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!