Is it possible I don't have Crohns?

[Zmurray]

I have only had a hand ful of tests, but really they haven't been showing anything horrible so far.

The first was a barium enema which looked fine they said.

The second was a cat scan with barium and iodine contrasts of my abdomen and pelvis, which the doctor said showed some inflamation of the ileum I believe and this is where the talk of possible crohns disease came into the picture.

The last test I did was a Barrium Swallow with a small bowel follow through and that also showed that everything looked good but that I did have signs of acid reflux.

I've had some blood work done and it always comes up normal. I have had a high white blood cell count a few times, but thats only when I go to the hosptil when I'm really sick.

I'm good for a week every once in awhile, but then I'll have bad weeks were I have D over ten times in a day. I've woken up with horrible pain and had to use the restroom several times in a row. There has been sporadic bright red blood in my stool, but thats only happened two times in a few years. I seem to have to be hospitilized at least one every years because I start to vomit uncontrollably out of the blue and it usually ends once I get a few bags of saline and a shot of phenegren. They usually check if I have appendicitis and tell me I have a high white blood cell count and then I go home.

My tongue is almost always white. Sometimes really bad, sometimes just a little, but it's never pink like most people I've seen. Also speaking of strange colors, when I have really bad D over and over again sometimes it will be pure liquid and have an almost neon yellow/green color.

So, I have digestive problems, I really can't deny that. But my tests really arn't showing anything which is obviously bad. I have periods of time when things go really good, and I don't have to really do anything it just happens. But going with that I also have really bad times that just happen also.

I know that no one here is a doctor, and I'm not really asking for a diagnosis. I'm just curious if anyone has similar symptoms and test results and what it turned out to be for them.

Thanks!

 

[killerzoey]

You say you had some blood work done - did they do the Prometheus serum test for IBD? That would be the one, I would think, that could possibly answer your question. I have no idea, personally, what other issues could cause inflammation of the terminal ileum. Could be many, could be none. I had very few symptoms (from what I understand, nothing in my scope screamed "Crohn's!") - but I had a few patches of inflammation, which was enough to make my GI order the Prometheus test after the scope, which predicted Crohn's. This blood test was enough evidence for my GI to give me the diagnosis, even though the scope itsel could not predict the disease. Hope that helps - Jamie

 

[Zmurray]

I'm honestly not sure what all tests they ran, I did get a list of them from my insurance, but it may as well be greek to me!

1 ROUTINE VENIPUNCTURE
2 OFFICE/OUTPATIENT VISIT, NEW
3 LIPID PANEL
4 COMPREHEN METABOLIC PANEL
5 COMPLETE CBC W/AUTO DIFF WBC
6 URINALYSIS, AUTO W/SCOPE
7 RBC SED RATE, AUTOMATED


None of those sound like the one you said, so I'm thinking no, but possibly.

I'm meeting with a specialist in a few months, I'm assuming he'll order the colonoscopy and maybe the test you mentioned. For now I'm just going to take it easy and not do any doctor stuff for awhile!

 

[killerzoey]

Nope, doesn't seem like they did the Prometheus test. I hope your specialist does the test or whatever it takes so that you get some answers. As brutal (and it was) as it was to spend my summer "digesting" and mourning the fact that I have Crohn's, it would (for me) have been far worse to go for years wondering what was wrong with me. Now that I'm in acceptance, I'm glad my doctor ordered every test possible until he found the correct diagnosis.

By the way, my blood work came back normal, too. No elevated sed rate, etc. I had like 3 or 4 CBC's done. The only thing that came back abnormal was once I had a very LOW WBC count that could not be duplicated in later labs, so they chalked it up to a quirk/error.

 

[Kev]

I'd venture a guess (and it's strictly a guess) that you may not have IBD. Have you looked into other possibilities, such as 'Habba Syndrome'? I mention it because the D you describe seems to ring a bell re Habba Syndrome or Bile salt's diarhea. Now, I wouldn't trust either my guess or my memory, but by all means.. if you have not had a definite diagnosis of IBD, crohns, whatever.. you should pursue a 'right' diagnosis.

Whatever you have, you can't start treating it until someone correctly diagnoses you

 

[Zmurray]

I'll be going to a specialist here in a month or so. Do you have any recommendations on what to say and ask for while i'm in there? or should I just go with whatever he recommends and orders?

 

[Kev]

Here's a couple off the top of my empty head... First, write down all of the symptoms you've had in recent memory... and the other doctors you've seen (in case asked). I also suggest that any questions that occur to you pre visit you write down, leaving a space for answers next to each. Then, if there is someone you are comfortable/close enuff to to take with you, even in light of the nature/extent of the circumstances, I'd ask them to tag along. A 2nd party can be a real Godsend, and a great comfort too.
So, in short, listen, take notes, ask questions, note the replies, have someone with you... That's a good start.. Others here will have some great ideas as well.
Good luck... Keep us posted. Here's hoping you don't qualify for this little group!!!