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Crohn's Disease Forum » Tests for IBD » Has The Pill Cam Positively Diagnosed Your Crohn's ?


07-13-2014, 02:28 PM   #1
LodgeLady
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Has The Pill Cam Positively Diagnosed Your Crohn's ?

Well 3 days totally off of Entocort and my symptoms are returning. Major cramping nausea and "D" today. If this persists I will be getting a pill cam.

So far what few labs have come back abnormal, are not bad enough according to my specialist. So despite feeling GREAT on Entocort, I am not officially diagnosed Crohn's.

Has anyone had the pill cam positively diagnose you for Crohn's where other tests were inconclusive?


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07-13-2014, 04:18 PM   #2
Ali29
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Yes, the Pillcam found Crohn's and blunted villi in the small intestine. Prior to that, all they could diagnose was Bile Acid Malabsorbtion and Fat malabsorption from Colonoscopy and Upper GI. Thank goodness my GI performed the test.

Good Luck!
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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.
07-13-2014, 04:34 PM   #3
LodgeLady
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This is my last resort. Otherwise I will be destined to the IBS diagnosis unless this GI finds some ulcers or other visual defects or inflammation on biopsy. My anemia, CRP, and last biopsy are not bad enough according to a specialist despite my weight loss cramping and D.But my symptoms have returned now that I'm off Entocort. This will be the last test he runs.
07-13-2014, 05:06 PM   #4
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Pill cam is a great idea, good for you that the doctor let you use that option. Good luck.
07-13-2014, 09:54 PM   #5
lisadc1
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Yes, the Pill Cam was my third test, and it definitely found the crohns. Prayers for answers for you!
07-13-2014, 11:53 PM   #6
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I had the pill cam test years ago and what they told me was that it did help with diagnosis but was one piece of the puzzle. It can show ulceration etc but will not show the degree of the thickening of the intestine wall, unless there is extreme blockage there. It took an additional upper GI and endoscopy for my diagnosis. Good luck
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07-14-2014, 08:27 PM   #7
Cosmojo
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Yup pill camera is what really sees my disease! I was officially diagnosed with a colonoscopy but they only saw a little disease, like 2 or 3 ulcers and scar tissue and a little narrow- with a pill camera they saw over 30 ulcers plus all the other stuff! Plus its totally painless, pretty much the coolest diagnostic tool ever
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Humira weekly- didn't work
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Prednisone & all steroids- I get manic episodes so I can't take
Pentasa- didn't work
Imuran- not currently using but did seem to work
MTX- stopped, my kidneys were getting lots of infections

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07-21-2014, 07:01 PM   #8
LodgeLady
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Prayers for me please. Will be getting a pill cam in August.


07-24-2014, 02:10 AM   #9
Patricia56
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I suggest that you seek a 2nd opinion. Your description sounds like you are working with a doctor who is treating the labs - not the whole person. A pattern of abnormal labs along with symptoms should be sufficient to strongly suggest a diagnosis. Just because your ESR is only 50 (or whatever) shouldn't be a barrier to your being diagnosed when everything is taken into account.

The pill cam is a very useful tool. It has its limits however. It can only record what the camera is pointing at - it misses everything else. It can get stuck in one spot for hours (hopefully not permanently requiring surgery to remove it) while it races through other parts of the small bowel. Just because you have an unremarkable pill cam result doesn't mean you don't have CD.

Have they done an MRE? What were the results? Have they done a fecal calprotectin test to check for inflammation?
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07-24-2014, 05:07 AM   #10
LodgeLady
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A year ago he did a stool sample. I have no idea what tests he ran. He has never mentioned that test.

I suggest that you seek a 2nd opinion. Your description sounds like you are working with a doctor who is treating the labs - not the whole person. A pattern of abnormal labs along with symptoms should be sufficient to strongly suggest a diagnosis. Just because your ESR is only 50 (or whatever) shouldn't be a barrier to your being diagnosed when everything is taken into account.

The pill cam is a very useful tool. It has its limits however. It can only record what the camera is pointing at - it misses everything else. It can get stuck in one spot for hours (hopefully not permanently requiring surgery to remove it) while it races through other parts of the small bowel. Just because you have an unremarkable pill cam result doesn't mean you don't have CD.

Have they done an MRE? What were the results? Have they done a fecal calprotectin test to check for inflammation?
07-24-2014, 06:05 AM   #11
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My husband was diagnosed last month with a pill cam. It showed crohns scarring and narrowing in an area that could not be seen with the colonoscopy or endo. They did not see any active ulcers; however he mentioned the camera does not spot every thing. They used the Prometheus test to confirm. Sadly his follow up is not till August 20th to discuss the next steps. He has no GI symptoms right now unless he eats gluten. Been gf for 4 years so that is not a problem generally unless we eat out. They were just looking for the cause of his anemia and 18 pound weight loss.
07-24-2014, 09:12 AM   #12
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I have had upper GI endo, colonoscopy and pill cam and none were able to see my affected area. It took an MRI for my Crohns to be diagnosed as it was so low near the end of the small intestines. The pill cam showed everything was normal but it did not make it all the way through and into my colon while recording.

