Tests came back negative -- no answers.

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

brooklyn23

brooklyn23

Joined
Oct 21, 2011
Messages
254
Tests came back negative -- UPDATE

I really just want to cry right now, because my capsule endoscopy came back negative. Nothing. No explanation for the pain I'm in, and therefore no treatment. I don't know what to do, I'm so upset.

----2/25/15----
Okay, so after reviewing the pillcam footage, there are no plaque-like ulcers that I had in the past, but there are some very bizarre red marks, almost looks like they might be bleeding? Doc isn't entirely sure what it is, but he is putting me back on Pentasa because I am showing symptoms.
 
Last edited:
Oh lovely I'm so sorry. Isn't it a strange world we live in where a negative test is actually not what we wanted. We all understand that feeling. It's because we so want to feel better.

Have you had a fecal cal (a stool test for inflammation) ? This can pick up even microscopic inflammation that might be missed on endoscopies.

Keep pushing them, you know your body and you know when you need help
 
I've started keeping a list of things I've been tested for and come back negative, looking for the cause of my pain, usually on my lower right side.

It's not PCOS or endo or fibroids or Crohn's. (Which after multiple clean capsule endoscopies and only one that showed inflammation, I might just guess I never had crohn's to begin with.)

My doctor says it's just ovulation pain, but when I tell him it's so severe I can't get out of bed for four days, he just shrugs. And it doesn't explain why I have pain other times of month as well, or why I struggle with constipation and other stomach aches.
 
What tests did you have to rule out endo? I ask because most doctors agree that the only way to rule out endometriosis completely is to do an exploration of the abdomen with a camera.

As for only having inflammation show on one endoscopy. That is not uncommon and doesn't mean you don't have crohns, it could simply mean that the disease has moved to a different location.
 
I had a laparoscopy in August to rule out endo, they found a single filmy adhesion on the ovary that was not the one that triggered my pain.

And I had both the capsule endoscopy and colonoscopy come out completely clean. I don't know what to do now.
 
Thank you so much. It feels so helpless sometimes when I can't find anyone who's experiencing this anomaly.
 
And when I say ovulation pain, I mean that's how the timing of it goes. But it starts there and it spreads through my entire body. Primarily my abdomen, it hurts to the touch, it hurts to breathe, it hurts to exist. My skin and joints start hurting, no fever, no D, but I can't eat because putting something in my system hurts....

I just... I need it to stop.
 
I can relate!!! I have had Crohn's symptoms on and off for years and tests are always negative.
My stool test 18 months ago showed occult bleeding, and I was severely anemic, yet my capsule test was negative as was my lower scope! So tell me, where is the blood coming from!?! UGH, frustrating...I feel ya!!
 
Have you checked kidneys with an ultrasound specifically ?
I know had mysterious abdominal pain docs insisted was ovary related but really was an extremely larger kidney stone stuck in my kidney for years .
I do not have Ibd but my kiddo does
It never showed on any test -only had the ultrasound due to kidney stuff found on DS when he was dx with crohns
Go figure my kiddo fixed me
 
Thanks you guys for the support. Turns out "negative" wasn't so much negative as "huh... that doesn't look like typical IBD but it doesn't look right either." There were a few small red patches that looked like... it looked like it might have been bleeding but not necessarily.
 
Yup, been there for years!! Hang in there. Mine was never positive but not necessarily negative. Oh the fun :(
 
LOLOLOL my body is so fricking mean. Right after all this, I'm suddenly starting to get D and bad stomach cramps. FUN!!!

OH and my insurance denied my Pentasa
 
I took it in the past, but it's been almost 3 years. And now my insurance won't cover it so I don't have it.
 

Similar threads

M
Going in circles
Replies
2
Views
1K
my little penguin
my little penguin
K
Possible Crohn’s disease
Replies
10
Views
2K
musicalwiz
M
Papantoine
Neglect?
Replies
2
Views
577
Bufford
Bufford
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
H
New, Confused, Humiliated and No Answers
Replies
6
Views
2K
my little penguin
my little penguin

Latest posts

Back
Top