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Pillcam not sufficient for diagnosis?

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Crohn's Disease
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Posted 5/18/2017 12:56 AM (GMT 0)
Hi everyone...new here!

I will explain some background briefly, but I have suffered from GI problems since age 7, with a family history of ulcerative colitis (my dad was diagnosed at age 9 with severe UC). Im currently 23 years old. I'm in the middle of a bad flare, and got a second opinion when it was written off once again as IBS, with no treatment plan. I suffer from severe daily nausea, abdominal pain, diarrhea, weight loss, etc etc. I have had MANY tests done in the past few months, with a clear colonoscopy and endoscopy, a fecal fat test showing malabsorption, a really high fecal calprotectin, and vitamin D and B12 deficiencies. I had a negative SIBO test and MRe, too. I just had a pillcam study done, and it showed ulcers basically from the second the camera entered the small bowel, all throughout. Now my doctor is saying this isn't enough for a diagnosis, and I need a tissue diagnosis, so I have to do a repeat colonoscopy to try to reach further into my ileum to get biopsies.

Has anyone had a similar experience? I'm so frustrated! My doctor is so thorough and really awesome, but I'm just feeling like I have so many tests that point to IBD, I don't understand why I can't start being treated yet. I'm on so many medications, none of which help me. I know it takes time to make a definitive diagnosis, but after almost a year of this flare, I'm at my wits end.
Posted 5/18/2017 1:39 AM (GMT 0)
They do like to try to get a positive biopsy if they can, but its seems like if they can't get into your terminal ileum with the colonoscopy, you might ask if they can try treatment to see if it helps. My first colonoscopy/endocscopy was completely normal but I was very anemic. 6 months later the pill cam showed bleeding ulcers in my small intestine, and at a follow up colonoscopy, the doc was able to get a positive biopsy for Crohn's. If the pill cam showed tons of ulcers, then now is the time to do the repeat colonoscopy.

I do understand your frustration though, and I would be very surprised if you don't have Crohn's disease. welcome to the forum btw!
Posted 5/18/2017 1:44 AM (GMT 0)
That is really frustrating! I'm wondering if a part of it is an insurance issue. Most Crohn's medications, the biologics at least, are pretty expensive and your insurance company might insist on the biopsies being positive before they fork out the money. I'm so sorry it has all been so rough.
Posted 5/18/2017 3:48 AM (GMT 0)
My pill cam showed ulcers in the mid-distal jejunum and inflammation at the ileocecal valve. The report concluded "suspected Crohn's ileocolitis." I started prednisone and had a colonoscopy 3 weeks later. The cecum and terminal ileum were healed/normal so my doctor diagnosed me with UC and told me she was dismissing the pill cam results because she didn't feel like they were reliable. I had always thought pill calm images were enough for diagnosis but I guess not. That said, at my appt today my doctor attributed my persistent B12 deficiency to backwash ileitis so who the heck knows?? You are right to be frustrated that the doctor won't make a diagnosis with such obvious pill cam results - if ulcers throughout your intestines as seen on a camera aren't enough to make a diagnosis, why bother wasting the time and money on the test in the first place? What were they hoping for? That is what I'd be asking that doctor.

I do think a lot of it has to do with insurance issues, as scifigal2k said.

I got sick in July 2014 and didn't get a diagnosis until March/April 2017. Don't give up.
Posted 5/18/2017 1:08 PM (GMT 0)
I'm assuming coeliac disease has been ruled out?

If the colonoscopy doesn't get you anywhere, I'd ask about having a balloon enteroscopy. It can take biopsies of the small bowel, which a capsule endoscopy can't do. There's two types of balloon enteroscopy: single and double. I think the double version is better for visualising the entire small bowel, but to be honest it's not a test I know a lot about. It's not a test that's commonly performed, maybe 'cos Crohn's can usually be diagnosed without it.
Posted 5/18/2017 1:55 PM (GMT 0)
Thanks for your replies, everyone. I agree that I think it's an insurance issue because the meds are so expensive.

@nicecupoftea: yes, celiac disease biopsies all came back negative. I also did low FODMAP for a few months, and I actually feel much better when my bread/carb intake is higher, interestingly enough. My doctor considered a double balloon study, but for some reason decided on a repeat colonoscopy where they'll work harder to get up into the terminal ileum. I just hope the repeat colonoscopy confirms their suspicions, so I can begin treatment!
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