The GI trip took a little over two hours today, most of it spent waiting. Once ensconced in an exam room, my first visitor was a research coordinator who asked me to fill out a questionnaire for a longitudinal study tracking the outcomes of a few thousand patients at IBD clinics across the US. When that was done I checked Wimbledon scores, always pleasantly surprised when I get decent cellphone reception in the bowels (so to speak) of a large medical building, and opened a new message from my sister: a photo of her angelic-looking toddler smiling sweetly.* Its caption read “He’d just angrily thrown a muffin at me.”
Visitor #2, who came knocking 15 or 20 minutes later, was the NP you see once your condition is stable and you’re no longer interesting fodder for residents and fellows. She’s nice but our encounters can be frustrating because of her inexperience, which isn’t meant as a knock against her; it’s more a commentary on how few IBD patients belong to my screwy cohort.** I get a touch nervous when she asks questions about certain symptoms, because answers that are normal for people like me (i.e., the colonless UC-to-Crohn’s contingent) still visibly alarm her. She also has a tendency to order unnecessary tests, which wastes both time and money.
The first item on her agenda today was to ask about the swallow study, and while answering I was momentarily irritated with another nurse — my GI’s assistant, who I’ll call Phoebe. Two weeks earlier, at the speech pathologist’s request, I’d notified my doctor of the results and Phoebe replied “I’ll discuss this with him and get back to you.” She didn’t bother replying until last night, probably after seeing my name on today’s roster, and her response was a bit odd given the circumstances.
After suggesting the therapist order more testing herself, something she cannot do, Phoebe wrote “When GI does scopes, we can evaluate for physical barriers, but can’t do much if there is muscle discoordination or a nerve issue that affects swallowing.” It was a ‘no shit, Sherlock’ declaration: the speech therapist and radiologist already knew that. But they can’t say for certain that my dysphagia is due to a neurological condition when Crohn’s can cause a narrowing of the intestines. Indeed, I’ve had strictures in other (lower) areas of my GI tract before, most recently in 2017.
Even though it was, from Crankenstein’s perspective, a no-brainer that I would be sent for a scope — the neurologist would’ve ordered it if the GI hadn’t — there was a part of me that really wanted to believe Phoebe had spoken with him and been told “Nah, we can take a pass on this one.” But that slim hope vanished as I explained the swallowing chain of events to the NP; spoken aloud, it sounded too preposterous to be met with anything other than “We oughta take a look.” When I told her what Phoebe said, the NP pulled up the message on her computer and pursed her lips.
Once our conversation was over, she left to brief the doctor and I consoled myself by reasoning At least we’re close to having met our family deductible… And then the real waiting began, because seasons can change while the GI puts out other fires and schmoozes in the hall. When he finally strolled in, he did the usual hand sanitization and followed it with a handshake. Taking a seat across from me, he said I was due for a pouchoscopy and that he wanted to perform an EGD at the same time to check out my esophagus. “I expect the dysphagia is unrelated to Crohn’s,” he volunteered, which jibes with my limited understanding of the subject, but I didn’t ask for additional information because I already know the most obvious alternate scenarios.^
Late August was the earliest I could book an appointment, so my Bananaramaesque cruel summer will continue unabated. The good news is that I was spared a trip to the phlebotomist, which is why the outing didn’t blow right past the three-hour mark.
* Back in my Tracfone days, there was an early morning scope that turned into an all-day affair because I was too dehydrated for twilight anesthesia. I was stuck in bed for hours while receiving intravenous fluids and all I wanted to do was watch a live scoreboard while one of my favorites — Dominic Thiem, I want to say — played at Roland-Garros, but my phone wasn’t up to the task. When next month’s scope rolls around, the US Open should be underway; I’ll bring an iPhone charger and a long cord just in case.
** Some gastroenterologists are also baffled by us; that’s why IBD subspecialists exist.
^ If it’s not a result of the PD or cervical dystonia, it could be a separate GI issue that’s flown under the radar.