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.

Staving off Obstruction in Paris

Yesterday we walked through the open market in he Latin Quarter, ate lunch at a Vietnamese sidewalk cafe, toured the crypt at the Parthenon, visited the church of Saint Sulpice, enjoyed the expansive gardens at Luxembourg square, tried to see the catacombs (but the line was so long, we couldn't get in before closing), took in the Paris Mideivel Museum, explored the immense cemetery in the center of Paris, and viewed Paris from 59 stories up, on top of the Montparnasse building. Whew! It was great!

By the end of the day, we were pretty hammered. So we came back to the apartment and had take-away kebab from a place down the street for dinner while we relaxed with our feet up.

My gut was relatively calm through the day. I sort of babied it -- drank lots of water, chose simple, low-fat foods. That doesn't always make enough difference. But I was grateful for the blessing of it. Then, come the end of the day, I was more exhausted than I thought I was. I felt it when I tried to go to sleep for the night.

Generally, when I'm on lots of Prednisone, as I am now, sleep is rare. So I've just been taking 1/2 to 1 Zolpidem (Ambien) at night so I can sleep. But it also caries its own side effects. So last night, I thought I'd try to sleep without it. After laying there for a couple of hours, though, It became clear that sleep wasn't on its way. In fact other issues started to surface. That familiar, biting, intense pain in my right-upper quadrant that generally means a small bowel obstruction is forming started up. At first it was subtle, as usual, and I tried to ignore it. After all, every other part of my body was achy. Why shouldn't that also hurt?

I'd been thirsty all day, too. But that's not surprising, given we walked who-knows-how-many miles. But once I'd re-hydrated and lay down for the night, I'd expect that to abate. It intensified instead. Sigh

So, I slid my bags full of pills (two gallon-sized ziploc bags, if you can believe that!) out of the suit case under my bed and popped 40 mg of Prednisone to complement the 30 mg I took yesterday morning. That should quell it. I've got other symptom-control meds (liquid Lortab, bisocodyl sodium laxative, loperamide antidiarrheal, ondanstetron/Zofran) I'll take with me today and hope for the best. I don't want to miss anything! And thankfully, I was lying awake to notice it coming on. The pain is gone again this morning, and my bowels moved in a relatively normal way this morning.

Fingers crossed and lots of prayers!

Trying to be normal in Paris,

Beth :-)

Yuck Alert: Don't read on if potty talk bothers you.

Remember how normal I was feeling on Monday?

I should learn by now that saying so dooms me to a different fate.

Oops!

Tuesday started out OK at first. The morning was great fun, and I was feeling so smugly normal, I rolled the dice at lunch and had something really French -- a chicken and cheese crepe. Even though I picked off a great deal of the cheese, it was still too rich for me. It sent me running to the toilette in the restaurant and then to take two antidiarrheal tablets.

Then, 15 minutes later, while walking through the flower market a few blocks away, fearing I wouldn't be able to hold it long enough to find a closer rest room nearer, I ran back to the restaurant for another go. Then, while touring the crypt outside of the Cathedral of Notre Dame, a sign warning "no toilettes" sent me into a panicking search for one. If I had been male =-- or at least been dressed like one, I'd have not wait to reach a toilet. But the women's queue was 15 - 20 minutes long. They are like that in lots of places here.

 

Note to self: French cheese and crepes are too rich for me. Don't eat them!

Feeling pretty dehydrated after that, I stayed on full, low-fat liquids until dinner the next night.

Later that evening while taking in the si†es where some beautiful, historic buildings adorn the streets, I tripped over a raised man hole (or whatever they call those here) and fell on my left wrist and hip. Fortunately (thank heaven, of course!) I didn't break anything, except my pride. I got a pretty bruise on my wrist that caught me, but it's already fading. I guess the dehydration that comes with the whole diarrhea attach thing repeated over and over through a day was too much to expect my to have sure footing as well while distracting my attention away from walking. tp look up at flower boxes on window sills and beautifully guilded balcony rails.

Dave and the kids were supportive and understanding, though. They made sure I got some juice right away, and made their own dinner when we returned to the apartment. I stayed on full liquids until dinner the next night, and did a lot better when I introduced table food at dinner the next night.

I am more grateful than ever for the wipes we brought with us and the washing machine in the apar†ment where we are staying. And for ShaNae sharing her panty shields with me.

Wednesday was amazing, too. And because of  getting stuck in such a long potty queue outside of Notre Dame, I was always on the lookout for a shorter line. Here's a secret if you go. The rest rooms that didn't have lines are in the Richard Reichart area near the scuplture gardens in the Louvre. Or, dress and and act like a man and march forward to the front of the non-existent line and do what you need to do. Your wife/girlfriend/daughter will still be awaiting her turn. Some of us revolted at Versailles today. With 15 or 20 women in line, we saw men, one at a time, without waiting, march into empty cubicles within plain site, come out, wash their hands and leave -- all before the women's line moved any closer to our goal. So some of us left the women's line and used the men's stalls. No harm done (but lots of relief received) as there were still no men waiting for a turn when we exited. They need a sticker they can put over the sign on the men's room to switch its gender when the women's room is overflowing.

Last night, I also introduced Canasa suppositories daily again. It's like Pentasa--another form of Mesalamine, that's supposed to quell the Crohn's inflammation in the small intestine. The suppository seems to also help the bowel control its contents until appropriate times).

