Symptomatic but testing negative

[MrCrohn]

symptomatic but testing negative

OK, I would like to know if there are others going thru the same...

While all the tests are negative (colonscopy, biopsy, blood count, x-ray), I am still having A LOT OF symptoms...

I've had about 12' of my small intestines removed (ileum), and I am taking Questran for bile D. I am still having a lot of gas, urgency, fatigue, sore muscles and joints, and other CD symptoms.

I wonder if these are all due to the resection (unlikley b/c I have felt better post-resection...) or my body just knows how to hide active disease markers...

 

[Mountaingem]

No, don't feel bad, I used to have the same problem. Colonoscopy would look normal, just slightly irritated;inflammation markers only slightly elevated; but I would be in terrible pain, vomitting, diarrhea, blood loss, you name it.

When I had an abdominal hysterectomy the surgeon noticed thickening and ulceration on the outside of the intestinal tract-so the Crohn's had been hiding on the outside wall of the colon. She actually photographed it and sent it to my GI.

Since I've had the disease almost 20 years, it has led to complications such as narrowing and scarring of the small intestine, but it took years to show. If your disease not aggressive, it takes longer to show actual signs.

My diagnosis came not from the colonscopy, but from a combination of things-iritis, symptoms of rheumatoid arthritis, bleeding from colon, bowel symptoms, white cells present in stool, skin complications, etc.

 

[allieinwonder]

I am having the same exact issue. It seems like IBD can be like finding a needle in a haystack. I have had a colonoscopy, endoscopy, CT scans, ultrasounds, and stool and blood tests. I have all the same symptoms as you, as well as abdominal pain that keeps me from doing anything basically.

I wish you luck in finding that needle!

 

[Domsmom]

What a weird and awful disease this is. I would say that my Crohn's is mild compared to your symptoms @MrCrohn and @Mountaingem, but my first colonscopy and biopsy were quite conclusive. Does anyone know why it does this? I hope that you start to feel better soon @MrCrohn!

 

[littlemissh]

Took 15 months for my diagnosis but looking back it probably started 7-8 yrs ago and went into spontaneous remission for all that time...until now and its not playing the remission game...

 

[MrCrohn]

interesting... let me elaborate a bit more. About 10 years after my first resection and having all the CD symptoms, while testing absolutely negative, the conclusion was that my anastomosis was too narrow and that was the reason for my symptoms. So I went ahead w/ a second resection just to remove anastomosis (and this is where it gets interesting). Lab results of the removed anastomosis showed "EXTEME INFLAMMATION". So... after 10 years of hearing "maybe it's a bug give it a few days, it's in your head take some anti-depressants, etc" it was "oops, guess we missed the extreme CD in your gut".

CORRECTION: I have had about 12" of my gut removed, not 12'.

@mountaingem: active disease on the OUTSIDE of the colon... can you tell me a bit more about that? I intend to talk to my GI about this.

I wonder if an MRI can show what you cant see in a scope or a CT..

 

[Grumbly-Guts]

MrCrohn,
Itoo have the same problem. I was COMPLETELY obstructed and my inflammation markers stated I had NO inflammation! I have been told several times my colonoscopy/MRI/CT Scan/X-rays/blood/stool/urine/biopsies lokked PERFECT only to be in the hosital weeks sometimes days later either requiring an admission with TPN, surgery, or drains etc.
Right before I was very first dx, i was throwing up blood (coffee grounds) and passing bloody bm's (black and tarry), severe pain, weight loss, vomitting etc. had an emerg. CT and was then told off by the GI who perfromed it for "wasting valuable time, sacrificing other 'real' patients health and for blowing a hemorrhoid out of proportion!" Then the GI proceeded to tell me I had "perfectly healthy bowels and DEFINITLY did NOT have CD or UC". My GP even took stool and blood samples and nada! And 10 days later I was dx, finally, with CD and a complete obstruction requiring 2 surgeries and a 3mo. ostomy, with almost 3 mos in the hospital!!! b/c of the cd that was wreaking havoc on my intestines!
I have found in the past that I have been extremely symptomatic with no other "proven" tests to confirm. I have also talked to others who have said the same things.
Hope that helps!

GG