None of the diagnostic tests I’ve had since my bowel
resection in 2004 show any narrowing inside my small intestine, let alone an
inflamed stricture where a small-bowel obstruction would likely form. Since it
doesn’t make sense that the small-bowel obstructions that come on so frequently
would respond to steroid therapy, resolving, as it has each time so far, after
a day or two on high-dose steroids. Dr.
Cutler, my gastroenterologist, wants a capsule endoscopy test that would show 3-D,
color photos taken throughout my small intestine. Here’s an illustration about
capsule endoscopy from SJGI.com:
I was a bit hesitant to agree, since the last time I
swallowed an endoscopy capsule, it photographed another one just hanging out in
there -- one I’d swallowed two months earlier as part of a study at the
University of Utah Medical Center. The result? Surgery to remove 50 cm of
diseased bowel, too scarred and narrowed to let the capsules pass naturally.
What if the next capsule I swallow gets trapped, too?
Now there’s a dissolving capsule the same size as the
endoscopy capsule that shows up on X-rays. I could swallow that first to see if
it gets stuck. An x-ray and probably physical symptoms alert if it can’t pass
all the way through. The capsule dissolves 30 hours after swallowed. It seems like a good idea to me. Even if it
does cause some pain before dissolving completely, the X-ray would give
long-sought information about the location and nature of the stricture. It’s
not covered by insurance yet. But the University of Utah’s endoscopy department
received some free samples from the manufacturer and set aside one for me.
Sounds promising, right?
But Anthem Blue Cross denied prior authorization for the
procedure because:
“You have been diagnosed with Crohn’s disease.
This test is investigational and not medically necessary for testing and
management of Crohn’s disease if there is a suspected or known narrowing in the
small intestine (stricture) as there is in your case. Medical studies we have
seen do to show that a capsule test is better than other ways of looking at the
intestines for people with your condition.”
The denial letter offers multiple suggestions of other
tests, most of which I’ve had, revealing no helpful information. It also says
that my doctor can call a “Physician Reviewer” at Anthem UM Services, Inc. and
have a peer-to-peer conversation . . . to discuss determinations based upon
medical appropriateness.”
Apparently, the peer-to-peer conversation didn’t change
anything. The University of Utah endoscopy lab left a voice message that
because my insurance denied the request to pay for a capsule endoscopy, I would
need to pay ½ the cost of the procedure up front and it would be a private-pay
procedure. I called Dr. Cutler’s office and left a voice message for the
medical assistant, asking if the peer-to-peer with Anthem did happen, and
asking for Dr. Cutler’s suggestions, given the outcome.
When Dr. Cutler’s MA called back, she confirmed the
conversation between Dr. Cutler and Anthem’s physician. She also said Dr. Cutler would like me to
have an enteroclysis. I asked her to describe the procedure. But she couldn’t
explain the difference between an enteroclysis and the other tests I’ve already
had. She encouraged me to set it up myself with a hospital in my insurance
plan, and that if I had any questions I am welcome to make another appointment
to come in and discuss it with Dr. Cutler. I asked her to spell the procedure’s
name so I could research it myself.
Basically, it’s a lot like other CT and barium radiological tests,
except that the doctor performing the enteroclysis inserts a tube through the
patient’s nose, down the throat, past the stomach and into the small intestine.
The tube infuses barium fluid, to coat the small bowel’s interior lumen, making
it visible in CT images, and methylcellulose, to distend the bowel and
straighten loops to improve the accuracy of the CT images, hasten the barium’s
transit through the small bowel. The patient must be awake for the procedure to
change positions as needed to help capture the most helpful images by CT scan.
This picture of the catheter is from http://www.radiographicceu.com/article30.html.
I need to call Dr. Cutler’s office to make an appointment,
but also to request a call back from the doctor himself to explain the
rationale for having an enteroclysis (which we haven’t discussed before) as
opposed to a double-balloon endoscopy (which he has told me may not reach the
tattoo Dr. Radwin left when he approached from the bottom up), but from the top
this time.
Information I looked up about the enteroclysis said the
procedure is “uncomfortable.” This is code for painful and scary. I’ve put off
this next phone call long enough. I’ll try in the morning. Sigh.
Sometimes I wish I were normal – whatever that is. I do want
to be as healthy as I can be. I keep praying for this and trying to at least
act like Crohn’s Disease doesn’t affect every day of my life. Maybe someday
that will be true.
Until next time,
Beth
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