Since January 2014, I’ve been through a series of unpleasant procedures meant to determine the cause of my intermittent abdominal pain. My initial assessment had something to do with my reproductive organs, but it revealed itself to be gastrointestinal in origin. The problem is that I still don’t know what the actual cause is, not even after my awful colonoscopy experience on my last birthday. So that’s why my gastroenterologist decided to seek pre-authorization for a capsule endoscopy, which I finally had last week.
Before Insurance Will Authorize a Capsule Endoscopy
Because they tend to be so expensive, insurance companies don’t like to pay for capsule endoscopies until every other diagnostic procedure has been attempted – and all of them are intrusive. I had a number of blood tests, a stool test, barium-powered x-rays, CT scans, an endoscopy, a colonoscopy, and probably several other things I’ve summarily forgotten. Only then would CDPHP let Dr. M petition them to pay for the camera pill he wanted me to swallow. And it took over a month – nearly two months – before getting the thumbs up so I could schedule the procedure. Scheduling was tricky because the practice only does capsule endoscopies on Tuesdays and Thursdays. I see my psychiatrist every other Tuesday, and I was chaperoning my kid’s fourth-grade field trip on the first available Thursday. I made the decision to pull the trigger for the Tuesday after Memorial Day, two days before my son’s field trip. I ended up regretting my impatience, as I now wish I’d waited to schedule it for today. Live and learn.
Capsule Endoscopy Preparation
The dietary restrictions for a capsule endoscopy are far laxer than for other -scopic procedures I’ve had. The only thing I had to avoid a week ahead of time was my iron supplement. I had to avoid raw fruits and vegetables for 48 hours before the procedure. (Corn on the cob was, thankfully, not something I had to avoid at Sunday dinner at my mom’s.) I was allowed to eat breakfast the morning before my procedure, and my husband made me a bagel with cream cheese with a side of home fries. Then it was clear liquids for the rest of the day. I treated myself to an entire bottle of honest-to-goodness Coca-Cola. No diet soda for me that day! I needed calories to ward off hypoglycemia.
Still, it was poor consolation for getting myself into a situation where I couldn’t enjoy any Memorial Day picnic fare. Strike one against my choice of timing. And we won’t discuss how my husband picked up McDonald’s for dinner and ate it right in front of me.
At 5:00, I had to start my “ritual cleansing.” Instead of the prep kits I’ve had to choke down for previous procedures, this was just a whole bottle of Miralax powder mixed with 64 oz of clear liquid. The Miralax, thankfully, is completely tasteless. I drank it down with a pitcher of Crystal Light lemonade over the course of two hours. The fact that it was so easy to get down was definitely a plus in my book. Gagging on every swallow of 64 oz of liquid laxative is its own special brand of torture, so I was genuinely happy about how this didn’t taste bad.
Of course, it took its sweet time to kick in. It took several hours, long enough for me to ask the people of /r/ibs how long it usually takes for it to work for them. By the time anyone responded, it had finally kicked in. I’ll spare you the details aside from stating that it continued to work for over 24 hours. That was unpleasant. It also didn’t work well enough within the time frame for me to have had a colonoscopy, so I can’t ask for Miralax prep the next time I need one of those – unless I started it earlier. Or maybe the additional dietary restrictions would make it work just fine. I don’t know.
I must confess that my eyes skipped over the part of my instructions that said “nothing by mouth after 9:00 pm.” I continued to drink liquids until midnight, including taking my bedtime meds. I really hope that didn’t screw things up. (I haven’t heard anything about my results yet.)
Capsule Endoscopy Day
My mom drove me to the office, even though I was told I could drive myself. Well, I may not have been getting sedated, but I was a bit muddy-headed from lack of food, drink, and sleep, and it was a 30-ish minute drive through morning rush hour traffic. I was very grateful for the ride.
I got called back into a room, the nurse took my blood pressure and pulse, and I was told the person who would be administering the PillCam would be in shortly. (P.S. My Fitbit Charge HR was far more accurate than the nurse’s pulse estimation. I had anxiety that had my heart rate up.) Despite the sign instructing me to turn off my cell phone during my appointment, I had plenty of time to snap a photo of the PillCam I’d be swallowing and check out Twitter while I waited. The phone was silenced, and I made sure it was back in my purse by the time the door opened.
The doctor (?) responsible for administering capsule endoscopies came in and introduced herself. She asked me how I was, and I said I was thirsty enough to kill for a drink. She smiled and said I’d get a drink soon enough, but nothing good. She went over all of my instructions for the rest of the day first. I ended up swallowing the pill at 8:35 am; it was about the size of two fish oil pills squished into one capsule. I often have trouble swallowing irregularly shaped pills, but this thing slid down easily because it was pretty “sleek” despite being larger than average for a pill. I had to swallow it with a full cup of room-temperature tap water mixed with simethicone; gas bubbles can ruin the images, so the gas drops minimize the chances for having to redo the whole thing. She was right – it wasn’t really a pleasant beverage, but dammit, it was wet, and that was good enough.
