Still no diagnosis...

[AgB621]

So I called my doctor today and this is what they said: "Your capsule endoscopy was normal, so we're leaning towards Crohn's."

How does this follow? Every test looks normal, but unless most doctors they kindly take the fact that I sure as hell don't FEEL normal as a sign that there actually is something wrong. But it's not clear to me how they've ruled out other things, and also why they're so convinced I have anything. The fact that I don't feel good isn't enough for most doctors, especially once they find out I'm bipolar. Suddenly, everything is related to that or the meds I take for it. I mean, I'm glad they take me seriously, but so many doctors have made me feel like all my symptoms are in my head that it takes me aback when they look at something more than their test results.

So this makes two colonoscopies, an upper endoscopy, a capsule endoscopy, and a CT enterography, all with normal results (with the exception of the first colonoscopy, which was inconclusive due to the C. Diff...they couldn't tell what was Crohn's and what was just the infection). My blood work is positive for the Crohn's markers, but I hear that isn't definitive. And the only other thing that suggests Crohn's is the fact that the meds help (and when I didn't take them, I got sick again). Would Asacol help if it were just IBS? Can I really have Crohn's that's hidden from every one of these tests? This is so frustrating, I just want to know what's wrong with me!

 

[drew_wymore]

99% of the tests I had were negative, the only thing that _proved_ anything was the capsule. It could be that you're not currently flaring real bad right now, transient disease that Crohns is.

Asacol working doesn't prove it is Crohns but since it's a 5-ASA it does prove that you have some type of inflammatory process going on somewhere.

I am of the opinion that I was sick for many years before I got _really_ sick and even then it took years to get a diagnosis because my blood work was always just a *bit* off but was brushed off.

So don't give up. And fsck the doctors who want to blame it all on bi-polar. Although some of the bipolar meds can cause diarrhea as a side effect, seen it happen, not pretty eek.

Anyways don't give up hope of getting a proper diagnosis. I've gone through 3 PCP's and I'm on my 3rd GI now.

I swear some of us need to end up on that Discovery Channel show Mystery Diagnosis ..

Keep us all updated please.

 

[pb4]

That is frustrating...crohn's can hide in many nooks and crannies within the twisted bowels and I've heard that even the smallest amount of undetectible inflammation hidden in a nook somewhere can still produce symptoms of D and such.

Asacol would not help IBS, asacol is used to treat inflammation in the colon (not the small intestine) from either crohn's or ulcerative colitis and I think microscopic (collagenous) colitis...did they take biopsies from your colon to see if maybe it's microscopic colitis that you have? Microscopic colitis aka; colleagenous colitis cannot be detected via colonoscopy and the naked eye (hence the name, microscopic).

 

[AgB621]

pb4, I have no idea what sorts of things they looked at in my colonoscopies. I imagine they looked at as many things as they thought were necessary, I do like my GI and I do trust him. He doesn't blame a thing on the bipolar, and negative test after negative test doesn't deter him from thinking something is still actually wrong. I was really counting on the capsule proving Crohn's, I figured that I had enough nausea/bloating/discomfort in the region that chances are the disease was somewhere in my small intestine. I asked if the capsule should show Crohn's even if it wasn't really active, which right now, it's not...I don't feel good, but I know what it feels like to flare, if that is indeed what happened, and things are relatively calm right now...I feel pretty awful, but no D, and certainly not like I felt when things were less calm. But they said the capsule should show it no matter what...maybe it just can't see enough, or maybe it's still hidden in some place they can't see, or maybe it's just really inactive. I don't know, I'm really disappointed. Not that I want Crohn's, I just really want an answer.

Also, Drew, luckily not too many people have blamed my bipolar for my feeling sick this past year. It's mostly the chronic fatigue I've had for 11 years that everyone says is just my meds. (It's not. Not one of these meds have I been on for the past 11 years.) And when I got sick last year, it was pretty hard to argue with a white cell count of 27, LOL. I've had some minor stomach symptoms for longer than that, my guess is they're related. I remember having stress-related pain and D as early as 9, and I remember a time in high school where I was having D every day, I'd go to the nurse's office after lunch and spend half an hour in the bathroom. My PCP said it was IBS, but I wonder if it wasn't whatever I have now (which I guess they haven't ruled out IBS but if that's what this is then...yikes), just in a much milder form.

