vin·di·ca·tion (vin-di-’KAY-shun): The defense, such as evidence or argument, that serves to justify a claim or deed.
I have been vindicated.
Last Monday morning (February 27th) I had a dreaded appointment with my somewhat schizophrenic (or at least brutally unpredictable) motility doc. We had several concerns brewing: First, the “new” distention and vomiting I’ve been having since my j-tube placement—my belly swells enormously, and I vomit upwards of 2 ¼ liters of fluid in a single (non-breathing) episode. Second, besides being miserably uncomfortable in it’s own right, it is very painful (beyond ibuprofen’s reach), as the distention causes the incisions and the j-tube site to be stretched and pulled. As an added bonus, in the moments before the explosive emesis, I’ve been having massive acid reflux—a glorious new experience for me. And third, we wanted to talk about getting what’s called a venting gastrostomy, or venting g-tube, which would be another through-the-abdominal-wall tube that would basically allow me to decompress the contents of my stomach without vomiting (and severely damaging my teeth as time goes on).
The difficulty here was that we knew the answer to the g-tube question, and I was pretty certain the pain issue would be dismissed abruptly as well. After all, this is the doc who for the last year has been telling me that my symptoms are psychogenic: “Remember, you had a normal gastric emptying study.” So, braced for more eating disorder and other psychiatric accusations, we went in, praying that either a) he would listen to our concerns, or b) we would be assertive without being aggressive or angry with him. (A good bit of anger has been building up over the various denials of my symptoms and such…) We were armed to the intellectual and emotional teeth (which were chattering with anxiety as we went in the door), and ready to confront, fight, argue, and threaten our way through the appointment, if necessary.
However, Monday was our day, apparently. When I told him about the new symptoms, he said it sounded like it may be a partial small bowel obstruction, caused by the new j-tube. What we’d need to do is get an abdominal x-ray when I’m having the symptoms, so we can see whether the distention is in the small bowel or the stomach. (I knew this would be practically schedulable—all I’d have to do is eat something semi-solid for dinner, and I was bound to have symptoms.) He wrote an x-ray requisition that I could use at our local hospital (less than a mile away) as soon as I had symptoms. I was to call him the day of or the day after the x-ray, and we’d talk about the results and potential solutions. Then he gave me a double prescription of Prevacid for the reflux, allowing me two per day “until I felt things were under control,” then going down to one (but still having a prescription for two).
The next looming spectre, that of the venting g-tube, we knew would be a major sticking point, though. Two weeks earlier, at my follow-up with the surgeon who had placed my j-tube, I inquired about the venting g-tube and was dismissively and adamantly told “NO.” Apparently some other woman had a gastric neurostimulator, and when she got a g-tube, the stimulator got infected and she almost died. They weren’t willing to take those risks again. But, I had to bring it up with Dr. Patterson, even if just to plant the idea in his head for later harvesting. So, I mustered my forces and asked, “If the x-ray shows that it is my stomach, would a venting gastrostomy be an option?” And, to my utter surprise, he answered, “Yes, as long as I put it in. I know where the neurostimulator wires are, and know where is best to place the tube.”
I almost fell off the examining table.
Now for the other potentially dismissable concern: pain. Once again, I took a deep breath and said, “The extremity of the distention is quite painful, particularly around the j-tube site. What would you recommend?” To which he casually responded, “Oh, hydrocodone [a mild narcotic] would work, but you’ll need the elixir so you can put it through your j-tube—swallowing tablets won’t do you any good.” Not only was he offering me REAL pain medication, thereby acknowledging some REAL pain, but this was also the first time he had ever acknowledged that oral medications might not be effective in my rather lazy stomach. So not only did he write a prescription for it, but gave me two refills!
I had to hold on to the (albeit unnecessary in a GI clinic) OB/GYN stirrups to keep myself from tumbling to the floor.
So, after a lengthy discussion about the latest movie releases (Dr. Patterson is fascinated by our positions as film critics now), we left—in utter shock and disbelief.
Monday night we didn’t have anything better to do, so I ate a hearty dinner (OK, hearty is a misnomer, but it was hearty for me!) of tofu, crackers, pureed vegetables, and broth. Three hours later, it was clear that I was ready for the x-ray. We headed over to the radiology department (with a large orange basin, just in case I couldn’t hold it down long enough), waited 45 minutes (while I nearly exploded), and then got the two x-rays done (upright and lying down), after which I promptly erupted with a force and volume to rival Mount St. Helens. I was miserable that night and all the next day—nauseous, tired, and in quite a bit of pain—but we had the x-rays, and would soon know whether my j-tube needed repositioning, or whether my stomach was still acting up.
Two days later, when the report still hadn’t shown up in the computer system (I work for a joint hospital, and can look up my own test results), I called the radiology department and blithely mentioned that I’d had some urgent x-rays done, and my physician was anxiously awaiting the results. Ten minutes later, the report showed up:
Abdomen supine and upright demonstrate marked distention of the stomach with a large volume of gas and a fluid level… there is no small bowel distention… CONCLUSION: Marked gastric distention with fluid and air/gas… No small bowel obstruction.
In other words, I am still having significant symptoms of gastroparesis.
About two hours later, I got a phone call from the motility doc himself. After reading the report to me (which he didn’t know I’d already seen), the following words actually came out of his mouth, and I quote:
“Well, we wanted to see whether this was a partial small bowel obstruction or really bad gastroparesis, and, well, it’s really bad gastroparesis.”
Coming from him, after all the psychiatric accusations and denial of my symptoms for the last twelve months, I nearly bit my tongue off to avoid sarcastically screaming, “FUNNY, I THOUGHT THAT’S WHAT I’D BEEN TELLING YOU FOR THE PAST YEAR!”
He then said it would be a wise and reasonable thing to put in a venting g-tube, and since I have a j-tube already, I wouldn’t have to stay overnight for IV fluids—I could get plenty hydrated through the feedings going into my small intestine. He was so shocked by the report that he wants me to bring the actual x-ray films with me when I have the procedure done.
SO—for some (undeserved) reason God was smiling on me all day, and when I finally got in contact with the scheduler for procedures, there had been a cancellation on the only day that would work for me (outside of waiting another four weeks). Wednesday, March 8 (my late grandmother’s birthday), I will have a second tube implanted through my abdominal wall, this one marked “exit only.” It’s a 15-minute procedure that only requires mild sedation, and I’ll go home that afternoon. Fortunately I have the next day off to get used to the new contraption. (Meanwhile, Greg has begun calling me his “spouts” instead of “spouse.”)
So why have my symptoms not only changed since the j-tube surgery, but gotten worse? It’s hard to say. The surgery resident’s best guess was that now that I’m getting so much good nutrition through my small intestine, my stomach has finally decided it can stop trying so damn hard for such paltry results. Otherwise, it may just be that the gastroparesis has been steadily worsening over the last 2 ½ years, and now it’s just progressed to where my stomach is barely working at all. Most likely, we’ll never know; we’ll just be continually learning to live with it.
I’m sure I haven’t covered it all—and I will most certainly have better information next week, after the new tube is placed. But there’s the update—pleasantly shocking as it is. The greatest thing now is that we are officially out of “diagnosis” mode, and well into solution/normal mode.
OK, maybe the greatest thing is that I HAVE BEEN VINDICATED.
Since I know this is kind of hard to grasp, I’ve blogged some “basics” on g-tubes and j-tubes, particularly mine. Click here for the info!