so how many have been diagnosed via pillcam?

I had a colonoscopy and a MRI and they didnt find anything, basically because all the Crohn related "scars" were located up in the thin bowel. The pill cam worked wonders!

Post Edited (Lucho) : 5/15/2012 5:34:41 AM (GMT-6)

I was originally diagnosed by pill cam and the Prometheus blood test, which was positive for Crohn's. My first colonoscopy was normal. Subsequent colonoscopies showed the Crohn's in my ileum, with positive biopsy results, but my first biopsies were completely normal. I think you should do it. It is one more piece of information.

I was diagnosed in large part by pill cam.

My colonoscopies and endoscopies didn't find anything; my CT enterography showed minor enhancement of small bowel in multiple loops, and enlarged lymph nodes, but those finding are too non-specific. The pillcam showed erosions and ulcerations, which, combined with my clinical history, my positive Prometheus results, and my positive family history, were finally enough to convince the docs it was Crohn's.

You bring up a good point.

By itself, finding ulcerations of the small bowel with the pill cam is not enough to definitively diagnose Crohn's disease. Those could be caused by NSAIDs, ischemia, or infectious agents.

thanks guys.. I guess there is a little hope then as NCOT says. Beave, my CTE showed inflammation in the ileum extending to the terminal ileum and enlarged lymph nodes along the iliac chain but no wall thickening (did yours show thickening?). My GP called me and said yep, IBD just need colonoscopy to determine if colitis or crohns.. the GI says he would he HIGHLY surprised if it's IBD.. there's gotta be SOME reason for the pain, fatigue and anaemia yeah? I don't have periods so anaemia isn't from that..

You're right NCOT. it's so hard to keep fighting though in the face of all the negative tests.. sometimes it seems easier to give up.. I'm so tired.. too tired to argue anymore. My partner says I HAVE to keep looking for answers. I am so lucky to have him. He is trying SO hard.. Is doing most of the housework and listen to me whinge and moan..says he HATES seeing me in so much pain.

ok, I'll answer in order just to keep my brain in order lol

I used to take NSAIDS a LOT back in 2006 because of the pains but no longer take them because the doc said not too (because they're bad for IBD even though he says it's not that lo.. go figure!)

family? not IBD that has been diagnosed however my 14 year old son also has the same problems as me. The GP wants him tested as well if I get a diagnosis. There are a lot of bowel issues in the family but no, not diagnosed as IBD.

chronicity.. DEFINTELY. I had a very bad flare in 2006 that went on for about 9 months - they took my appendix out trying to discover the cause but never had other testing except a colonoscopy which was clear but no biopsies that I know of.
had another in 2009 that lasted about 6 months and again last year for only about 3 months and then now which has been going on since Feb/march

international travel? no.

stool tests, calprotectin was <20 ug/g so neg. bacteria, parasites etc negative also

I had no idea at the time how lucky I was to get a quick, no-fuss diagnosis... :\

It mightn't be so bad going undiagnosed if doctors still took the patient seriously. But, dear god, they can be patronising enough with a diagnosis; I wouldn't like to think what they are like without.

Wish I could give more practical advice, Leebie, but in reality I'm kind of stumped as to what to suggest next. To me, your symptoms sound more like IBD than IBS, but I'm not the one qualified to give a diagnosis, so that doesn't really help. Wait, I just noticed you said you had no other tests other than a colonoscopy. I'd ask about stool tests and ruling out (or confirming) an infectious pathogen.

Edit: Another possibility is undiagnosed Coeliac Disease, although I guess that's less likely if you have noticeable flare-ups. Still worth checking out though.

Post Edited (NiceCupOfTea) : 5/15/2012 7:36:35 PM (GMT-6)

The Prometheus test is a special test available in the US - but many insurance companies here do not cover it. I don't know if it would be available for you, but something similar might. It measures blood levels of a few select antibodies, and determines based on those levels whether it thinks you have IBD or not, and whether it's UC or Crohn's. If it's not available to you, you could have them measure your ASCA IgA and IgG levels (antibodies to a brewer's yeast that show up often in Crohn's patients). I think those tests are more widely available. Those are two of the 6 or 8 antibodies measured in the Prometheus test.

Based on your history, symptoms, and enteroclysis results, I lean very heavily towards Crohn's.

any of you also had a clear laparoscopy? They reckon that they would have found crohns during the laparoscopy because of fat wrapping etc that it causes..

ok, so just got out of hospital AGAIN. the pain got unbearable despite panadeine forte and endone.

scopes were clear, biopsies were clear (although one doc said that the stomach biopsy showed chronic gastritis - everyone else said they were all good so I don't know whether to believe them or not about ANYTHING).
was admitted under surgical because of the colonoscopy on monday and I still haven't been to the toilet.. but gastro consulted and said they didn't feel it was IBD related. WTH. despite CTE results they feel that I do not have an IBD at all. especially since they were able to reach the TI and there was no inflammation even though the CTE said there was. I have no idea what is going on. I know I hurt. I know I feel better when I don't eat.

I had a really bad reaction tot he fentanyl they gave me instead of the morphine because I get really itchy.. got SUCH a bad headache I really truly thought I was going to die from the pressure in my head and neck but they kept giving it to me.. my partner came in just as I was really bad and told them to stop giving it to me.. he was so worried. said he'd never seen me look SO sick.

My esr has risen to 19 from 16. still above normal but not enough for them to believe anything is wrong.. they said that even though it's above normal it's not enough to confirm any inflammation. What's the point in having a normal range then????

They discharged me and said just have the pillcam and go from there. called to book the pillcam and they want $2027 of which $1827 is rebated by medicare but not until a week later.. and I don't have 2 grand sitting there waiting to have in limbo for a week so looks like I can't have it :-(

Post Edited (Leebie3) : 5/17/2012 11:43:46 PM (GMT-6)

My family isn't "rich" by any means. They bust their butt to allow my brother & I to go to a very nice private school. We had to talk to the insurance companies constantly(my mom called them so many times, they knew her name & my date of birth by heart:) and we worked out a deal: I had to have a series of tests(I THINK it was a SIBO, some blood work to check for chances of lymphoma, a CT{I had CT's atleast 3 times a week for a year} and a SBFT)and when they almost all came back negative for everything, they approved us for the pillcam. Maybe you can work out a deal like that. OH! & by the way:

I did no get my pill cam results till a month later & the 'specialists' I saw went on vacaion, told his friend to look at the footage and guess what: THEY "LOST" THE FREAKING FOOTAGE!!! When my new GI called to get the results they said "Well, we can't seem to locate the file." WTH?! So you need to MAKE sure your GI looks at the footage.

Hi Leebie
I am that guy who had every test in the world before a diagnosis from the pill cam. The clarity of the film is amazing. It was so clear even I could almost make the Dx.
Also I had the prometheus test. It cost me about $1200 on my crap insurance. The test came back 100% for sure I did not have CD. My doc apologized for wasting my money and said it is not a realiable test and that she will ignore the results. She ended up giving me a bunch of drugs including entocort and pentassa as she really felt bad for waisting my money. So based on my experience, I would not lament not having this test available.
Best of luck to you
Dave