One of the cheesy maxims I lay on my patients all the time is “information is everything.”
For you to be able to oversee your medical care, you need to know what you’re dealing with. You need to know about your disease (the other vital information is for you and your doctor to know about you.To have all your records – past history, health habits, family history, progress notes, consults, lab results, imaging studies the full monty – but that’s a different issue).
I was recently diagnosed with SIBO – one of those snappy acronyms the medical profession so love. It stands for small intestinal bacterial overgrowth. It seems to be a fairly recent “invention.” I had not heard of it. My gastroenterologist – who I went to see because of persistent IBS type symptoms didn’t seem to be very well informed. He put me on a course of antibiotics.
IBS is another slick set of initials to bandy about. You may know, that stands for irritable bowel syndrome – though this is often used as a “wastebasket diagnosis”, that is something you diagnose when you can’t figure out what’s really going on, prompting some wags to say it really stands for “I Be Stupid.”
I did the routine “Google search” about SIBO and really didn’t find very much hard information. So then I took the advice I give others about where to get good information.
I Turned to a Patient Forum
I turned to a patient forum. To PatientsLikeMe. Here I found an interesting post by community moderator Vivian – “The Four Facts About SIBO Your Intern Keeps Getting Wrong.” Which included a whole lot I didn’t know about.
So I posted myself, saying no one seems to know much about it and I had read that it very frequently relapses after antibiotics. In response to this I heard from Elle, who also has SIBO and provided all sorts of information about different treatments and diets, sent me links to all sorts of useful articles and sites.
Also, so often with somewhat obscure conditions, what you really need is to track down some super sub-specialist who has honed in on your particular problem.
She tipped me off about Mark Pimentel, associate professor of medicine at Cedars-Sinai Medical Center in Los Angeles.
I need to keep working on keeping the right bacteria in the right part of my intestine, and not the wrong ones in the wrong places. But I have a much better understanding of what’s going on and other options to try.
The specialized knowledge that patient acquire from dealing with different diseases means they can often be far better informed than their doctor - especially about the nitty-gritty practicalities of their illness.
So keep patient forums in mind.