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Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 6/11/2010 4:52 AM (GMT -7)   
Hello all,
 
Why is it that we can have so much pain and so many symptoms and the docs cant find anything? I had a cat scan the other day and the results were inconclusive because the barium didn't go all the way through.  To me, this means I probably have a blockage or just crucial inflammation.  I have a colonoscopy scheduled for Monday.  But I've had colonoscopies before when I was sick and they showed nothing! Anybody know why this is? I know trying to find crohnes is like looking for a needle in a hay stack.  I was def. diagnosed with IBD back in 2005, based on my symptoms I know its crohnes and not uc.  I'm just frustrated because my symptoms are the worst they have ever been, my fault for not being on maintenance drugs  I suppose.  I just feel so stupid. Venting sorry.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/11/2010 6:40 AM (GMT -7)   
Crohn's in the small intestine can be very difficult to find at times. After all, we have some 20 feet of small intestine and its all looped around in the abdomen and very mobile. The only value of a colonoscopy for Crohn's is if the Crohn's is active in the colon or very near the ileocecal valve and very end of the terminal ileum. The colonoscope can't reach that far past the ICV and sometimes the doctors can't get the scope thru the ICV even if a healthy colon and small intestine.

Probably the most effective way to find Crohn's in the small intestine is the Pill Camera Endoscopy and if one is strongly suggestive of having a partial or full obstruction there is a risk of the PCE getting stuck and requiring surgery. Anyone considering a PCE with reason to believe they have a high grade partial obstruction is to insist on the use of the Agile Patency Capsule first. This is a capsule that is the same size as the PCE capsule. But the APC will dissolve w/in 3-4 days (or is it 2-3 days? I've forgotten). You swallow the APC and 24-26 hours later you have an abdominal xray to see if the APC has passed or is stuck somewhere in the small intestine. If it has passed you are a good candidate for the PCE.

The problem w/the PCE is that it is not the most cost-effective way to discover Crohn's disease so many insurances are reluctant to pay for it. The only reason the colonoscopy has been the "gold standard" for Dx'ing Crohn's is because 1] if there is any colon involvement and 2] the most common area for Crohn's to strike is at or very near the ICV and of course, 3] biopsies can be taken during a colonoscopy.

And you're right, once you've been Dx'd w/Crohn's, even when not encountering any symptoms you should remain on maintenance meds to help prolong any remission.


My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 6/11/2010 7:43:20 AM (GMT-6)


Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 6/11/2010 6:44 AM (GMT -7)   
Interesting, thank you very much for that information.  I wish more people understood, i seem to be judged by people who have no idea what its like to live with this disease and how hard it is to find at times.  difficult road.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/11/2010 11:18 AM (GMT -7)   
Limbo is a hard place to be. No one WANTS to have Crohn's ..... but ... knowing is easier than the constant limbo knowing SOMETHING is wrong and .... nothing can be found.

(((hugs))) its not a easy row to hoe.
My computer says I need to upgrade my brain to be compatible with its new software.


a_recent_mrs
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/11/2010 12:11 PM (GMT -7)   
I had the capsule endoscopy just yesterday actually. Its a pretty cool test, and is by far the best way for them to visually see what is going on in the small intestines. I agree, go for the 'pre-test' first to be sure it wont get stuck... But, even if it were to get stuck, its just a small laproscopic incision if they need to remove it. A simple xray (and your report of increased sharp, localized pain) would tell them its stuck. I say ask for that test. The colonoscopy and enteroscopy only show such a limited span of your GI tract... But no results can be so frustrating, but hang in there, be your own advocate, and push for results so you can get the maintenance drugs you need! Good luck!
~ Diagnosed with Crohn's disease in 2007; 18" small bowel removed in 2007; appendix removed in 2007; 6MP 2007-2008 with no help; Remicade 2008-present with moderate help; Prednisone with flares -- Chronic migraines diagnosed in 2009; currently moderately controlled w/Gabapentin, Co-Q-10, and no aspertame or caffeine -- Fibromyalgia diagnosed in 2010; currently mildly controlled w/Gabapentin and exercise ~


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 6/11/2010 1:06 PM (GMT -7)   
hehehehe...LIAR! I'm sorta of the opinion this disease would be SUCH a moneymaker amongst the anorexic/bulimic crowd. Not a super funny joke but I consider this when I'm feeling a bit morbid and it makes me kind of laugh which REALLY shouldnt be funny but it is.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 6/11/2010 3:08 PM (GMT -7)   
Lizard99 - funny, my nickname in gradeschool was Lizard!

