No signs of Crohn's on colonoscopy yesterday

I have never had a colonoscopy that did show anything.  Only the capsule endoscopy showed mine. 

I just had a completely clear colonoscopy last month and I have Crohn's.

I was clear for most of the time too...my doctor was wondering...but it finally showed up on all my biopsies this last colonoscopy. It was clear for most of the 5 years I was with this Doc (I've had the dx for over a decade, but changed docs) even though I was having major symptoms, even losing blood...oh, and the pill cam didn't show anything either...but it eventually reared it's ugly head...
You are not alone...just wish docs would gather information and publish about us "atypical" cases...make it a whole lot easier...

Most of my scopes have been normal looking, though biopsies have shown inflammation, and a couple times, even the biopsies came back normal. Did they do biopsies?

Speaking of them knowing what we go through...the reason I LOVE my surgeon is that he has colitis and has been through a lot of tests and stuff I've had to do. He's so nice and understanding because of it.

Sometimes I start feeling crazy...like if my scope in a couple weeks looks completely normal, knowing how I've been feeling lately. I think we all go through that at some point.

I have had multiple scopes - half show colitis, half have been completely clear. It appears to be a crapshoot, no pun intended.

Thanks!  Yes, he did do biopsies and I will get the results of those in a week or so.  My biopsies have always just shown " acute inflammation" in the past, which this doctor says isn't enough to definitely say Crohn's.  Whatever is causing inflammation I want it stopped, I don't care what it is called.  This doctor does seem to be much more understanding than my last GI at least, I will give him that.  I am just grumpy from feeling so bad.  Thanks to everyone for being so helpful.  I am hopeful that I will get better treatment here with this doctor because it is at the University hospital and I will be a case that the doctor presents to the board soon. 

I had a completely clear scope a week after being in the hospital with a horrible flare. So frustrating.

I had virtually every test including promethus. As I have small bowel issues they all came back inconclusive. Prometheus said "no crohns" Then I had pill cam and the crohns was so easy to see I could diagnos. I am not making this up I could when the doc should me how to interpret the pictures I could see all the ulcers. Please consider a pill cam. Also, I am with you on the head games I play with myself. Is this all in my head? Does my gut really hurt this bad? I am not sure why this dang thing makes me play head games, but even hearing that others struggle with this somehow makes me feel better

Hi Angela
IBS is not a diagnosis, it is a description of symptoms. It really is of no value, but for folks who do not understand, it gets lazy docs off the hook, of doing the work to get a proper diagnosis.
You either need to push your current doc or get a new one.

My doc gave me a dx of IBS and I told him, you mean you do not yet know what is causing my symptoms and he agreed. I than said what tests are we going to run to figure this out. I had a pill cam, hydrogen breath (yes I have/had SIBO), parasites (no), and a bunch of others. I am going for my second colonoscopy in a couple of weeks.

I refuse to let the doc off the hook with a useless IBS dx. I am lucky as he knows it is a cop out and of no value also, and he is more than willing to work with me to get to the bottom of this.

healing thoughts

dave

Pb4 please know I believe we have much in common with our thinking re this DD and how to control it, however I must respectfully disagree with your position on IBS. It is my believe that if a diagnosis does not include root cause and treatment for the root cause, and it is useless.

Treatment for IBS is frequently avoid dairy (lactose intolerance), more/less fiber stomach, acid issues, avoid gluten - gluten intolerance,.... If there is any treatment recommendations it is usually best guess not supported by proper testing. Too often food intolerances, SIBO and other treatable conditions are called IBS which are not treated or treated through best guess or symptom controlling drugs not root cause elimination.

If a doc said to me, you have IBS, avoid milk/grains/gluten or what ever, I would say "why", the only explanation could be "because many have intolerances", I would insist on a test to know. I honestly think many folks suffer from really bad gut issues, labeled IBS, because docs are way too lax in their approach in getting to root cause.

If root cause is understood, then it will not be called IBS, as IBS does not specify a root cause.

I am responding not to argue for arguments sake, but to help and support fellow Crohnies, who also have other gut issues, currently called IBS, to push for more testing, to get to root cause and treatment.

healing thoughts
Dave

Another thought.... It amazes me that I can have Crohn's confirmed by biopsy, pill cam and Prometheus, but if I have a clean colonoscopy, but GI scratches his head and says maybe we mis-diagnosed you....I thought it was just my GI not knowing enough about the remitting/relapsing nature of Crohn's, but from reading this thread it looks like a common issue.....so frustrating!!!!

Hey PB

I hope I did not come across in a way that communicated that I thought IBS was not real. Sorry if I did.

I know folks who are currently diagnosed with IBS can have terrible symptoms. I know some folks with a IBS dx can have it worse than some crohns folks. I was not trying to trivialize the very real pain and impact. I both sympathize and empathize.

What I was saying is that IBS does not identify root cause. I had IBS for years, almost 35 years in fact. Until I got a good doc, who did enough tests to properly diagnose Crohns, I know folks who had IBS, until they discovered they were glutton intolerant. From both my and my GI's perspective, IBS is a placeholder that describes symptoms, waiting to figure out cause.

I believe there are many causes. Some are known and are just not identified for the individual, like Glutton intolerance, or in my case Crohn's or in your article SIBO. I also believe there are other causes yet to be identified. Every time we identify another thing that causes IBS symptoms the number of IBS folks goes down and the number of the new diagnosis goes up.

I just read your article, thank you. I am always looking to read and learn. In fact the article you quote supports my position.

"They found that more than a third of the patients with IBS had SIBO, compared with only 10% of those without IBS"

This makes sense. about 1/3 of the folks with IBS symptoms, have a diagnosis of SIBO. You treat SIBO with antibiotics and Low FodMap diet. This article does not say anything about the other 2/3s of folks or how to treat them. The title of the article is misleading and honestly a bit silly. This article would have been much clearer if it said something like.

Everyone who has IBS symptoms should get tested for SIBO. Our research shows that as many as 1/3 of folks might benefit from SIBO testing and treatment If you have SIBO, you no longer have IBS. The symptoms are not a mystery.

One last thing. I had the hydrogen breath test. I tested positive for SIBO. I took 2 separate rounds of the antibiotic. It did not help me a bit. Darn! I am still doing Low FodMap

Take care and I know you will keep researching and learning along with me. Thanks for sharing

dave