Denied! Can't get Humira to see if it works. Sigh.

In the six months since I last posted, a lot has changed. I'll get to that in my next post.

But today I'm complaining about my insurance company's (Anthem Blue Cross) ineptitude at keeping its part of the deal after we've paid premiums non-stop.

I shouldn't be surprised, since Anthem Blue Cross is beholden to stockholders before patients. Private business, in my opinion, is NOT always the best way to get things done, especially when it comes to health issues.

Here's what happened:

In November, my new gastroenterologist (Yes, I switched to Kathy Peterson at the U.) started me on Humira. It's a biological medication to decrease inflammation that has been successful to treat some people's Crohn's disease.

I'm more than a month late taking it, though, because I can't get the medication, even though my policy says it's covered. By the way, Humira is so expensive that just the co-pay is $100.

After filling the prescription a couple of times at the University Medical Center pharmacy, I went again on Friday, December 13th, the day it was due, to get a refill. I was supposed to stay on schedule so we can tell if it helps or not. The chance of it causing problems, or simply not working, increases if I don't take it as prescribed.

I'd had no trouble filling the prescription the two or three times I'd bought it at the U, so I didn't realize there'd be a problem that day.

Boy was I wrong!

The insurance denied the claim when the the pharmacy tried to get payment, because after a couple of refills at a local pharmacy, it's only covered when it comes from a "specialty pharmacy," called Acredo. After three hours either talking with people at Acredo, the specialty pharmacy, or having my doctor's office or the University pharmacy techs talk with people at Acredo and the insurance company, I left without the medication.

So after the weekend, I called Acredo again to set up home delivery of the Humira.

The day it was supposed to come, instead I got a robo-call stating that I needed to call Acredo because there may be a delay in shipping my medication. So I called. The tech that answered couldn't tell me why it was cancelled, only that I needed to reschedule the delivery. So I did.

Guess what happened the day it was supposed to come?

Good guess! Another robo-call!

This has happened repeatedly since then. Nobody can tell me why it keeps getting cancelled, only that the pharmacist, or somebody involved with filling the prescription, is the one who keeps cancelling it. The person I spoke with yesterday guessed that maybe it's back-ordered.

Tomorrow, I'm calling my insurance company with my story to ask again if they'll approve coverage at a local pharmacy. And I'll contact Dr. Peterson to see what I should do next.

Sigh. I wish private enterprise wouldn't get between patients and treatment.

Delayed dilation, obstruction: a nudge toward Humira

Humira or Remicade? That was the question!

Oh, and an urgent reminder that I needed to decide soon.

Azathioprine

At my follow-up appointment with Dr. Radwin, he suggested that maybe Azathioprine (generic Imuran) is not working for me as well as it should, since Crohn’s lesions are active near the stricture he dilated for the second time on May 21.

I’ve used Remicade with some symptom relief, but it was about a decade ago. Insurance coverage wasn’t good. So I had doses less frequently than recommended, and eventually was priced out of the market by an insurance change or something like that. Unfortunately, that combination of actions has the potential to set me up for an allergic reaction to Remicade on any dose past the first one if I start using it again.

Another issue with Remicade, my research suggests that it requires Methotrexate as a companion to address arthritis at the same time. Two pernicious drugs. Hmmm.

Humira Injection Kit

And Remicade requires an IV infusion for each dose – a serious time suck.

Humira is injectable at home. I can do it myself. And it’s recommended for both Crohn’s Disease and rheumatoid arthritis. I'd love it if a new medication regimen addressed the inflammation in both my gut and my joints. I still need to find out about insurance coverage and logistics, but I phoned Dr. Cutler with my choice so he could get the ball rolling. (Er, I mean his MA could make all the calls, etc.) The ball is in my court now to find out where my insurance covers the lab tests needed to see if I qualify.

Anyway, meanwhile, I was scheduled for another double-balloon antegrade enteroscopy with jejunal dilation to re-dilate my stricture on July 9. But Dr. Radwin’s office called me the day before to cancel because the scope is broken. They said they thought it’d be fixed in a couple of weeks, and they would call me to reschedule then.