I can sooooo relate! It took a long time for me to be Dx and by that time, I soon went on a two month disability - I was drained. Did ALL the tests and had terrible symptoms all shy of any obstruction, fistulas, etc ... but bad abdonimal pain, scalp sores, D of course, etc ... they found two tiny ulcers in my lower illieum. My GI doc was 'unimpressed' but agreed it was Crohn's and put me on Asacol (allergic reaction) and then 6MP (raised liver enzyme). Went 4 years w/o any RX (mistake).

Fast forward now and having moved back to the Midwest and my new GI didn't think I had Crohn's! I said, I'd like that - let's try that! He took a Prometheus test and it came back conclusive for Crohn's. Six months later I was in the hospital for a bowel obstruction. Funny, in the past six years of this journey, I've only had one slightly elevated white blood cell count and that was years and years ago. I inquired with my GI doc and he said in his entire career, he has never seen that! Other than my electrolytes, my labs or CT scans, etc are never abnormal. Only recent Xray showed blockage.

I only outline these incidents to show you that you can present differently and still have Crohn's.

Question - if you have already been Dx with Crohn's and are having symptoms, why are you not on maintence meds? What is your doc trying to find? or prove? I'd ask what the purpose is .. I shoudl have as I have lots of medical bills in my wake ....

Another Lizard
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/11/2010 7:14 PM (GMT -7)   
Lizard99,

It's good to vent! It's really frustrating to feel so bad and have docs tell you everything looks "OK"

This last week my md told me my symptoms seemed much worse than my labs and maybe I was just "sensitive"

But, CT scan confirmed some problems and he called to say "wow-you were right."

Grrrr -- I know you how you feel!
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/11/2010 7:32 PM (GMT -7)   
Lizard I wish I had an answer for you b/c I have the same questions. Did you have any tests at all back in 2005 for them to diagnose you with IBD? I hope you get some answers soon. Perhaps an enterography or prometheus lab tests would give some more information.
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!!!


Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 6/11/2010 11:44 PM (GMT -7)   
This is great! Thanks for the feedback everyone.  I was diagnosed with IBD in 2005.  I gave up on the doctors because i was allergic to the medicines and never really found a doc that cared until my current doc.  He didn't recommend any maintenance drugs for me.  Now, i think i have a blockage, tons of pain, heartburn, nasaeua and throwing up.  I feel the inflammation and the heat rising from it.  He gave me some tylenol 3 with codine and i'm allergic to that too and vicadin and percoset makes me feel funny.  i can't even take regular tylenol, it makes me dizzy.  i swear i just can't take any medicine, not even when i have a head cold, it all effects me deeply.  i guess i am just sensitive.  I had a ct scan done the other day and the results were inconclusive because the barium didn't go all the way through.  I guess he's trying find out the progression of the disease and what is giong on.  its just so discouraging when you feel like crap and they say well, i don't know.  i hate that.  it's like there is some physical aspect of crohnes that is not picked up on by the tests.  i mean i know it detects it at times but it seems to be only when we are really really sick.  when i was diagnosed my colon was in horrible shape! so nasty to see those pictures.  I don't know what i'm looking for.  i guess i just want to know what is going on in there at the moment that is causing so much pain.  i'm just worried he won't find it in the colonoscopy.  does the colonoscopy reach the small intestine? or do they need to do an endoscope for that? Can i request it the day of? I have my test on Monday.  Thanks again for all the support, this place is so nice (kind of morbid sorry) its just no one understands! i know no one with the disease that isn't on the internet.  i just feel like such a burden on people, they always worry and the doctors can't see to do much to help me.  i feel like i'm on a journey to figure out this disease.

champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 6/26/2010 12:48 PM (GMT -7)   
So, Lizard, what ever happened? Sounds like you had Ilietis or a bowel obstruction ....?
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 

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