Hard to Swallow -- of capsules, catheters and insurance denials

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

Goodbye Prednisone! Again.

I’m happy to say that the steroids are in the back of the medicine cupboard. My last dose was about a week ago. In the past year, I haven’t tapered down below 10 mg daily without a small-bowel obstruction showing up. This time, though on most days I feel a familiar warning twinge if I stray from liquids or extra-squishy food, I haven’t had to resort to the Prednisone.

Prednisone -- It looks so innocent!

 Fingers crossed and lots of prayers!

Except now I remember the other problems the Prednisone was hiding. Like joint pain. I can’t think of one joint that hasn’t surprised me with shooting, stop-me-in-my-tracks kind of pain while I was doing something simple. Like pushing the clutch pedal to change gears in our Corolla. Or lifting a grocery bag. Or holding a cup. Or climbing stairs.

 Take ibuprofen, you say? Allergic to it. Bummer. Tylenol helps a little. Lortab helps, but I don't use it often, because if it's side effects. And I can't take it while working.

Oh, and the shingles rash, which had faded to slightly discolored scars on my right arm?  Itching again – then hurting when I absent-mindedly scratch. No fluid-filled bumps, though. So it's not a new infection. I’m guessing that without the steroids, the rash would have been red, itchy and painful since May instead of fading halfway through June.

Pretty typically, people who have one autoimmune problem have other such problems as well. Like asthma – got it! And rheumatoid arthritis – got it! And Crohn’s Disease – got it!

To make things just a little more challenging, my primary care physician changed his practice to pediatrics and urgent care only. So, unless I plan to just show up in the urgent-care clinic when he’s there, I have to find a new doctor. 

Does anyone know a great Salt-Lake area family-practice physician with an interest in autoimmune disease or a specialist in autoimmune diseases?

Meanwhile, my gastroenterologist, Dr. Cutler, wants to get to the bottom of what’s happening with my Crohn's Disease. 

More on that next time. 

In a nutshell, my insurance won't pay for the procedure Dr. Cutler wants me to have. So I cancelled, for the second time, my appointment for the test. And I’m awaiting an explanation from Dr. Cutler of the rationale for the test he wants to replace it with.

Sigh. I’d like to find out what keeps blocking my small intestine, and if there is a solution other than wicked Prednisone. I’ll let you know what Dr. Cutler, or more likely his MA, says.   

Meanwhile, be as happy and as well as you can be!

Take care,

Beth 

Sleeping Pills Make Me Stupid

I am swearing off Zolpidem (generic form of the sleeping pill, Ambien), except in extreme, dire, temporary circumstances.

A troublesome side effect of Prednisone is insomnia. I periodically take Prednisone to prevent, and sometimes resolve small bowel obstructions caused by my Crohn's disease. Some nights, after sleep eludes me for two hours or more, I get up to read. And sometimes I am still up when morning arrives.  After few nights like that, each followed by a day of chugging caffeine-laced Crystal Lite and de-fizzed Diet Coke to stay alert at my desk, it just gets worse. And more miserable.

So I started taking Zolpidem if I was still awake after an hour, or if the night before had been an all-nighter.

But no matter what the literature says or what anyone tells me, following day or two are laced with brain fog.

 The first few days of our France vacation complicated the insomnia further by jumping the time of day ahead by 8 hours. And I wanted to sleep at night so I wouldn't doze off in the day and miss France.

So on night #2, I got back up out of bed after trying unsuccessfully for a couple of hours to fall asleep. I took a Zolpidem and settled down with my IPad to wait for the sleeping pill to kick in.

I put some eggs on the stove to hard-boil for morning, and made myself a warm vanilla instant breakfast, to attack sleeplessness from the L-tryptophan angle as well. Next thing I remember is spilling my warm drink on my pajamas as I was dozing off. So I went to bed.

When my alarm woke me a couple of hours later, the eggs were still in the pan (Thankfully, the stove was turned off!), a full cup of cool milk was in the dish cupboard (weird!), and the splashes from the warm-milk spill waited under the kitchen table for me to tackle with a wet rag.

Yikes!

I doubled my melatonin dose and swore off Zolpidem. If I let there be a next time, things could end so much worse. I am not willing to risk that.

I have been sleeping better at night (most of the time) and feeling better in the morning. And, I think my memory and concentration are better. I don't know if that's because I am sleeping better, or because I don't have the forgetfulness that can be a side effect of Zolpidem.

But it's better. And I'm grateful.