If your test comes back normal I would request an MRI as it shows pretty much everything. I hope you get some answers soon.
07-24-2014, 10:10 AM   #13
Patricia56
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You would know if you had an MRE. It is an abdominal MRI. In most parts of the developed world it is now the standard of care, along with scopes and lab work, for diagnosing CD. SBFT's and CT scans are older technology that generally provides the same results but exposes the patient to high levels of radiation. Since CDers are already at increased risk of intestinal cancer, most doctors try to avoid using those tests now that a reliable alternative is available in most places.
07-24-2014, 10:31 AM   #14
If*
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Some have metal clamps in intestines and can not have MRI/MRE. Hence Magnetic.
As for the pill cam, they have a 'dummy' pill to help see if the cam will pass without possible problems, like getting stuck.
07-24-2014, 03:40 PM   #15
Patricia56
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Using a dummy pill does not guarantee good results. It strongly suggests that there will be no obstruction but that doesn't mean the pill cam won't get stuck for some time as it did with my son. It spent 4 hours in the same spot then raced through the rest of his small intestines showing very little because the passage was so rapid. One of the few clear pictures included a small bleeding ulcer but it could easily have missed that.

As I said it is a very useful tool. But it does not replace others. Cd can be hard to accurately diagnose and it usually requires multiple diagnostic tools to do so.
07-24-2014, 05:06 PM   #16
If*
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There are no guarantees on anything with CD - other then it sucks when your the one who actually has it and is experiencing the symptoms of having it.
The 'dummy pill' was created to 'help' see if a blockage is present since the 'dummy pill' can dissolve. Just an option ~ since most of us with CD like options.
some get a fast diag. some take time as long as 3 years or more - it is no reflection on how ill, how much damage, etc. It can be difficult and can take several test or just 1.
07-24-2014, 05:38 PM   #17
LodgeLady
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I had a CT scan. I have not had an MRI. What is the promethius test? I know a test for ANA and P-ANA were done ( hope I spelled those right). However that was done after 4 mos of heavy duty Pred, Pentasa, and 6 weeks of Humira. Maybe the drugs were working but my gallbladder attack and subsequent removal masked the benefits?
07-24-2014, 05:39 PM   #18
LodgeLady
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Since the diagnosis is so hard to determine, why the reluctance to try some IBD drugs to see if they work?
07-24-2014, 05:58 PM   #19
If*
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Hi LodgeLady, I am not a Dr. (LOL) but a hunch would be it is best to have a actual diagnosis.
Promethius is a blood test - you can research it online.
From experience as a IBDer
I am surprised a ct didn't show something?? I hope the pill cam will help you figure things out. The Dr.'s only have so many test and if they can't find it - I wouldn't push for meds. It would be like treating someone for (fill in blank) who does not have it. Approach with caution.
Steroids are prescribed for many many many reasons of inflammation.
I don't think the gallbladder could mask things?? I had mine out too and the symptoms are very distinguishable from IBD. However nausea can linger for sometime after removal.

I am sure you must be frustrated, but please remember if you have IBD (most likely) your body will eventually present a symptom that can not be ignored. Hang tight. Not the best situation but eh.

Hope you get some info soon.
07-24-2014, 06:41 PM   #20
LodgeLady
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Yeah I understand you don't want to go on meds you don't need. Yes agree the symptoms I had ( especially this last weekend) should not be occurring if it was all gall bladder symptoms, as I no longer have it!! I'm hoping the Pentasa will help while all this testing is going on. I'm staying off of the steroids. Can't hardly get off them once started. I will wither in pain before starting them again.


07-24-2014, 06:48 PM   #21
LodgeLady
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Well initially a CT did show something. I was totally backed up with stool from the rectum all the way to small intestine!! I had to use laxatives and Mirilax to move it all. I guess you would call it an impaction. I was in so much pain. Funny thing is I was going! Anyway I believe this was the start of a Crohn's constipation although he didn't call it that. Then colitis at the TE on biopsy. Then increased CRP. These are the only tests I'm aware coming back as a problem. Again my anemia was not bad enough. My inflammation was not bad enough. Everyone is Vit D deficient. Inflammed gall bladder I had to have out ASAP. So that's why they are blaming it on the GB with IBS.


07-25-2014, 02:01 AM   #22
Patricia56
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Do you have/get copies of all your lab work, procedure reports and pathology reports? If not, I suggest you ask for those from your current doctor and begin always collecting them when you have something done. Then you will know precisely what the results were.

I really think you need a 2nd opinion, the sooner the better. You might want to do that before you do any more testing with this doctor as the 2nd opinion may want to do some testing too. Your current doctor should help you arrange a 2nd opinion including forwarding all the test results and reports/imaging.
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