I am just fine according to my docs and test (cynicism abounds)

So....

I went to see a rheumatologist becasue in this latest flare, I had days I could barely walk.  When the gut settled down, so did the pain.  Knuckles and wrists still hurt a lot--knees and back some times too.  But I am not finding it hard to walk.  Well my xrays, DNA and blood work show it is NOT CD related and I just have OA of the knee and lower back.  Use the NSaid gel and you are fine was the message left by the rheumy office.

I saw my GI yesterday.  Told him the tags were tearing still, painful and I had a really horrid odor in the bathroom and the drainage.  Hey he had the brilliant idea of getting me tested for c-diff (I have been asking since November for that test),  Well I had the first fully formed BM in a long time yesterday.  Lab says I can't have c-diff because it was formed and they did not run the test.  Oh and those months of nausea---must be that post nasal drip.  GP says my test results all show no inflammation.  Maybe you should try this other probiotic (because he obviously did not believe me that Align made me more sick) oh and take some fiber.  Just use the lidocaine on the tags and you're fine. 

After many years of hearing many of you say you felt like crud but nothing was being done...I now really get it.  I am done with doc appointments and tests.  I don't plan on going back to the rheumatologist ever.  I am supposed to go back to my GP in December, but already planning on cancelling it.  They all show I am just fine.  This joint pain and gut issue is just in my head.  I don't need to lose precious vacation days to be told I am fine despite feeling like crap.  If nothing can be done...then good I'll eat whatever doesn't make me puke and I'll go back to dancing despite not being able to walk the next day.  I may as well enjoy the suffering

I'm sorry Habs!!!! I know exactly how you feel, that's why I find them a waste of time...I'd get my hopes up every time I went to an appointment that they'd finally be able to help me and was disappointed most every time...the only good advice I got from my GI the first time I saw him (GI#4) was fibre supplements, and they did help a lot, but not enough to make a difference in my daily living (still too much frequency and urgency issues)...I always assumed that if I could just get my stools formed again, that everything else would fall into place...boy was I wrong, at least in my case it wasn't enough to aid with urgency, only helped a bit with frequency (and I appreciate any help but at the same time, if it's not enough to improve my quality of life then big whoop right).

I've never been one to run to the doc over every thing either, and once I became sick, that still didn't change much, at first I went a lot because I was freaked out about this disease, but once I realized how useless they all really are I fell back into my old ways and don't see them as often as they would like me to...all I am is more money in their pocket, I'd be fine with that if they could actually help me, instead they just waste my time for the most part.

I hope you find relief soon, I wish we could all just be cured of this crap already.

When I had c.diff last time, I was also having formed stools for the most part, mixed with times with loose stools. I was sick for several months until I was so weak and nauseous that I couldn't even eat at all. My doc finally hospitalized me thinking it was a Crohn's flare and we finally found the c.diff...so I agree with PV.
I don't blame you for being frustrated, but you know something is wrong. Take a break from the docs, re-group and then go back to your GI when you are ready. My hospital lab won't run a c.diff test on formed stool, but your doc can override that and tell the lab to do it anyway....that means you have to get your doctor to do that though, which is no small task. Sorry you are going through all this!

Good god, it's disgusting when patients end up having to do the doctors' job for them. (Thinking of Ides' post.)

Habs - You sound demoralised and no wonder. I would take a break for a while (a few weeks or months, however long it takes to regroup and feel capable of facing the fun merry-go-round of appointments and tests again). It may even be worth changing hospital: I stalked out of my previous hospital in high dudgeon, furious and upset for various reasons. Situation was not the same as yours, but I had a similar feeling of not being taken seriously at all, of being stuck with pain and suffering.

When I stalked out, I planned to stay away from hospitals and doctors, I never wanted to see another doctor ever again. But over the next few months, I continued to deteriorate and eventually I relented. Got my GP to refer me to another hospital; it was in a crap location, so (misguidedly) I just thought the hospital would be crap too. At the first appointment, told the GI point blank nothing had ever worked and nothing ever would work. He looked a bit taken aback, must have formed the opinion I was clinically depressed then and there, then uttered some confident words about Remicade which I didn't believe.

To be fair, that 'crap' hospital turned out to be the best one for IBD that I've been to (in theory, my first hospital was the best one for IBD, but I found it crap when I was there, awful place). So, er... the point of this ramblefest? Not a lot :-/ Just basically trying to say a fresh start with a different set of doctors can be worth it.

Re joint pain: have you ever tried Methotrexate? It's used for both RA and Crohn's. Seems to me like it might be worth a go, and if it helped the gut issues as well, even better. Only thing I would say is, if you are already prone to nausea, I would stay away from oral MTX. Apparently that has far worse nausea as a side-effect than intravenous MTX. I took MTX by injection and only had very fleeting nausea which soon passed. (Didn't have joint pain, so I can't report on whether it helped with that or not, unfortunately.)

I was wondering about the DNA result as well. I'm no expert but that just sounds a bit dodgy. There's no reliable genetic test for Crohn's that I've heard of. Didn't even think doctors went in for it.

Blood tests are essentially meaningless if you are one of the people whose inflammatory markers don't rise.

If those are the only tests you've had, then that's definitely not enough to conclude you're 'fine'. There's the faecal calprotectin stool test (usually pretty accurate for gut inflammation), colonoscopy, CT or MRI scan, etc.

Anyway, I'm really tired so I'm gonna be off to bed, but sorry you are going through this... :-/