No word yet.

But, as Murphy’s Law would have it, the beginnings of a small-bowel-obstruction symptoms came on Tuesday, exactly one week after the  dilatation would have occurred that might have prevented it. Pain came in waves, intensifying through the afternoon. No gas or stool passed. Extreme thirst. Abdominal tightness progressing over time. The usual. 

I have a known stricture in my jejunum, which the repeated dilations are working to resolve. It acts up when the Crohn's Inflammation flares.

I started the  Prednisone (with Dr. Cutler's blessing, of course), Hydrocodone for pain, and lots of clear liquids that day. I added some Bisocodyl laxatives for good measure. And a long night's sleep. I was already using Pentasa, Canasa and Azathioprine.

I felt much better by morning. Rested and pain-free, and I could do what I'd planned to do that day without too much trouble. But it wasn't resolved. Nothing was passing through yet. I was still WAY thirsty, with a distended, tight abdomen. A stretchy-pants day.

Finally, this morning (Friday) it resolved in no uncertain terms!

Leaving my grocery cart at the check-out, I RAN to the restroom, grabbing a new package of incontinence pads from a strategically placed shelf by the restroom, chased out the embarrassed (male) worker ("Excuse me, ma'am, but . . .") who was clearly cleaning the restroom with "This is a real emergency" as I slammed the cubicle door. 

Glad I was wearing a small panty protector, I finished my business, slapped on a new pad, cleaned up, then purchased the now-opened incontinence pads. Fortunately, the checker has a good sense of humor. 

The upside is that I can advance from clear liquids only (which leave me feeling empty and even more caffeine-dependent than usual) to full liquids (you know, really mushy stuff, almost back to my regular diet of mushy stuff).

If nothing else, the symptoms were a not-so-gentle reminder to get busy figuring out which therapy to try next! Better get on the insurance web site and call Dr. Cutler back on Monday. Time for labs.

As for the obstruction symptoms – all’s well that ends well.

Take care! Eat my share of fresh summer veggies and un-peeled fresh fruit!

Another Day, Another Dilation

I was ready to chicken out of having another procedure to dilate the strictures in my small bowel. 

Antegrade, double-balloon
enteroscopy

I've been sticking to foods that won't get stuck. And the diarrhea didn't seem unmanageable. And the pain for partial obstructions was absent for a while. 

"Maybe I don't need another expensive, time-killing, foggy-head-making, invasive procedure," I thought. "Maybe I'll just cancel it and think about it again if it starts getting worse."

Then it happened again. The old, familiar, partial-obstruction pain as my small bowel tries to work through something that doesn't easily slide through the stricture. 

NO FAIR! I didn't splurge on any crunchy, yummy, fresh veggies. 

Sigh.

Endoscopy camera capsule retrieved from
my small intestine in February 2013.
Shown here with a quarter for size perspective.

So I kept the appointment. At noon Tuesday, May 21, I'll be checking in for an out-patient antegrade, double-balloon endoscopy for dilation of strictures. 

 

I know the strictures are still there, because they don't usually self-resolve. And they were holding hostage the endoscopy camera capsule, until the previous enteroscopy to retrieve it. Because the venture in January to both dilate strictures and retrieve the capsule was not successful, the doctor focused the February adventure on simply retrieving the capsule. And here's proof that he did.

He recommended that I return in April (OK, so I procrastinated) for stricture dilation, and then return for repeat dilations as needed. Apparently, he has some patients who get dilated a couple of times a year.

So, I'm wondering if dilation really works, since I'd just have to go back a couple of times a year for a repeat performance. But if I were symptom-free for months at a time, maybe it would be worth it? It's both expensive and somewhat risky. But not as risky as surgery, which is always a possibility if a stricture causes a complete obstruction that could kill me.

