Do I need to get a capsule endoscopy?

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Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/23/2008 6:04 PM (GMT -7)   
I was diagnosed with CD in January, after a colonoscopy showed an inflamed ileum typical for CD.  The colonoscopy showed no damage to the colon, just the ileum.  I also had a "small bowel series", drinking the dreaded barium.  No obstructions or ulcerations could be seen.  The upper endoscopy didn't show anything either.  But I still have pains in what feels like the "stomach" or perhaps the small intestine.  Cramping and stabbing pains.  My GI tried to get pre approval for a capsule endoscopy, but the insurance company wouldn't give it, saying it is "experimental" for anything except a certain situation, I forget what, it doesn't apply to me.  Their line was, "you don't need it to diagnose Crohn's, we'll accept your diagnosis of Crohn's".  He said it's not even worth appealing, they never approve it anyway.
 
Should I pay the $1200 myself for the test?  Could it find something that the SBS didn't? 
 
GI only gave me 5ASA.  He said if that doesn't work, he'll put me on something more systemic, which I prefer not to have, because of the side effects.  From what I understand, 5ASA only works on the ileum anyway. Or is that wrong?
 
In the meantime, I am taking fish oil and other anti inflammatory herbs and vitamins.  I just want to be sure I'm not ignoring something that should be taken care of.    inflammation of the small intestine is associated with increased risk of lymphoma.

FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 5/23/2008 6:16 PM (GMT -7)   
I think it is always worth appealing. Mine was covered by insurance and my doc wrote that my diagnosis was uncertain at the time and he didn't want to medicate me unnecessarily etc. If your insurance wont pay for it I am not sure it is worth paying for out of pocket. Your treatment is probably going to be similar no matter what. Your doc is either going to be top down or bottom up and we'll try you on the ASAs and only go up if you don't improve. Seeing the crohns may not change that. I recently refused an endoscopy b/c my reflux had become worse. My doc changed my meds but was going to test to see if I had an ulcer. I asked what he would do if I did have an ulcer. He would prescribe the same med he was prescribing for the acid. I figued I would skip the test then if the treatment was the same either way. Try an appeal and if it fails think long and hard before paying for the CE.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/23/2008 6:52 PM (GMT -7)   
Illy,
I agree with Fitzy. I would ask your doctor to appeal the insurance decision. If it is denied a second time, then I would think hard about paying for the test. If you have ulceration in the small bowel, then your treatment would need to be "amped" up. Your symptoms are indicating that you have something going on that the medication is not helping. There are other medications, like Entocort, that work well on CD of the TI. It is a more topical med like the 5ASAs and is usually tolerated well. Usually, it takes sometime and experimenting to find the right mix of meds that helps. Everyone is so different, that there is no one size fits all type of plan in CD. Good luck and let us know what you decide.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 5/23/2008 6:56 PM (GMT -7)   
the first few months are so hard. I sympathize with what you are going through. that is where my pain is and they have never really found anything there except adhesions from previous surgeries. I agree you should appeal and see what happens. don't pay yet as I have found insurance companies often say no until someone pushes them a bit. take care, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 5/23/2008 10:27 PM (GMT -7)   
I wouldn't self-pay. But I would ask my doctor about a CT Enterography. Mayo Clinic is preferring them to the SBFT now. I understand your wanting to KNOW the cause of your symptoms in an area other than what was found at the TI/ICV area. I'm the same way. Even if knowing causes no change in treatment methods I feel better when I KNOW.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/24/2008 1:48 AM (GMT -7)   
Thanks everyone.   I think he did do an automatic-style appeal and they said no.  I will ask him about the CT enterography (more barium, eeesh!).   But you also make a good point about the medication being the same.  Actually, he is saying well, it doesn't matter what you have, just take your 5ASA and if there's still pain, I'll give you something stronger like mercaptopurine or methotextrate.  I will also ask about Entocort, but I think it has more side effects than 5ASA, does anyone know?
 
 It took  so long to get diagnosed, there were clear signs that were overlooked, I kept telling them I thought I had an autoimmune problem, 6 doctors missed it, no one can tell me  why the severe pain only started after I got food poisoning 3 years ago.
  
as CrohnieToo said, I just want to KNOW.  because truthfully, I just don't trust them to have the full picture.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/24/2008 7:42 AM (GMT -7)   
the hardest thing is that some of us never KNOW. I was postively diagnosed and then undiagnosed and then maybe diagnosed...and my story isn't so rare. I am lucky to have fab insurance and have all the tests many times, but the tests are so hard on me that I gave up on then for the time being and have focused on diet. I am not saying stop searching, just know that it can be a long process and I agree....eeesh barium!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/24/2008 4:48 PM (GMT -7)   
Hi, Yogaprof, what's your diet?  I find I feel worse after sugar, wheat, and alcohol so I have to avoid them ( sad ).  and I used to loooove desserts.  and I feel worse after most fruits and vegetables.  have you ever tried a liquid diet?

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/24/2008 5:57 PM (GMT -7)   
I had tests done by a naturapath and found a high gluten intolerance, so I have been off gluten for 4 months and am so much better it is amazing. I was tested for celiac, but it came back negative, but I am so thrilled to have done this. I eat NO gluten and I have much less pain, a great appetite, and look 100% better. interestingly, for the two years I was really sick I couldn't eat any high res food--salads, fresh fruits and veggies, high fiber grains. now I can eat it all just fine. :)
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/24/2008 6:23 PM (GMT -7)   

wow that's interesting b/c 20 yrs ago a chiropractor gave me a blood test that showed I was allergic to wheat. I didn't take it seriously and kept eating everything for years until last year.

all I know is I feel worse if I eat wheat pasta or bread or cake or cookies.  so that's what I'm avoiding.  I also tested neg for celiac by blood test and stool test.  weird.  maybe someday I'll be able to eat more than meat and beans.

sugar definitely makes me feel worse.  not you?


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/24/2008 10:08 PM (GMT -7)   
no, I am fine with sugar (thank goodness!) but gluten is hidden lots of places and I avoid it all. that keeps a lot of sugar out, actually, because I can't eat any baked goods unless I make them myself with rice flour. you might try going totally off wheat, even things like soy sauce, and see what happens.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/25/2008 4:10 AM (GMT -7)   
you can have Tamari instead of soy sauce, which is made with all soy, no wheat.  it's pretty easy to find in health food stores.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/25/2008 7:50 AM (GMT -7)   
I even have a bottle of tamari sauce that I left at my favorite sushi place with my name on it. it is yummy stuff!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/25/2008 6:31 PM (GMT -7)   
you are very brave to eat sushi!  one of those things I don't risk.
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