Asking docs for testing
I think I have colonic inertia. I’ve been on motility meds for 7 years, had an eating disorder 12 years ago, and it’s generally recognized by the GI’s I’ve seen that I have slow transit. I have done the gastric emptying study that came back normal and the anarectal motility which came back slightly weak, though I think that’s mostly because I’m terrified of invasive procedures and didn’t give it my all out of fear. Or maybe because my movements have been liquid for years because of meds. But anything else hasn’t been suggested where I live in the Midwest US. I’ve been to a general GI, a SIBO specialist who prescribed the gastric emptying study, a motility clinic that suggested I do the anarectal motility test, and yesterday, a gastro neurologist who said I’m doing everything right and put me back on IBSrella which I expressed doesn’t work for me.
I’m at wits end and my quality of life is bad. Stimulant laxatives on top of linzess and Motegrity, though Motegrity’s new generic was giving me crazy side effects and I had to go off, suppositories and enemas which I must have done too much of because they have stopped working.. I’ve tried miralax, milk of magnesia, magnesium citrate, magnaium supplements, mestinon, motility activatior, erythromycin (for SIBO,) and more. I drink coffee, eat kiwis, prunes, MCT oil, aloe juice, quit my job, live at home with my parents, and I’m still getting worse by the week. I feel like my docs either underestimate how bad it is even though I’ve explained, and even burst into tears in the office, or don’t even know about CI and the tests to find it. How do I ask for these tests in a way they don’t shut down? I feel like any time I ask for something it’s a no, and I’m dismissed as doing fine when I’m absolutely not. I don’t want to get out of bed, I don’t want to put on clothes, I stopped seeing friends, I have nothing left for my husband. I’m so lucky. I have support financially, I have a good family.. but I’m running out of ability to appreciate it when I’m too sick to enjoy anything.
I’m worried that where I live they just don’t have doctors that know about any of this but I even spent 5k on a trip to the Florida Mayo Clinic and was sent to a psychologist with no other testing. He took one look at “past of anorexia” and decided it must still be that, even though I said I’d been recovered for a decade and just want to be able to eat again. He didn’t let me even finish my sentences. I feel like I’m going crazy and that no one cares enough to help me. I’m sure you guys know the struggle. How easy it is to say someone’s doing fine when they don’t live our life. But any tips from anyone else who doesn’t live in a major city would be appreciated. I don’t think I have the money to risk out of state doctors again if I can’t be sure they will do something more than leave me at the hotel for the week I booked for tests. I am running out of funds, hope, energy, and support.