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Crohn's Disease Forum » Tests for IBD » Capsule Endoscopy


05-21-2014, 01:55 PM   #1
alybaly402
 
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Capsule Endoscopy

Hi All-
I might be getting a capsule endoscopy.
Has anyone ever had one before? What was your experience.
How long did it take to pass?
Do you have to swallow it at the GI's office?
How long does it take to get the results?
Were you diagnosed with anything?

Thank you!
05-21-2014, 03:31 PM   #2
Ali29
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Yes, I had mine in January 2014, diagnosed with Crohn's in small intestine, blunted villi. I swallowed the pill at the GI office - it is a little large but not difficult. I didn't see it actually come out of me. It took a week to receive my results. It was not a bad experience - visit GI to swallow pill at 9am - came back at 5:30 for them to remove the recorder that you carry around all day. I took the day off from work since I didn't want to walk around with it. My experience was good in that I finally had a diagnosis!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
05-21-2014, 04:51 PM   #3
LodgeLady
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Were you on any medication when you had the test done? My specialist might consider giving me this test but I am currently on Entocort. Don't know if that would effect the results.
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Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


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Lots of praying.....

05-21-2014, 04:55 PM   #4
alybaly402
 
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Ali29 did you have a colonoscopy before that? and what were your symptoms.
05-21-2014, 05:15 PM   #5
Ali29
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Yes, I had a colonoscopy/Upper GI a couple of months before that. I had severe D and nausea, and pain was becoming more frequent and it was becoming harder to function. Colonoscopy was clear but Upper GI showed inflammation in my stomach. I had been on Lialda, Zenpep, Entocort EC, carafate which didn't work or caused severe pain in my stomach. At the time of the Pill Cam - I was trying to continue the Cholestyramine but it was increasingly difficult from the bloating and pain that medication was causing.

If it wasn't for the Pill Cam, I don't know where I would be today because none of the other tests provided a conclusive diagnosis. I would push for it - maybe the small intestine is where your issues arise.

Not sure about the Entocort affecting the outcome but I'm sure someone on here or your GI might know. I had been on a lot of different meds and it did not affect my Pill Cam.
05-21-2014, 05:28 PM   #6
alybaly402
 
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Thank you so much
05-21-2014, 05:43 PM   #7
Ali29
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Your very welcome!
05-23-2014, 02:24 PM   #8
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Sup everyone, I'm 9 months in and still no diagnosis, but I'm seeing a second hi doc and wanted to ask about pill cam or mre....

Ali29 I did have a quick question if you don't mind, your story is veeeery similar to mine but...

Did you get an endoscopy done? Did they find something then by sight or by the biopsy? Or was the damage much further down when they did the pill cam?

My colonoscopy came back perfect but my endoscopy they saw my duodenum was flat.... Gluten / dairy free has helped a lot but I'm still with occassional symptoms and we'll my stools are just .... Weird. Little tmi but couldn't help but ask... Thanks
05-23-2014, 02:34 PM   #9
Bareket
 
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Hi EZ- Your symptoms are similar to my daughter's- she is getting an MRE, but I a pillcam would have been a good option too. Her colonoscopy was clear, her endoscopy showed duodenum inflammation and ulcers. The biopsies were negative for Crohn's though. We are getting an MRE to look at the small bowel to see if there is inflammation in there. Her symptoms are unclear but there is definitely something going on.

There is no such thing as TMI here, poop is a vital source if information! I am curious what your pillcam or MRE would show.
05-23-2014, 02:53 PM   #10
Ali29
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Yes, I did have an endoscopy which showed inflammation in my stomach and they did biopsies but my symptoms were still so bad and I was not getting any better on the meds so the next step the GI wanted to do was the Pill Cam. I'm not sure how far down the small intestine they saw blunted villi and inflammation but I it was higher up in the GI tract which was found only by the Pill Cam.

I also have bile acid malaborbtion so the damage/inflammation in the stomach could be caused by the acid sitting in there.

Hope that helps!
05-23-2014, 05:40 PM   #11
Saratay05
 
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Aly
Even after my colonoscopy and endoscopy following two emergency bowel resections the docs didn't know what was wrong. Finally after blood tests showed iron anemia and vitamin D anemia the GI suggested the pill cam. Sure enough they found severe crohns ulcerations in my mid small bowel. No other test I had showed anything. MRE is also a good test but insurance companies don't like to pay for those without demonstrated disease (I've since had one of these too since initial diagnosis). The doc cautioned about doing another capsule study if there are strictures as the pill cam can get stuck.
I was happy to have a diagnosis and to hear I wasn't crazy with all these unexplained symptoms and pain.
Good luck to you
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Currently: hoping this is remission
Diagnosed with Crohn's 2012 after two bowel resections, one involving a perforation and peritonitis.
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Last edited by Saratay05; 05-23-2014 at 06:14 PM. Reason: Misspelling
05-24-2014, 10:04 AM   #12
ezgoindude
 
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OMG Saratay I would really but relieved but super p!ssed at the same time. Couldn't figure it out after a resection?!? Well that's making more since, after 9 months the best my previous GI could conjure is maybe non celiac gluten intolerance, and to keep a food journal....geeesh thanks.

Thank you Ali thank makes better since with the malabsorption since i've noticed if I take digestive enzymes the "D" would only get worse. Surpisingly PPIs can irritate the system too, so I'm "lucky" in that I don't take either for now.

Yea my appt with my new gastro is June 17th if I remember....considering colonoscopy, endoscopy, h pylori, and thyroid are ok my next push is imaging. I'm going to assume that won't happen until July, so I'm always curious to ask those who had imaging already done.
05-24-2014, 11:05 AM   #13
Saratay05
 
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Ali29: my biopsies were also clear. Capsule was the only thing that found cause of all this pain.

Yes, ezgoin, I was pissed! There were a lot of assumptions made about why I had the resections. They thought the first was a cecal bascule or volvulus. And the second they thought was at the staple line of the old repair. I'm sure now that there was crohns at work the whole time. There had to be a reason for the bowel tissue to be dying and perforate the way it did.

Always remember you must be your own patient advocate for your treatment. I know I'd like to think the docs always do whatever is necessary to diagnose and treat but sadly that just isn't the case. If I had listened to them after the colonoscopy and endoscopy I never would've found out what was really wrong. Scary to think what could've happened if I hadn't gotten the medication started when I did.

Next stop for me is an IBD center with a Crohn's specialist (not just another GI.) In a flare again and hoping to get into a trial or change up my meds.
05-24-2014, 11:40 AM   #14
Ali29
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My GI has also put me on digestive enzymes - they are not working at all! I keep doing research and bring them to my GI's attention. He says he has had the books out on me. Apparently, I have one of those cases that are difficult with all the layering of issues.

Good luck to you all!!
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