagnosis from my medical record. He flat out said he wasn't - my guess is because of liability. If there ever IS really truly Crohns, he can say it was marked in my record all along.

Last October by ESR was only slightly elevated at 17 but when new doc did it in June, it was something like close to 70 which startled him and set him wanted another Colonoscopy. Also CRP was elevated but I don't remember what it was - along with white blood cells.

@NCOT - Original diagnosis was murky - scope did correspond to inflammatory markers in blood or my symptoms being so severe. The hunt was so strong because of a family history (my youngest brother has Crohns and my mom colitis). I always thought IBS responded to an increase in fiber but when I eat high fiber foods (the two that stand out the most are any sort of salad or kale/brussel sprouts/etc and chick peas/falafel) I get pain in the right side and an increase in frequency and urgency in my bowel movements along with being able to see all that lovely salad in the bowl.

Honestly, I think at this point, I'm tired mostly between school/work and the not knowing. I handled being tired and stressed a lot more before I started seeing a doctor I think because I just pretended I didn't have a problem, but then I started seeing doctors and the lack of answers and all the invasive stuff has frustrated me. I don't think, ultimately, that I am depressed, but I'd be lying if I said I felt 100% like myself. I just can't go all day anymore - we recently went to Philadelphia to visit an aunt of mine and the Friday we got in, we walked all over and it was pretty low key, no hills, nothing strenuous, and by the time we got back to her place and went to bed, I thought I was going to die and my ankles would fall off. I spent the entire next day recovering (by sitting on my butt at a baseball game haha).

Recently I tried to start running with my husband but I had to run home twice for fear of not making it to the bathroom in time and again, with my ankles and knees.

So this is why I am hoping a Rheumatologist can get me some answers....hopefully? Like I said above, I'm willing to accept it if he says "You do not have Crohns" but he hasn't said that. I even asked, what is the most likely statistical probability: that I never had it or that I am in remission that's undetectable on biopsy. And he wouldn't answer me - plus I still have (though not as bad as it has been - I've even had a good number of well formed bowel movements which is like, a magical experience for me) frequency and urgency and joint pain, etc. etc.

But my mom, on top of her colitis, has Grave's Disease - hypoactive thyroid. I had mine checked several years ago but there's always a chance. I just have to start over.

I've got some other symptoms that don't add up either: I've had chronic idiopathic urticaria since I was 11, I have eczema and rosacia, since taking the entocort I scar/don't heal as quickly (which I had hoped would wear off but it's been almost 6 months!), and every few months I get a swollen lymph node on my left side so painful that I have an earache.

But all of that is in my notes for a Rheumatologist. Started the probiotic yesterday though so maybe it'll make it less painful to eat high fiber foods. I ate a ton of salad for lunch and dinner today to see if I am crazy or if it really does cause me pain....that may have been misguided

But I appreciate all your comments! I'm feeling very in limbo here!

Oh no, it's fine - I think the liklihood of me having had crohns and being in magical remission but suffering from IBS & joint pain is unlikely. I wish he had just said "You do not have Crohns."

I did some reading on soluable fiber while confined to the abode this morning. I am going to intentionally increase my S fiber intake though in eating less insolvable fiber I think I have been unintentionally which may be why my BMs have been on average bulkier and less urgent. Am also looking into Low FODMAP.

I'm on my way to new PCP who is really a nurse practitioner, now, so hoping to make Rheum appointment today.

My CRP was also elevated. I saw PCP today and she - rightfully - wants to see my records from GI first. She said even if it was IBS she wasn't sure why GI adding recommend one of the IBS meds out right now (he just told me to take Imodium which just makes me feel bloated and in pain in a different way).

So she ordered a full auto-immune panel and asked a lot of questions about my joint pain and symptoms. I'm optimistic, she was really fantastic. The problem is, solo, all these and the blood work with clear scopes, are too vague. So more blood work.

Yeah, faecal calprotectin test is a good idea.

But if there's no visible or microscopic inflammation in the entire bowel, I'm not sure how the GI symptoms can be put down to IBD. Particularly as there doesn't appear to be any sign of chronic, i.e. long-standing inflammation in the biopsies either. I'm not convinced either way that this is (or isn't) Crohn's; I think only more time will tell. If it's Crohn's it will definitely out itself eventually.

Calprotectin is a bit different to the usual stool tests. It's not a pathogen, but a protein which becomes elevated whenever there's intestinal inflammation. My last few calprotectin results have been sky high, for whatever reason, so my GI has ordered a pillcam. None of my other inflammatory markers, while raised, are nearly as high as my calprotectin though, so I dunno.

Anyway, if you have a positive faecal calprotectin test, that's considered to indicate IBD (or another source of intestinal inflammation). The calprotectin isn't raised in IBS alone.