 

Today I've been doing much better. The trick is to stay hydrated, which, of course, presents a problem where rest rooms are few and far between, and when they are so popular! The two restaurants where I didn't find lines was in the grove outside in the gardens. I only had to wait for one person. And the bathroom was relatively clean (with the exception of the toilet-paper-wasting project someone seemed to create in the corner of the cubicle (one of two) that I chose.

That's enough for now. Enjoy the photos. We are being truly blessed with comfort, good company, safety, and memories precious beyond description. What an amazing experience †o share with ShaNae, Zack & Clara!

I love them all so much! and thank Father in heaven for the time together. What a charmed, dream vacation! And, of course, it's perfect to distract me and Dave from these last few days of waiting for Samuel's release from his mission. We will pick him up on Tuesday morning! That doesn't seem any more real than any of the res† of i†. But it all is! Amazing!

Well, better sleep a while. The Prednisone is starting †ø give way †o †he melatonin and amytriptilline's sleepy effect. Being well-rested tomorrow will be a good thing!

Take care of yourself. And start learning French so you can teach it to me when I get back!

Au Revoir!

Beth

Paris

Our first full day in Paris! It still doesn't seem real. But it is! And it's wonderful, of course. Today we spent the day at the Louvre. We saw SO MANY priceless, breath-taking things, but it's such a tiny part of all that is there. I hope the people who live nearby take the opportunity to go often. I don't think you could see everything if you went every day for a year! I am grateful my guts are being calmer than usual. Prednisone has its price. But being able to enjoy the Louvre with my husband Dave, and with my son and daughter-in-law, Zack and ShaNae, and our granddaughter, Clara -- Priceless! The Lord is blessing me and I am grateful. Every toilette at the Louvre (and there aren't many) had a LONG line. The cafe where we lunched had a line, but not as long. If I'd been in trouble, many people would have suffered (or at least would have been sorry to be close to where I was). But that didn't happen. Thankfully, the biggest challenge was staying hydrated. The Louvre has no apparent (even after what I consider a thorough search for) drinking water fountains. And the only place they sell bottled water (for >$3 per .5L bottle) is near the entrance -- a good 15-minute walk from where Dave and I left ShaNae and Zack taking care of Clara while we did a water run. I did bring my own water, but I drank it before noon, of course. And found no place to re-fill it. I have to say the Louvre is not very sensitive to human needs. Besides the dearth of rest rooms and drinking water, the stairs everywhere make much of the museum inaccessible to wheelchairs (We only saw 2). The stroller was challenge enough, as Clara's diligent parents hefted it up and down stairs. The stroller did, however, get us to the front of a line on the way in. :-) At lunch, I ordered vegetable soup and hard-boiled eggs. And for dinner, some kebab with bread sounded good. That sounded safe. Apparently it was. I'm still doing well tonight. I have to credit divine intervention, though. Even though I carefully planned and prepared ahead of time my meds for the day, I somehow only brought the symprom-control, emergency stuff like anti-diarrheal and pain killer meds. Non of the maintenance stuff. I still can't find them in the apartment tonight. I honestly have no idea what I did with them. But it's all good. I have bottles and bottles of all I need in my suitcase, and I promise myself not to leave them behind again. Tomorrow, we're touring the city from a boat on the Seine and visiting the Isle de Cite. Can't wait! If I can figure out how to get some photos from my Adroid to my iPad later in the week, I'll post them. I'm not getting much cooperation between these two devicies so far. Maybe I'm just tired. Good night! Smiling in Paris, Beth :-)

Counting Blessings

After 40 hours awake, last night sleep came again. Woohoo!

By yesterday afternoon, I was getting a bit cranky, clumsy and critical. Dropping and spilling things.  Losing track of conversations (even worse than usual J). Easily irritated, and, I’m sure, irritating to others (poor Dave). Feeling lazy and tired, but not sleepy. Generally bummed out.

Sweet Dave took me to get a yummy turkey sandwich for lunch at the Honey baked Ham store (no lettuce or tomatoes, please), and our daughter and her hubby, Megan and Jeff, came over for takeout pizza at dinnertime. So that was good.

It got me thinking about God’s tender mercies – counting my blessings.

My family (except Samuel in France)
 at Megan's & Jeff's wedding last October.

Here are 10 things I’m grateful for:

1.     Family: I love, love, LOVE my family members, both here and watching/helping from the other side. So much love and support. Dave, the kids, their spouses and our first grandchild – priceless!

2.     Christ: He shoulders my every burden, has already paid every debt, righted every wrong. Sometimes I just forget.

3.     Education: It is forever ongoing. I’m grateful that my parents steered me to college, for the degrees I earned, and for all I keep learning, both professionally and personally.

4.     Senses: Vision, touch, smell, hearing, taste. Such joyful, beautiful ways to connect with people and the world.

5.     Memories: Bring smiles & comfort, teach lessons when I let them (sometimes again and again).

6.     Music: Lifts my spirit. Lets me express and feel things that have no words.

7.     Mobility: Walking, flight, cars, travel to be with loved ones, see new things.

8.     Laughter: Better than a good cry. Dave makes me laugh every day.

9.     Friends: I’m surrounded, thank heaven, by so much love!

My before-breakfast meds.
Colorful, right?!

10. Medicine: The side effects can suck, but medication keeps me here to enjoy other blessings, can relieve pain and suffering; some even cure disease!

Me today -- 25 pounds heavier
than in my mug shot on the right.
Thanks Prednisone!

And counting . . .

Take care,

Beth