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Wednesday really sucked

Ok, so I had been waiting for results of my last capsule endo and I finally got them Wednesday afternoon. I would have posted yesterday but I mentioned I had some serious computer issues but I digress.

Basically the study came back clean. No inflammation, no lesions/ulcers, no scar tissue, no stricturing. Nothing.

_Normally_ I as would most of us be jumping for joy. The problem is I still feel like crap and am having symptoms.

I missed a call from my GI yesterday evening but she gave me a direct number so I don't have to play phone tag. She mentioned the fact that the study was negative and that she was really baffled now. _Join the club_ ... She wants to discuss our next steps and plans. I had sent a rather lengthy email to her Tuesday night with ideas of what we can try and do. So I'm guessing we'll go over those.

I don't often cry. I just don't do it but after that phone call I basically lost it. I feel like the doctors I've dealt with over the past 2 years (this GI excluded) haven't taken me seriously until I get sick enough to be admitted to the hospital and that's just not right. So now I'm thinking great they _really_ won't take me seriously. I start wondering if my only option left is to basically let things go for now until it gets really bad again and based on previous experience it'll happen and then this doctor can figure it out. The other part of me thinks I don't and shouldn't have to get so sick to be taken seriously. It's just maddening.

I'm beginning to question the Crohns diagnosis, you hear these guys go back and forth so often you have to start to question it yourself. Ugh.

Anyways, needless to say I'm not doing well emotionally because I just don't know where to go next. I am placing calls to my PCP to see what we can do with the nutrition portion of the situation since that is more then likely a culprit with this massive exhaustion. I'm also going to go over everything that's gone on to see if yet another set of eye balls on the issue can come up with any new ideas or therapies. I honestly can't keep living like this. I'm also going to call the GI back to see what she has to say.

I'm fortunate to have a really good support group in place in you all, my friends and family otherwise I'd be in really bad shape methinks haha.
aw Drew :( so sorry. like you say, a test result like that should make you happy, but when you're feeling so poorly it just adds to the frustration!

can we do anything to help? i was wondering if it would be helpful for you to list all your symptoms in here.. maybe all of us could take a look and possibly someone might have some ideas...

failing that, i would look into changing GI if it's possible, maybe even consider seeing an alternative health specialist.

can't think of anything else :( just - we're here for you.

My Butt Hurts

Good idea Ding has there, list all of your symptoms so maybe we can see better what's going on with you. Though they seem to change from day to day.
Your GI is still fairly new to you, and she seems like she's really on your side, so maybe she will have a few ideas to try when you talk to her.
The Humira _was_ working for you a bit, but it was the side effects that drove you off of it. Maybe Cimzia or Remicade is worth a try? They might actually give you another clue into knowing if this IS really Crohn's or not - depending on what you body does on them.
Glad we're here for you.
Drew - just wanted to say I'm sorry you are having such a hard time of it and I am thinking of you. Hope this can all be settled soon and you can get a diagnosis.
I get to repeat the pill cam again .. number 5!!!

She's gonna run a bunch of other panels now too. She thinks it's something to do with my endocrine system or a weird rare immune problem.
at least the doc does seem to be investigating all possibilities and not giving up on you... hang on in there Drew. ((hugs))
Yeah she really cares. She gave me some direct numbers so I can bypass the whole front desk scenario. So if I need something I can get it. I am going to see my PCP on monday as well to see if he's got anything to add. The GI doc is pretty interested in the fact that I have low testosterone and a few other issues going on.

My Butt Hurts

drew_wymore said:
I get to repeat the pill cam again .. number 5!!!
Save this one for me when it comes out! I wanna make a necklace!!!

What are they looking for if you JUST had a pillcam and they found nothing?
She sounds really behind you - keep her. She'll figure you out soon.
I am sure she'll figure it out. She seems like one of those Doctors who enjoys a challenge and needless to say I'm a challenging case I guess. Here's a list of my symptoms since it might be a decent idea to post them.

Night Sweats
Constant fever of 99.1
Severe cold spells where I'll start shivering even when its 60 out
High white count, currently 12.9
Low Red Count currently 4.4
High MCV @ 97.9
High neutrophils and lymphocytes
Severe Exhaustion, often sleeping 15 + hours a day
Weight loss, I have lost 90 pounds since last May

A pillcam last august showed inflammation and a deep lesion near the TI, that is now gone, first time since I've been sick that it's been gone as the previous 3 pill cams had seen the same issues. I was on Humira for 3 months which means it must've been helping since the lesion is gone.

Most recent colonoscopy shows inflammation at the TI.

All I can think of right now.
does your fever ever go above 99.1? just curious, i really have no idea what to make of any of this.

gosh could it be any more confusing for you? im sorry drew.
i feel like the fact the the humira helped means something....since its an immunosuppresent, then whatever the problem is (crohns or not) HAS to be immune related right?

i hope some type of progress has been made in the last week. let us know when you can