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Hello again

I was here a couple years ago but let my membership lapse after ages of conflicting diagnosis.

Except for d and bleeding( really bad the last time, lasted three weeks and made me anemic, including while I was on an Alaska cruise!) all of my symptoms are extra intestinal ( joint pain, vasculitis, episcleritis) and the only lesions I've ever had ( so far) were in my mouth. After several really bad doctor experiences I finally found a great rheum in the same practice with my new gi who has me on azathioprene, pred,plaquenil and lialda ( along with my gi doc) and things have settled down a fair amount. It's been frustrating not having an actual dx, but the docs have all said it looks just like IBD just without the positive scopes. My dx code has been for uctd which irks me a little but hey as long as I'm getting treated ok.

I had been working really hard to get off the pred and was down to 4 mg when I got slammed with a bad flare about three weeks ago. Thing is, it started with a cough that led to a cracked rib ( urgent care said rb sprain, ER visit, said pleurisy, pulm says fracture) and then hit my joints, etc.


The cough has been chronic for months and waxes and wanes At the urging of my rheum and pcp I saw the pulmonologist, fully expecting to hear it was allergies or something, and after doing a bunch of tests he said he is positive I have "atypical crohn's" where the extra intestinal stuff comes first and that I have pulmonary complications. Of corse the treatment is not more cowbell, it's more pred which I hate!!!!!

He is also consulting with my rheum to have my other immunosuppressents kicked up or switched up.

I guess all this is a long way to say hi again, and I have no idea if I really fit in here, but I sure don't know where else to go.

Sharon
 

ameslouise

Moderator
Hi Sharon and welcome!

I laughed at your cowbell comment! Sorry you have to be on more pred, but it does help do the trick quickly and has saved many of us on many occassions!

It's odd that you have all the other extra-intestinal symptoms first. Do you not have any GI symptoms?

Where are you located? Just curious.

Hope your flare quiets down quickly and your med cocktail continues to work for you.

- Amy
 
Hi, Amy. I have diahrrhea and on/ off rectal bleeding ( sometimes pretty severe) but rarely have pain other than cramping with the D ( a few time I've had some bad pain but thats very rare).

I just hate that I've worked so hard to get off the pred and it makes me so fat! That's another odd thing, when I first got sick I GAINED about 30 lbs in a month! It's crept up and up since I started the pred about two years ago. I know it's vain but I hate it!

I live in Maryland, just outside of DC. I will update my profile shortly!
 

xJillx

Your Story Forum Monitor
Hi Sharon and welcome! Like, Amy, I am curious as to where you Crohn's is located. Was any inflammation found during a colonoscopy or scope? I imagine there would have been being that your GI has started treatment even without positive biopsies.

And I am so sorry you flared again just as you were getting off the pred! I hope you can successfully taper off it again soon once you are feeling better.
 
Jill that's kind of the question to me. I have oral lesions and I've had some mild inflammation on biopsy from a colonoscopy, but no lesions during scopes. I do have diarrhea, rectal bleeding/pain, migrating joint pain, vasculitis, lung inflammation, episcleritis , high c-reactive protein/sed, and something I'm sure I'm forgetting. Ayiii!

First couple rheums patted me on the head after a few tests and mumbled stuff about where I was in my cycle, etc. Second rheum was sure it was an IBD but the first GI poopoo'd it(ha!), next one kept saying maybe it was ibs, take probiotics, take xifaxin (in case it was sibo) I went to an appt with severe rectal bleeding and he didn't even do an exam. By that time I had a new rheum who is wonderful and treating everything as a connective tissue disease and sjogrens ( hence the imuran, pred, and plaquenil) Anyway, she did my labs during that bleeding, found I was pretty anemic and referred me to a new GI in her practice.

Third was the charm. She did all the scopes, didn't find anything new to write home about but also felt strongly that everything looked like an ibd and started me on lialda. It hasn't fixed everything, but now I'm going maybe 5 times a day instead of 15 or so.

The lung stuff is interesting. I've had a small chronic cough for over a year and recently started getting big infections ( pneumonia, recurring bronchitis) and a couple of weeks ago ended up in the er with severe flank pain that they said was pleurisy, but the pulmonary thinks was more likely a fracture.

Sorry so long, I'm sure I've forgotten something!
 
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Ha! Just got off the phone with my rheum, the pulm hadn't spoken with her yet but she said that (again) most of what I have looks like ibd but some looks like other things as well and I sort of have my own disease at which point I said " I want to be on that mystery diagnosis show so one of you better hop to it!". ( we have a friendly relationship). At any rate she's grabbing the pulm now to talk to him, I have no wiggle room left on the imuran and she's not sure about an anti-tnf without a definite definite dx.
 
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