Hmmm. I'm thinking I'll see how tomorrow goes. I have a follow-up appointment May 31 with Dr. Radwin, who will perform the procedure. I want to talk with him about it when I'm not loopy on anesthesia. Then maybe I can get a better idea of whether this could be an effective way to control the Crohn's Disease. I'll ask what has become of the strictures he dilated before. Did they spring right back? Are the tissues elastic enough to endure future dilations without me ending up with a perforated bowel?

I'll keep you posted.

Meanwhile, enjoy some salad, nuts, hot-fudge sundaes and M&Ms or Kit Kat bars for me!

Take care,

Beth :-)

 

Still Here -- Both Me and The Strictures

Sometimes the constancy, the unpredictability, and permanence of Crohn’s Disease weighs heavily on me and I try to ignore it for a while. I want, somehow, for the story to have a happy – even miraculous ending instead of plodding on and on in drab, irritating tedium.

Anyway, that’s my excuse for not keeping my Crohn’s blog up to date of late.

But my delay revealed that at least one reader wants to know what happens next. Thank you, Juliette, for encouraging me to continue.

In a nutshell, two weeks after January's double-balloon enteroscopy, the endoscopy capsule was still stuck, so it was time to try again to retrieve it.

In February, Dr. Radwin went back in via an antegrade (through the mouth, down the throat) approach with the double-balloon enteroscopy and retrieved the capsule that was stuck. He didn’t try to dilate any of the other strictures he saw, since last time that resulted in the capsule staying in place.

The doctor recommended that I return in April so he can dilate the strictures.

Since then, I’ve had the pleasure of paying for the first two procedures. Not cheap, of course. And I continue to envy other people's fresh, crisp salads and gooey cookies while I live on scrambled eggs, yogurt, pasta and other squishy, impossible-to-get-stuck foods. Oh, and frozen yogurt, of course.

I haven’t returned for more small-bowel-stricture dilation. I’ve just been dealing with symptoms while trying to live as normally as one can when the highest priority is often noticing where the nearest rest room is. I have an appointment to repeat the procedure in a couple of weeks. But I’m going to cancel because I have an important conference to attend for my home-health consulting business.

As to whether dilation is really helpful, I can’t say whether it will be for me or not. Different people respond differently.

It is, though, only a temporary fix. The strictures come back. But if being dilated provided symptom relief for weeks or months at a time, and I had the procedure a couple of times a year, I would consider that to be far superior to having surgery to remove the diseased section of small bowel.

Hmmmm. What would you do?

Thanks for reading my blog. I hope it helps someone feel less alone with life’s challenges. We’re all just doing the best with what we’ve got. Right?

Take care,

Beth

What will tomorrow bring?

Tomorrow is the next X-ray to see if the endoscopy capsule is still stuck. 

Meanwhile, today is one of frequent restroom visits and nothing but water by mouth since breakfast. 

Having to leave twice during our two-hour stake conference meeting this morning was a little distressing. And I barely made it to the bathroom in time when we got home. 

Later, watching my daughter, Megan, and her husband, Jeff, assemble a family photo gallery for me on the wall in our front room was a fun distraction from how I was feeling. It turned out great! I love it!

Things are a little quieter now, though. So I might eat a normal dinner.

Crossing my fingers that tomorrow's X-ray looks nothing like the one two weeks ago.

And praying that I will keep being as healthy as I can be.

I let you know what happens.

Take care of yourself,

Beth

Tenacious endoscopy capsule still stuck -- yuck alert!

I’m disappointed, but not surprised.

The capsule is still stuck. Or, rather, it’s stuck again, in a different place. No doubt, it’s entrapped by a different stricture farther along in my small bowel.

Here's an iphone photo I took of the image on the radiology tech's computer screen. The image on the right is the X-ray I had at Granger Medical Center in December. The image on the left is the X-ray done at the same clinic on Monday, January 14, two days ago.

It looks like it's retreated to a higher position. "Geographically," that's true. But remember that the small bowel loops around and up and down countless times in the abdomen. And peristalsis (the bowel’s normal contraction-and-release cycle) does not usually move bowel contents back toward the stomach, but rather toward expulsion.