They probably should have done more tests while I was flaring (if that's what was happening) back in August. My doc took me off the Asacol in July, and in August I got all the symptoms of C. Diff back, to a lesser extent, but I still ended up in the ER again and felt pretty horrible. When I started the Asacol again, I started to feel better within a few days. For awhile, I got really stressed and I could sense that the only reason I wasn't in a crisis was because of the Asacol, but eventually some of the symptoms started to sneak back so my doc put me on Canasa (Asacol in suppository form, fun!) and Ranitidine, and the combination curbed the D and nausea to some extent. It would just be awfully coincidental if all I had was IBS and it just happened to get better at the same time that I started the meds for UC or Crohn's...

 

[pb4]

You might have IBS as well as CD, if they have enough evidence from your tests previously indicating CD but have not found any inflammation recently then IBS could very well be the culprit, especially with having gas and general discomfort in the area.

I have IBS and crohn's as many do.

 

[AgB621]

It's been over 9 months for me so far, since the C. Diff...I'm just so frustrated with all of this. I hope it isn't Crohn's, but like I said, the meds help...and I'm really not sure they would if it was IBS only. Maybe I have both, I don't know. I moved up my next appointment with my GI doc to Jan. 14th and I'm going to ask him what he thinks and how we can go about getting a positive diagnosis of something. I thought I was finally closing in on an answer, that if it was Crohn's, the capsule would show it for sure. But it was negative and the doctor still says Crohn's and I want to know why...and how to know for sure...cuz all this is just driving me nuts.

 

[MINI Cooper]

I know how frustrating it can be as well. I went a year and a half without
a diagnosis. I was on antibiotics, pain pills and TPN just to keep me alive until
I got a new GI who gave me a proper diagnosis and began treatment. Maybe it
is time you look into seeing a new specialist yourself? Just don't give up!

 

[AgB621]

I'm moving after I graduate (most likely) so I'll have to find a new doctor at that point anyway. I really like mine, though, and I don't think he's doing anything wrong or insufficiently. It really could be that my disease isn't all that active (or all that serious), I'm still pretty functional, and my daily symptoms are pretty mild comparatively speaking...but it is taking 5 prescription meds and Gas-X and Pepto pretty much daily to maintain that. So, nowhere near death, but definitely not normal.

Actually, my GI recommended I see another doctor in his office who he said was a Crohn's specialist and she thought Crohn's was unlikely...but unlike him, she looked at the tests and ignored my symptoms (it felt like). She dismissed the positive Crohn's markers in my blood (which I know isn't all that definitive, or even remotely definitively really...) and said that a negative colonoscopy meant I probably didn't have it. I pointed out how sick I got when I went off the meds, and she was like, "Oh, IBS can make you feel pretty lousy." Like I had C. Diff all over again lousy, apparently. I don't know, we'll see.

 

[LittleJon71]

Hang in there AGB -

It was 5 years without a diagnosis for me back in the 80's. As a kid, I was told I was constipated, had ulcers, anxiety, appendix issues, was a 'late bloomer', and all kinds of not very useful things.

Finally ended up in the ER at age 15, where they ran the same tests as my old doc did and immediately said Crohn's. It was actually a moment of immense relief for my family and me....at least we knew *something*.

So keep up the good fight, and it's great that you have a doctor that doesnt discount what you are feeling....who would ever choose this?

Love
LittleJon

 

[drew_wymore]

Get a second, third, fourth opinion. I had an old GI, the first one I saw, get his entire group together at the practice and go over my case to get more ideas on how to treat me or how to approach things. It never did pan out, hence moving to another specialist(s). Get a print out of your entire medical record and find someone else, then someone else and then someone else until you find someone who wants to help you.

I'm not saying your current doctors aren't but it never hurts to have a fresh set of eyes on any hard case.

 

[AgB621]

Thanks, Drew. My GI did want me to see another doctor in the office and she thought Crohn's was "unlikely". She blamed IBS, but that feels like a stretch to me...could IBS really make me this sick? My GI disagreed with her assessment, and she sounded like the main reason she didn't want to say Crohn's was because it would make insurance trickier. She also said that a negative colonoscopy means I most likely don't have it, but I think anyone here can tell me that that isn't necessarily the case. I'm really not sure what a fresh set of eyes would see that my GI couldn't, unless he seriously missed something when he read my capsule endoscopy. I'll ask him about it when I see him next week.