I wasn’t allowed to drink anything else until 10:35, and I was allowed to eat anything until 12:35, when I could have a “light lunch.” I had to wear a bulky transmitter belt with a holster for the device that would record all of the images. The belt didn’t fit properly; they came in two sizes – small and large – and what I needed would have been a medium. There was a blue light that needed to keep flashing for 12 hours to signify that the PillCam was transmitting properly. I would be free of this burden at 8:35 pm. Once I got suited up, I understood why I’d had to wear a shirt that came down to my hips and wouldn’t ride up past my waist – although I’m still unsure about the 100% cotton requirement that meant I had to borrow one of my husband’s XL t-shirts. I looked ridiculous.
Oh, and I was given a horrible plastic contraption intended to aid in determining when I “passed” the capsule. I was told to line it with Saran wrap for two reasons: so I wouldn’t have to wash it out multiple times and so I could – it makes me cringe to even type the words – pick up the captured material and feel around for the PillCam. I hadn’t known that this was part of the deal. I thought it would be assumed that the capsule came out so long as I wasn’t writhing in pain from it getting lodged somewhere in my small bowel.
The Rest of Capsule Endoscopy Day
When my mom dropped me off at home, I decided that I needed to take a nap. I had slept poorly and awakened much earlier than usual, and if I wasn’t allowed to drink anything for two hours, I could at least minimize my suffering by sleeping to pass the time. I enjoyed a nice hour-long nap, despite how uncomfortable it was to lie down with the belt tight against my waist and the holster close at hand.
Since it was Tuesday, it was IHOP day for lunch with my mom. It’s been a tradition for years. I had to scout out the menu and nutrition facts online to determine what I could possibly order that would count as a “light lunch.” I ordered the Jr. Ham & Egg Melt off the kids’ menu. Outside the kids’ menu, it’s nigh on impossible to find anything under 1,000 calories. I could’ve happily devoured the full-sized adult sandwich, but at least it was something in my belly. I was also grateful that no one called the cops thinking I had some sort of incendiary device strapped to me; it probably helped that my mom and my sister-in-law were loudly laughing and making fun of me as I walked into the place.
Back at home, I was quite uncomfortable for the rest of the day. As previously mentioned, the Miralax continued to do what it was meant to do throughout the day, sending me to the bathroom too many times. I didn’t bother with the Saran wrap nonsense until approaching the 12-hour mark, as I didn’t think it would pass quite that quickly. (As the blue light kept flashing even after I flushed, I proved myself right.)
I did the Saran wrap thing once – and only once – shortly after I was allowed to take the belt off. It was awkward and disgusting. I tried to do it a second time, but I just… couldn’t get myself to go. Hey, you try going to the bathroom with something like a kids’ potty chair covered in plastic wrap under your butt and see how you fare. After some internal debate, I decided that the potty seat wasn’t working for me, and if I couldn’t see the capsule with my own eyes within the week, it was worth getting a little more irradiated to look for the sucker by x-ray.
Easiest X-Ray Ever
Since I wasn’t able to call and report to the gastroenterology office that the capsule had left the building, I called them on Tuesday to report that I had not seen it. They faxed over orders for me to get x-rayed someplace close to home, which I did yesterday – Wednesday.
Pro-tip for the ladies: If you have to get any type of imaging done, wear an unembellished t-shirt, a Genie bra, and yoga pants. Then they won’t make you change into a hospital gown, because you’re already free of metal in your garments.
The most time-consuming part of the whole process was getting signed in at the registration desk because the receptionist had a hard time locating my orders from the previous day. I only sat in the waiting room for two or three minutes before I got called in, and I got to go straight to the x-ray room since I didn’t have to change my clothes. Two pictures lying down, one standing up, and I was on my way home again.
Still Waiting on Results
I haven’t gotten a call about my x-rays yet, which I’m taking as good news. If the PillCam had lodged somewhere in my intestines, they would have called me quickly to schedule surgery. I haven’t gotten a call about my capsule endoscopy results either, so I don’t know if they got the footage they needed or if the footage told them anything useful about where my mysterious bleed might be or why I wake up some days feeling like I’m being stabbed in the appendix. (It’s not my appendix. They check that every time.) For now, it’s still under the heading of IBS, the diagnosis they give you when they can’t explain what’s wrong with your gut. I’m hoping they found something, just so I know, and that whatever “it” is turns out to be easily treatable.
If I get a diagnosis out of this, I’ll definitely post about it. If the results were still inconclusive, I’m not sure if a post will follow…unless it’s a rant to vent my frustration.
[Update: They found nothing abnormal as a result of this procedure. It was a huge disappointment.]
Read my Big Fat Medical Update for more details.