Did my Doc do enough?

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Regular Member

Date Joined May 2010
Total Posts : 111
   Posted 5/9/2010 7:03 PM (GMT -7)   
I am a 29yo female and just went through a round of testing due to episodic gut issues which have been going on in earnest since late 2006 when I got pregnant with #2.  These issues consist of severe, disabling abdominal cramps that make me come close to passing out if I can't get to a toilet fast enough, and then lots of D until it goes away.  Then I'm usually okay until it happens again.  Sometimes it happens several times a month and sometimes I get a reprieve for a month or so.  Anyway, I finally did pass out in March from one of these episodes, and decided "this passing out business can't start happening regularly" and went to a doc.  I always self-diagnosed with IBS, but figured I'd get a professional opinion.  She said, "sounds like IBS," but when I mentioned slight blood, she referred me to a GI.  I had a colonoscopy which was normal (internal hemmies, tho).  But Prometheus IBD serology was positive for Crohns.  So he then did a pillcam test, which didn't show anything, and subsequently has dropped me like a hot cake.  I have no follow-up or anything.  He didn't even say, "conclusion is you have IBS" or anything.   
Other than being constipated right now, I feel pretty decent.  So I'm not in chronic pain by any means.  I have occasional stomach aches.  I'm keeping track of what I eat and any symptoms, BM descriptions (ew shocked  ) to make sure nothing is going unnoticed, but also trying not to look for things that aren't there.  For instance, last Sunday, I had a stomach ache all day, which was worse on the lower right side (it was tender there but no where else, although the feeling went all over my abdomen, if that makes sense), and I went 4 times that morning.  Normally, if it's not directly tied to the crippling episodes I don't really pay attention to other symptoms, but I've had that stomach ache before.  Always think, "oh, it's gas."   
I know that a lot of people with IBD were mis-labelled as IBSers to begin with, or that it took a long time before anything definitive was found.  I feel satisfied with what my doc did...until I get to dwelling on that dumb blood test.  It's this little bit of doubt that keeps saying "what if???" in the back of my mind.  If you were me, and knowing how long or how difficult it was for you to get diagnosed, would you be satisfied with what this doc did?  Is inflammation always visible even if you're not "flaring?"  What is your opinion on the IBD serology?  Is it junk?  
Thanks for any replies.  

Regular Member

Date Joined Mar 2010
Total Posts : 23
   Posted 5/9/2010 7:17 PM (GMT -7)   
I would ask for a referral to a new GI and press for testing. Did they do a CT scan to check for inflammation? Pain in the lower right quadrant can also be due to your appendix...ask for the scan to at least rule that out.
I know that when I am flaring, my pain is in the lower right side and they always to the catscan to make sure that it is my Crohn's and not my appendix.

Advocate for yourself and don't stop until you are happy with an answer. You do not want to brush anything aside because a doctor will not follow up with you...it may land you in the hospital, which is a lot worse than any testing or phone calls to the docs.

Good Luck!
Dx: Crohn's in 2007 (after 10 yrs of symptoms)
Laporoscopy 10/07, Pentasa, Entocort, Prednisone (not working)
6mp - Nov/07-Nov/08 (worked great, but went off the meds in hopes of conceiving-no luck)
Remission until 2/10...Major Flare 3/10
Meds:Prednisone taper and back on the 6mp, Vit.D, Culturelle, Folic Acid, Pre-Natal Vitamin

Veteran Member

Date Joined Feb 2009
Total Posts : 1881
   Posted 5/9/2010 8:51 PM (GMT -7)   
Did they give you any meds for when you have these crippling episodes that make you pass out? I sure hope so. Also, right lower quadrant abdominal pain can be your appendix.
They will probably want to keep a close watch on you to see if you develop crohn's b/c of the positive blood test. It isn't totally 100% though. From what I've read, they use it more in pediatrics than in adults. What did your doctor say about the positive blood test? I've had 2 negative scopes and biopsies while my ct scans always show inflammation. I had one positive scope for inflammation, so we know it is there but they said it was just inflammation while my blood test is positive for crohn's. When they found that out, they did an enterography which is a more sensitive test than a CT scan. That showed inflammation in the large intestines. Sometimes these things take a while to unfold. Hang in there and good luck. Don't ignore your symptoms and pain.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/10/2010 6:24 AM (GMT -7)   
I think I would get another opinion from another GI. I am wondering if a colonoscopy with biopsies might be a test you should request. Biopsies will show if there is Crohns there that can't be seen with the naked eye. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined May 2010
Total Posts : 111
   Posted 5/10/2010 6:26 AM (GMT -7)   
I have a prescription which my GP gave me for the episodes before I was "diagnosed" with anything- it's a sub lingual anti-spasmodic called Hyomax-FT. I've only had to use it a couple of times and it seemed to help one night where I couldn't be at home and started having the cramps.
about the positive blood test - my GI said that it could mean 1) that i had Crohns and he just hadn't found it yet (this was after a clear colonoscopy), 2) i was genetically predisposed and hadn't developed it, or 3) that it was a false positive. But I called prometheus and they said there is no genetic component to the IBD serology, so I question #2, unless I am misunderstanding something about the way the test results are derived.
So scopes are not infallible, huh? Lovely. Well, I am going to seriously consider a second opinion, or at least another GI's opinion of my tests and if he thinks anything else is warranted.
I have another question about CT scans - during all of this, my GP checked out my gallbladder via ultrasound and discovered what seems to be a hemangioma on my liver. I have to have a CT scan in June to basically confirm that's what it is. Would that scan be able to pick up anything going on intestinally? Or is it a different procedure altogether?

Regular Member

Date Joined May 2010
Total Posts : 111
   Posted 5/10/2010 6:29 AM (GMT -7)   
My first test was a colonoscopy with biopsies and it was all clear.  I had two polyps and internal hemmies, but the biopsies (I assume they biopsied more than just the polyps?) didn't show anything out of the ordinary. 
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