u/DryEstablishment7197

(unsure what flair to put this under. I think rant is right? question mark?)

17F with ulcerative colitis, undiagnosed heart issue and undiagnosed sleep disorder. let’s wind back in time to a month ago, where I was in month 7 of an UC flare, an H pilori infection, and near zero sleep. two week dose of antibiotics and I feel like death, can’t go on my UC biologics yet because biologics bomb the immune system, and antibodies plus an infection and having a destroyed immune system? yeah no.

so, bleeding in ass, bleeding in stomach, can’t sleep, nauseous due to meds, can’t move either. I consider asking if the sheer fatigue of being on flagyl is normal but decided to push through. day 9 I’m nauseous as all hell, sniffing rubbing alcohol didn’t work, cold compress didn’t work, zofran, etc. I throw up twice, both times bile. I call my gastro office and they say in my case that’s an ER visit. got it.

i go to ER, get some fluids, go back home feeling okay.

next day, more bile puking. twice. then on Wednesday, five times, then on thursday, six times. I go to er again.

urine sample is so dark it looks like Dr Pepper. (literally held up a bottle next to it, same color) even the senior nurse makes a shocked face seeing it. I’m pale, my heart is beating 145 and I’m still nauseous despite the zofran. they want to admit me but they have no GI doctor on team, after four hours I’m transferred to another hospital.

two more bags of fluids, no more puking. still can’t tolerate eating though. abdominal x rays are normal, labs are normal (apart from white blood cell count but considering the flare, expected)

at this point I need to pee every 30 minutes and my stool is just bloody water. GI team is completely lost even though it’s like six doctors. I suggest- “what if it’s a gallbladder issue?” as my gastros NP had suggested getting a scan for that just in case.

the doctor shakes her head, she’s firm in that it’s definitely not that. “you would be in so much pain” she says.

fast forward next night, I’m laying in the hospital bed and feel this…horrible feeling in my chest. this deep crushing feeling. resting BPM still jumping 90-145 even though I hadn’t stood up in hours. the feeling turns into pain and radiates up my neck and down my left arm, I call a nurse in, meet a lot of people VERY quickly and have an EKG. ekg is normal so they push it aside and just give me a Tylenol

next morning I’m eating, and talking with the doctor. she’s insisting it’s just like an intestinal virus or something. “just a virus to run its course” and I accepted this answer. it made sense, and then the day after the next I have my gallbladder scan.

it was not a stomach bug

i look upon the ultrasound screen and see a little circle that very much ain’t supposed to be there blocking my bile duct. A growth. Barely 0.3 by 0.4 cm in size. Barely anything to worry about thankfully, but now I’m irritated.

anyways now I’m on biologics, and scheduled to make sure the polyp isn’t growing. Never go against your instincts when it comes to your body yall, yeesh

I’m here to ask about this as it’s something I’ve wondered for a while, and figured to ask here maybe. I have the most insane sleep wake cycle/circadium rhythm, I’ve been to three sleep specialists and keep getting told it’s strictly behavioral. which… I don’t think so. so I come here to ask if this sounds like a neurological/brain thing.

i have absolutely no pattern to my circadian rhythm whatsoever. at all. other than it’s never ”right“ for more than two days at a time. I’ve had this issue my entire life, laying awake all night, sleeping 4 hours, not being able to sleep next night, then suddenly sleeping 12+ hours, then oop! flips again. take this last week for example, I was suddenly laying awake all night until noon, sleeping a few hours, then couldn’t sleep next night either. got myself to fall asleep at 11pm one night, 12am the next, then last night at ten but then woke up only 3 hours later and can’t fall back asleep. 5 am as i write this

there have been times I’ve been awake 30+ hours against my will, even worked 7 hours one time on 0 sleep and a dream. I don’t even drink caffeine anymore, and If I do it’s MAYBE 2x a week. I don’t go on my phone at night. no lights in my room. only noise is a sound machine, and any time I’ve held a schedule my body just goes against it after a few days and suddenly I’m laying awake all night. sometimea I’ll wake up at 6 after a full eight hours, crash at noon for another 6, then cycle repeats. I currently average at 4 hours of sleep a day and its torture

theres a few reasons I wonder if it’s neurological. 1, I literally cannot think of another cause, no trick or supplement works. 2, family history of neuro-related sleep issues. and 3 I have a history of simple tics, especially when trying to sleep. if it’s not neuro I’m genuinely at a loss

im 17 now and cannot recall any time I’ve slept normally. Ever. Even my mother says I’d lie awake till morning twitching like I’d just downed a redbull as a baby/toddler. Yet every doctor I go to says the time thing.

either drinking 5 energy drinks in my sleep and don’t know it or something is very wrong here

anyways thanks for reading my ramble🥲

I’ve never been able to sleep right. my entire life I’ve laid awake till morning or late night. it’s only gotten worse over the years and Im utterly exhausted and desperate. I can sleep four hours then go 20+ without sleep, no matter how tired. take yesterday for example, i slept 2 hours the previous night then laid awake alll night until noon. slept 5 hours, now its 5:04 AM and i yet again cant sleep. I’m tired and my eyes are heavy.

when I was 11 was the first time i went to a sleep specialist and he told me, direct quote “people like you don’t get far in life. if you keep choosing to do this, you’ll never amount to anything” diabolical, then I had a sleep study that was inconclusive. 3 years later, new doctor, he tells me to get off my phone and stop drinking coffee, I do that, nothing changes and he moves cities. Now I’m 17 and tried yet another one, and she told me that a sleep study will probably be inconclusive and that I’m “just not disciplined“.

I can only recall waking up at a normal time and falling asleep at a normal time twice in my life, then it all flipped again. if I wake up at a normal time with a good amount of sleep, I fall asleep again in afternoon, then I’m awake another 24 hours. when I’m tired and lay down it’s like my body is restless even though my mind doesn’t want to be, my heart beats hard, my hands twitch and shake, I practically vibrate with energy even when I can’t lift my head.

i feel crazy, genuinely. No sleep hygiene or over the counter pill works for me. I’m going to track my sleep with a routine and schedule for a few weeks, maybe a month. Possibly then I’ll have proof of this tortuous cycle. the only things doctors have told me is that I have bad sleep hygiene, I use my phone too much, I’m stressed, coffee etc. is there anyone out there that has had this issue? suggestions on what to do? im at a loss. much love