Weird Crohn's symptoms?

That's a good suite of tests that have been run - and that's a good sign that the docs are very competent.

The MR enterography is a logical next step. Also consider the capsule endoscopy, where you swallow a small pill with camera and it records video through the entire small intestine. It's a fascinating test and fairly easy. You just have to make sure there are no strictures (narrowings of the intestine) so it doesn't get stuck. The MR enterography will show if there are any strictures, so the capsule test should follow it (if it's needed at all).

I would also recommend one of the IBD serum assays, such as the Prometheus Labs IBD test. These are just blood tests (so they're easy), and they look for certain specific antibodies. They can predict IBD or no with about a 90% accuracy (give or take). They're not the final word in diagnosis, but taken together with the other things your daughter has had tested, it would be another piece of the puzzle to look at. Some insurance covers it, some may balk, but in situations like this if they won't cover it you may be able to appeal with your doc and get it covered.

As for the symptoms, well, they vary so much from one person to another. I tend toward constipation way more than d, and am thin myself, and my main symptoms have been nausea, fatigue, lack of appetite, all worse in the mornings. My standard blood work (cbc, crp, esr) has always been totally fine. Crohn's can present itself in so many ways, in part because it can be present in different places along the GI tract.

High fecal calprotectin is usually indicative of inflammation in the colon moreso than in the small bowel, but it could be from either I suppose.

From what I've heard, it doesn't have many false positives, although I did read that taking ppi's can lead to false positives (ppi's being proton-pump inhibitors, ie, gastric acid preventers like Prevacid and Nexium). Has your daughter been taking ppi's?

Beave- question. How has Crohn's presented in your case? Asking as some of your symptoms are similar to my daughter's. Thank you.

Beave- sorry to hear about your troubles, but thank you for spelling this all out for me. Kudos for managing all your issues with minimal meds. This input is good to know.

Hi Beave- Are you familiar with Takeda entyvio? Its PDUFA date is May 4, 2014, so hopefully it will hit the market on or around that date. It seems really promising.

Information: http://www.healthline.com/health-news/crohns-new-drug-to-treat-ibd-shows-promise-082213

An acquaintance of mine, a clinical GI Crohn's specialist in NYC has been helping with the clinical trials of this for years and has had many patients on it. He is really excited about it.

Also- At what age did your symptoms appear, and what were the early symptoms?

Thanks!

hi Beave- Well, you are clearly educated and going to great doctors. Seems like you are really taking care to understand your condition and options.

@beave - That's quite the diagnosis.

I still don't quite get why you were fobbed off for so many years, though, and why the leading IBD docs were so sure it was not Crohn's. Did the doctors do any colonoscopies or small bowel tests?

Also, as the Prometheus test is not incredibly reliable, I presume it was more the capsule endoscopy which sealed it? Did you have Crohn's in the middle of your small bowel, where a colonoscopy or endoscopy could not reach? Sorry if I'm being nosy; I just find it quite an interesting case.

My own diagnosis was really boring, but relatively quick. No mistakes made, I got the Crohn's diagnosis after my first colonoscopy. I did have my GI convinced I had infectious gastroenteritis when I was in hospital for a Crohn's flare up though; I knew from the very beginning that gastro flu was complete bollocks. But I still had my IV steroids removed and was isolated in a sideroom. At least I was only misdiagnosed for about 2 weeks, but I could have had a colonic perforation or something in the meantime. Dumbasses.

NCOT, since I was always complaining more of upper GI symptoms than lower GI symptoms, the docs earlier on did things like upper endoscopies (had many of these done) and ultrasounds of my gall-bladder. When none of that ever showed anything, it was proof enough to them that there was nothing physically wrong with me. One GI I saw around 2001 when I had lost weight and was having abdominal pains when I ate anything at all, said the only explanation was 'illicit drug use' and that if I wasn't going to be honest with him and admit my drug problems, then there was nothing he could do! Still makes me angry to this day.

It wasn't until I was hospitalized in 2006 that they looked at my colon at all. I had a sigmoidoscopy in the hospital that showed reactive inflammation to something upstream - and thus they thought that I had an infection.

Later in 2006 I went in for a full colonoscopy, and it was an adventure. I was given fentanyl and versed and then started the procedure. I have no memory of this at all, but apparently I was in a lot of pain and being vocal about it, so they gave me max dosages of fentanyl and versed and continued. At this point, apparently I got extremely angry, cussed out the doctor really loudly and threatened to punch him and throw him against the wall if he continued (and funniest thing is, I'm a 140 pound weakling; I probably couldn't have beaten up one of the nurses!). Anyway, they had to stop the procedure. Like I said, I have no memory of any of this, but the nurse told me all about it at my follow-up appointment, and for a long time after that, the whole staff would laugh at me and the GI any time I came in. It was embarrassing but pretty funny too, I have to admit.

We re-did the colonoscopy a few months later with a max dose of propofol and the doc was able to get through the entire colon but said I was still squirming and moaning and that he couldn't get past the ileocecal valve, so they never saw the terminal ileum. The colon was completely clear.

The CT enterography from 2006 showed small bowel edema and enlarged lymph nodes but that's not specific enough to say it's definitively Crohn's. Could be infectious, could be allergic. They sent me to an allergy/immunology doc and he skin-prick tested me for dozens of foods and said I was allergic to dozens of foods - soy, peanuts, potatoes, green beans, tomatoes, lots of other fruits and veggies. So they thought that was it. I started a hugely restricted diet, didn't notice any change. But then follow-up challenge tests showed none of them were real allergies - no reactions to any of them when re-introduced.

You're right about the Prometheus test. It's not perfect and by itself not enough to make a sure diagnosis. But it came back with me positive, and that along with my brother (family history) and the positive-but-not specific CT enterography, plus the capsule endoscopy, which showed multiple ulcers in the ileum/terminal ileum, was ultimately enough.