I’m new to this forum, but am very glad that I’ve found it!
I’m basically an anorexic, even though I don’t have anything against food. I have been having severe abdominal post-prandial pain for over a year, and I’ve gradually given up trying to eat much solid food. I live on smoothies, Glucerna, electrolyte drinks, and the ocassional bowl of soup. I’ve lost 28 pounds, which is about 20% of my pre-illness body weight. I’ve tried a zillion diets, but all food seems largely the same to me— I have pain if I eat it. I try to compensate by eating as little as possible.
My RUQ pain is near-constant, and is at least partially positional: I feel better lying on my stomach. I have developed a lot of food phobias, and I have early satiety, so I never eat anything in much quantity. I’m functionally an anorexic, though people usually tell me that I “don’t look sick”. But I’m terrified of what will happen when I’m down to 120, 110 and 100, and I feel like I’m treading water, waiting for someone to see me as “acute” and step up the extremely slow testing process that I’ve been undergoing over the past year.
I’ve had tons of blood work, upper & lower endoscopies, gallbladder ultrasound, and a CT scan. Will have a HIDA scan on Friday. All have been normal. I need to see someone who can look at my pain from a vascular point of view....
I live in a really rural area of Colorado, and our health insurance options are very very limited. I’m stuck between a rocka and a hard place, as I need to step up the level of care I am getting. However, since my husband and I are self-employed, we have struggled a lot to maintain our income while dealing with my medical issues, so I recently forfeited my private insurance, and put us on Medicaid. This has been hugely important in keeping us afloat through some really difficult times. But Medicaid is not accepted by the kind of tertiary care centers that I need access to. I am desperately in need of some coordinated care. Even if I gave up my Medicaid and went back onto an ACA plan, there are no plans that would allow us to go to a place like Mayo. The University of Colorado medical system does not accept Medicaid outside of certain urban boundaries (according to my GI Doc). I think I may have something along the lines of Superior Mesentaric Artery Synrome (SMAS), but my GI doc seems to be running out of ideas. (The radiologist who read my CT claims I do not have SMA Syndrome. But are they really looking at other possibilities — and how would I know this information?
So I’m looking for work arounds that would (preferably) allow us to remain on Medicaid. Concierge Medicine? Medical Tourism? Maybe I need a patient advocate who could help me better understand my options. Any thoughts on how to manage my chronic condition from an insurance point of view would be most appreciated.
Chronic Abdominal Pain: Seeking an diagnosis.