Diagnosed - now undiagnosed - what's up?

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kwlulu24
Regular Member


Date Joined Mar 2007
Total Posts : 31
   Posted 11/22/2007 3:38 PM (GMT -7)   
After clear cut symptoms of CD's, blood work that showed the CD "markers" I was scheduled for a colonoscopy that showed no inflamation, but my Dr diagnosed me anyways with CD
 
10 months later, the Dr. has now changed his diagnosis to IBD and not CD - and wants an upper GI series sometime in January.
 
How many times have you experienced this diagnosed/undiagnosed game? Do I still have to tell other Dr.'s that I MIGHT have CD? Anyone take "Levbid" (sp)?
 
Happy Turkey Day

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/22/2007 6:37 PM (GMT -7)   
Hi Just took once for me but some here are still dealing with the diagonising problem. Yes I would let Dr's know you might have it and that you are awaiting furthur testing. IBD is inflamatory bowel disease that includes CD and Colitis. So perhaps your Dr. thinks you might have Colitis. So how are you doing and are you having many symnptoms? lol gail

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/22/2007 6:41 PM (GMT -7)   
IBD is crohns or ulcerative colitis, do you mean IBS?

Crohns is a funny thing, there could be minimal inflammation somewhere that tests were not able to pick up on and cause grief still. A good doc does NOT rely on a colonoscopy alone since crohns can affect the entire GI tract from mouth to anus...so you very well could have some small intestinal activity going on but you won't know until the upper GI tests are done.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/22/2007 6:53 PM (GMT -7)   
I was positively diagnosed and then undiagnosed a few months later. I have had all the tests over and over and now appear to have adhesions that mimic crohns. I am sorry you are going through this--it is really a pain! as for docs, I tend to tell them the whole thing, but I have had the same docs forever, so they all knew about it anyway. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


sweettea
Regular Member


Date Joined Sep 2007
Total Posts : 32
   Posted 11/22/2007 7:17 PM (GMT -7)   
pb4 said...
IBD is crohns or ulcerative colitis, do you mean IBS?
This is similar to situation, except the colonoscopy showed several areas of inflammation, and the biopsies didn't prove out the dx of Crohn's.  The GI is calling it "non-specific colitis" and says it IS certainly IBD, even though it is neither definitively Crohn's or UC. 
 
He said he has several patients who fit into this catagory.
 
Vic
_____
IBD- Colazal, Canasa, Entocort EC, Bentyl
Migraine- Fioricet, Topamax
Fibromyalgia- Zoloft,  Tramadol (prn)
Immune Disfunction Disorder? - Antibiotics out the wazoo, steriod shots
 
Your father was a hamster and your mother smells of elderberries - now go away or I shall taunt you a second time!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/22/2007 9:41 PM (GMT -7)   
So you have inflammation in the colon from either crohns-colitis or ulcerative colitis...

2 ways a doc can define between the 2 is, with UC the inflammation remains on the surface only and the entire area will be inflammed, with crohns, there will be skipped patterns of inflammation with healthy tissue in between and the inflammation can penatrate beneith the many layers of the intestinal lining...

I don't know why so many docs have troubles with DX conclusively, then again it can be tricky with crohns because it doesn't always penatrate past the first layer but the skipped patterns of inflammation is the major clue in defining between UC and CD.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 11/22/2007 9:46 PM (GMT -7)   
I too was diagnosed and undiagnosed with Crohn's. I went a year with the CD diagnosis and fought it the entire time. Now we believe my problem is IBS (which I always had) and food intolerances/sensitivities, although I don't actually have celiac disease. It can be a tough thing to diagnose, that much I know. I wish you luck.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 11/23/2007 9:45 AM (GMT -7)   

Starr-

I'm curious why you are on remicade and methotrexate if you no longer have a crohn's diagnosis?  

I am also sensitive to wheat, cow's milk protein and a few other things.  Did you have blood tests done?

My personal theory is that I am sensitive to those things *because* of crohn's.  An intestinal lining that is not working properly which would be the case if there is inflammation would allow things to cross into the blood that normally would not and that our immune system would not normally have to deal with.   


10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/23/2007 11:23 AM (GMT -7)   
Maybe you're sensitive to those things now because maybe those were your triggers for crohns (afterall who knows how long it can take of eating certain things before it finally triggers CD to attack)... with crohns you have to be predisposed to getting it before it can be triggered.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 11/23/2007 3:31 PM (GMT -7)   
Rootsmith - I have Rheumatoid Arthritis and Ankylosing Spondylitis (have for many years), hence the Remicade and MTX. However, I will no longer be on the Remicade since I had a severe anaphylactic reaction this past Wednesday during my infusion.

My Prometheus' all came back negative for CD & UC. My last test was a celiac test. While that came back negative for celiac, my GI commented about the sensitivity/intolerance issues. Keep in mind, I've also had the other diagnostic tests as well and only one test came back 'questionable - not positive for CD.' My last diagnostic test was the CTE scan and it came back absolutely clean from my gallbladder to my colon...it showed a few things in my uterus that we didn't know about though!

I've been gluten, wheat & dairy free for quite a few months now and the difference is unbelievable. The most significant difference is the lack of pain that took me to the GI in the first place. Coincidence? No telling. I have always felt awful after eating those things which I don't anymore, long before we even talked about crohn's.

I do know that I feel a gazillion times better than I did, so I'm going with that, unless something seriously changes down the road.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 11/23/2007 8:34 PM (GMT -7)   
It is interesting how we are all so different. Even though a lot of things improved with me when I went off wheat, cow's milk, egg, corn syrup (joint pain, muscle pain, canker sores improved tremendously, and my blood pressure improved) my gut did not change. I haven't eaten those foods in almost 2 years yet during that time my gi problems advanced. None of my tests show anything either, other than a slightly elevated p-ANCA I had major improvement, mostly with pain, when I went on pentasa.

Pb4- I think I've had crohn's since the early 1970's. But you are right- it is hard to know which came first
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


RedAurora
Regular Member


Date Joined Feb 2007
Total Posts : 88
   Posted 11/24/2007 3:41 AM (GMT -7)   
Same thing happened to me. Clear CD markers, inflammation shown on colonoscopy, saw another specialist 5 months down the road, Told me that it was a bacterial infection and now I have post infective syndrom. I havnt shown any crohns symptoms since Feb of 2007 when diagnosed and no previous symptoms before then. I was told that if the doctors would have given me antibiotics it would have cleared up in 7 days insted of being on prednisone for 5 months. I was so angry. I'm not sure who to believe

25 yr old female. Diagnosed with Crohn's on Feb 14th 2007 confined to the terminal ilieum, Asacol, Levsin, Nexium 40mg, Percocet, darvocet, phenergren.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/24/2007 2:19 PM (GMT -7)   
BEEN THERE. DONE THAT.
Once again, this DD is like that really scary noise your car makes. Until you get it in the shop..
Then, NOTHING.
Yours is not an unuasule case at all.

Matthew

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 11/24/2007 8:04 PM (GMT -7)   
Sorry, the disease is bad enough...getting an accurate diagnosis shouldn't be so hard! Have you had the IBD Serology blood test from Prometheus labs? It would be another marker to help you rule out Crohn's. I was in the hospital in Oct. 2006 with severe anemia...had a perfectly normal colonoscopy, endoscopy and SBT. One year later I got very sick, and they did the camera swallow, where they found an ulcer in my small intestine, and repeated the colonoscopy where biopsy of the ileum showed Crohn's. So my advice is get a full work-up, but my guess is that when you are in remission, things might not show up. Good luck.
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007

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