For months, now, my gut has been unhappy. Al and I both got the flu over the winter, and ever since, I’ve been having diarrhea most days, often several times a day. This is not a new issue, and I’ve discussed it at length with my Boston Medical rheumatologist, who has explained how scleroderma affects the intestine, slowing it down so that you get bacterial overgrowth. I have gained relief for decent stretches of time from antibiotics, particularly Cipro, which seems to solve the problem.
However, I recently saw my new GI specialist at Boston Medical—an appointment that took months to get—who ordered a battery of tests to get to the bottom of it all (no pun intended). He is very reluctant to prescribe Cipro, because he doesn’t want me to develop resistance to it. He prescribed a different antibiotic that is specifically for bacterial overgrowth in the intestine, but even with my insurance, it cost several thousand dollars for a few weeks’ treatment. I couldn’t afford it, and so I didn’t fill the prescription, and told him so. He understood.
Now I have to go through all the tests and get results before our next appointment. So far, a blood test ruled out Celiac. I have a breath test for bacterial overgrowth later this summer, which I was supposed to do in April, but I had to take antibiotics for an infected ulcer a couple of weeks before the appointment, and that violated the 30-day period prior to the test of no antibiotics. In August, I have an upper endoscopy. And last week, I did a barium swallow, a test I haven’t done in decades.
I figured that there might be some changes in the process or equipment since the last time, and there were. The barium drink wasn’t delicious, but it wasn’t as vile as I remembered. Which made drinking three-and-a-half cups of it tolerable. The most interesting part of the test was that I could actually see the progress of the barium through my digestive tract on the black-and-white fluoroscope and discuss it with the radiologist in real time.
To everyone’s surprise but mine, my first sip of barium got stuck in my esophagus, hanging there on the screen like a black, sagging water balloon. It matched the familiar sensation of swallowing bread and having it just sit there. I always drink a lot of fluids when I eat, and, of course, drinking water finally helped the barium to begin to trickle into my stomach.
The team began discussing various strategies to finish the test, because the plan was to see how barium traveled through my intestines, as well. Given my slow start, they were anticipating many hours. But fortunately, once I drank more barium (three cups!), everything started to move. When they checked the fluoroscope a half-hour later, the solution had moved well into my stomach and intestines. I was free to go home.
The test results were pretty positive. Apart from my sluggish esophagus, a known scleroderma issue for decades, everything else was fine. And once the barium passed out of my system (it took about two days), my gut settled a little. But not a lot.
I’ve lost about eight pounds since I had the flu—one way to get rid of some age-related weight gain that I’d just as soon as do without. But I don’t recommend this way of losing it. I’m hoping things will stabilize sooner than later. And that the rest of these diagnostics go well and provide some direction.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Mika Baumeister
