Why can't I drink anything? 22 AFAB
Height: 5'5" (or maybe a little less now) Weight: 145-160 (fluctuates a lot) Medications: Omeprazole, methocarbamol, Tylenol, midodrine, metoprolol, trazadone, pregablin, linzess, Zofran (as needed). 1 liter iv hydration bi weekly. Drug usage: none, not even alcohol.
Conditions: a lot. Crohn's, POTS, hEDS, severe GERD, IBS-C, pelvic muscle and nerve damage, hip dysplasia, scoliosis 14°, patellofemoral pain syndrome bilateral, chronic fatigue, migraines, L5 partial sacralization (to sacrum), S1 and S2 never fused together, sclerosis in my SI joints and hip joint (had PAO left hip last September), Autism and ADHD, severe PTSD (including medical), orthostatic hypotension (due to dehydration). Also possibly degenerative disc disease and arthritis in my spine according to xrays from monday. And they suspect I have a torn labrum in the hip that had surgery.
Okay so the actual issue. I can't hydrate. I can barely get 25oz in per day. I have to drink on a completely empty stomach for it to not cause severe nausea and distension. The distension gets so bad I look 6 months pregnant. I will feel incredibly full from liquids too, and it's very uncomfortable. I can eat food just fine, as long as it's low/no fiber and isn't liquidy (I can't even tolerate spaghettios). So naturally I'm very dehydrated, even with biweekly fluids. My blood pressure is chronically low now 80-90/40-60. Antinausea meds don't help, tried metoclopramide and another along with zofran. Because of the POTS combined with low BP, I pass out and fall basically everyday. Which keeps reinjuring my hip. This has been a constant issue since the surgery last September, but I had mini flares for like a week beforehand.
My veins are scaring over due to the hEDS, and I only have a few access spots left. No one will prescribe a port or do tests to figure out what's wrong. My GI doctor thinks it's Crohn's related, but cause of the constipation from the dehydration I can't do the test they need to prove to insurance I need a new immunosuppresant (I failed humira). I can't do an MRE because I can't drink the contrast either. So instead she referred me to an eating disorder specialist "just to be sure" which of course was negative. So now it's come to a complete halt. My pcp wants them to do a gastric Emptying study but again, GI wants to "wait and see." She doesn't think it could be a legit problem cause I'm still able to eat, and apparently eating is affected first them drinking? But my eating is affected somewhat, I cannot tolerate any fiber.
What on earth is going on with me?? Why can't I hydrate? I have a huge tea collection with amazing tea cups I used to use daily, it's been something like 9 months since I've been able to use them. I feel terrible all the time, I'm always dizzy, I have terrible brain fog, I'm completely stuck to my couch, and I have absolutely no social life anymore. I can't cook for myself or clean up after myself. I can't do 90% of my hobbies. All I do is sit around and watch tv, maybe play on my computer if I have the mental energy. My life is absolutely miserable, but my medical team can't or won't do anything.
If you have any suggestions of what to try, tests I could do, or what this could possibly be; Please let me know! Thank you so much if you read this whole post. I appreciate you so much! Have a nice day!