Anatomically, the capsule is now probably lower than, or distal to its position before the double-balloon enteroscopy, during which the higher, or proximal stricture was dilated.

They want to X-ray again in two weeks to see if it passes by then. I have no reason to expect that it will, given my history. But if it does, Hallelujah!

Meanwhile, it’s obvious to me that the capsule is intermittently blocking the way, preventing normal movement through my small intestine, then backing off. I know this because my bowel patterns are alternating between brief, normal-ish (for most people) periods and “frequent flyer” hours or days that I can best describe as resembling a bowel prep for a colonoscopy. If you’ve had one, you know what I mean. If not – lucky you!

I’m not having complete obstructions, though. I’m grateful for that. In a partial obstruction, anything solid backs up behind whatever is in the way (a tight stricture, for instance, or in this case, the endoscopy capsule and a stricture), and only liquid gets through, causing the bowel-preppish experience, accompanied by cramping and bloating. Then, when natural peristalsis allows, it backs away, letting through the solids that can get through the stricture. This causes the normal-ish bowel movements.

Sigh. I know. More than you wanted to know.

I’m grateful for medications that help me through this. I’m hoping to avoid a full obstruction that would hike my Prednisone back up again, now that I’m almost off of it. But if a full obstruction occurs, I’m ready for it.

Praying for the best, and going on with life.

Take care of yourself!

Beth

Stricture is gone, but endoscopy capsule still MIA

Well, I got good news and bad news.

The good news is that the stricture that was holding hostage the endoscopy capsule and the patency capsule remnants is no more. Dr. Radwin dilated it during my double-balloon enteroscopy on Tuesday.

The bad news is that one of the balloons vital to the enteroscopy’s success popped inside me, making the capsule’s retrieval impossible on the way out of my gut.

Here’s what the stricture looked like before the dilation.

Notice the clear, domed end of the endoscopy capsule in the bottom left corner of this image. The endoscopy capsule is about the same as the end of my ring finger, from the last knuckle to the tip. Next, look directly above the capsule at the small, round, dark opening at the end of the pink tunnel. The dark opening is the stricture – the narrowed area of my small bowel before it was dilated. The pink tunnel is the normal-sized lumen, or inside tunnel of the jejunum of my small intestine.  No wonder the capsule couldn’t get through!

Now that I’ve seen this, I can’t help but wonder how the small bowel follow-through study I had before could have possibly shown, as the report said, a normal small intestine with no sign of any strictures. Hmmmm. I’m not a radiologist. It would be interesting to find out if a different reading by a different radiologist might yield different results.

Theoretically, the indigestible items should find their way out on their own, now that the stricture has been dilated. That is, if there are no strictures farther on to trap them. Nobody knows whether there are or not. I haven’t seen any evidence of the capsule leaving, though I admit I could easily have missed it. I’m supposed to have another X-ray (Can you say more radiation exposure?) in two weeks to see if anything inorganic remains trapped.

I’ve requested copies of the capsule endoscopy and double-balloon enteroscopy reports. I’ll post again about any information that’s helpful.

Meanwhile, imagine that you swallowed a frozen garden hose, left it there for two hours, then had someone yank it out – Got it? OK. Then you know how my throat felt after the enteroscopy.  Swallowing? Not fun. It finally feels on its way to normal again today.

Next, imagine that a huge, blunt thing (like a fist, but abdomen-sized) hit you just below the belly button a few times. That’s pretty much how I’d describe my gut reaction – that is, once the nausea waned. And lots of trips to the restroom. Not pleasant.

Today, the pain is only intermittent instead of constant. And I only had to dash to the restroom 8 or 9 times today. Mostly earlier. So I think it’s getting better.

Because the pain twinges feel a lot like the pain that warns of impending bowel obstructions, I don’t know if the capsule is still in there, getting stuck intermittently in a yet-unknown stricture, or if my intestines are just still complaining about being roughed up on Tuesday.

Today was better than yesterday. That’s a good thing.

Take care,

Beth