Back to another stretch of multiple doctor’s appointments. On Thursday I saw my rheumatologist at Boston Medical Center. I was back to BMC again for a visit to my GI specialist on Monday afternoon. Today it’s a drive to the South Shore to see my podiatrist. Then on Thursday, I go to the wound clinic at our local hospital to check in on my digital ulcers.
It’s a lot of appointments. It takes a lot of time to drive and wait and be seen. I have a great team. I just wish the visits were more spread out.
At Monday’s GI exam, we discussed all the diagnostic tests I’ve undergone in the past few months to figure out what’s going on with my gut. Turns out that I have normal motility in my small intestines, and the breath test for bacterial overgrowth thereof was negative, though it’s not the most reliable test.
Bottom line is that we don’t have any physiological evidence that there is excess bacteria in my gut due to slow movement of digested food through my intestine—which we had expected to find, a common problem in scleroderma, but apparently not my issue. So what is causing the chronic diarrhea?
We know that the gut microbiome is very important to overall health, my specialist explained, but there’s a lot we just don’t know. There are no definitive tests beyond what we’ve done to clarify what’s going on. So we’re down to trial and error. He offered me a free sample course of the very expensive antibiotic that I can’t afford, to see if it would help. But why do that if my gut is actually processing food with normal motility? So I asked him to recommend probiotics, and I’ll report back how that works.
And so it goes. I learn from my doctors, and they certainly learn from me. They are all well-versed in the research. But so much of what happens in scleroderma remains a mystery.
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.
So frustrating! At least you have a team of doctors you can trust.
Yes, indeed. Thanks, Pat.
Don’t like to recommend drugs, but Cholestyramine worked a miracle for me. We had done all the tests, elimination diets and drugs, antibiotics, etc. My GI doctor said, well, let’s just try this. It doesn’t have a good percentage of working but it worked for me. That was one of the most frustrating side effects of scleroderma. Praying you find an answer.
Thanks, Janet. I’ll look into that. Appreciate your support and I hope you are doing well.