u/megatron8686

kinda a rant, kinda a question.

currently 11 days post op major abdominal surgery and J tube placement.

I used to work in childcare, but a few years ago when my disabilities progressed I had to change careers. So now I work in payroll. I like my job and I’m good at it. They have been accommodating in allowing me to work from home, giving me ergonomic supports in office, and allowing me to take medical leave from mid June until now as I’ve dealt with my more acute stomach issues.

I guess my problem is I don’t want to go back. Or at least I don’t want to go back September 1st, which is what my current leave is scheduled for. Everyone, my family included, thinks now that I’ve had this abdominal surgery, i’m fixed and should be able to just get back into work after the incisions heal. I would start working from home again, which I feel like gives me less of an excuse.

But idk, I just feel like I’m not ready and like maybe I’ll never be ready. This surgery (and 53 day hospitalization leading up to it) has taken a lot out of me. My digestive system has been completely rerouted, I’m down an organ, and I’m getting my food through a tube sticking out of my intestine that I need to take care of (that really does not want to start healing, thanks EDS).

My joint pain and POTS are also significantly worse from deconditioning and lack of physio plus the trauma of major surgery. And on the mental side, it’s been a pretty traumatic couple of months. My anxiety/OCD are much worse, and I have a lot of brain fog.

If I go back to work in two weeks, I think I could physically manage it but it would take absolutely every bit of energy I have. But everyone expects that I’m just cured now idk. Doesn’t help that my boss is my aunt so my mums been keeping her updated, probably telling her how good I’m doing.

TLDR: I have existing chronic illnesses and just had major abdominal surgery and I feel like everyone is expecting me to go back to work a lot quicker than I can. I could likely physically manage the work but it would take everything out of me and i really don’t feel ready mentally (but don’t feel like that’s a valid reason)

kinda a rant, kinda a question.

i have hEDS and POTS, and am currently 11 days post op major abdominal surgery and J tube placement.

I used to work in childcare, but a few years ago when my disabilities progressed I had to change careers. So now I work in payroll. I like my job and I’m good at it. They have been accommodating in allowing me to work from home, giving me ergonomic supports in office, and allowing me to take medical leave from mid June until now as I’ve dealt with my more acute stomach issues.

I guess my problem is I don’t want to go back. Or at least I don’t want to go back September 1st, which is what my current leave is scheduled for. Everyone, my family included, thinks now that I’ve had this abdominal surgery, i’m fixed and should be able to just get back into work after the incisions heal. I would start working from home again, which I feel like gives me less of an excuse.

But idk, I just feel like I’m not ready and like maybe I’ll never be ready. This surgery (and 53 day hospitalization leading up to it) has taken a lot out of me. My digestive system has been completely rerouted, I’m down an organ, and I have a tube sticking out of my intestine that I need to take care of. My chronic pain and POTS are also significantly worse from deconditioning and lack of physio plus the trauma of major surgery. And on the mental side, it’s been a pretty traumatic couple of months. My anxiety/OCD are much worse, and I have a lot of brain fog.

If I go back to work in two weeks, I think I could maybe manage it but it would take absolutely every bit of energy I have. But everyone expects that I’m just cured now idk. Doesn’t help that my boss is my aunt so my mums been keeping her updated, probably telling her how good I’m doing.

TLDR: I have existing chronic illnesses and just had major abdominal surgery and I feel like everyone is expecting me to go back to work a lot quicker than I can. I could likely physically manage the work but it would take everything out of me.

i’m sorry but it’s so fucking frustrating seeing posts here every day about “i’m not hypermobile but xyz makes me think i have hEDS”, usually pain or comorbs like pots or mcas, usually post viral.

as of right now, no you do not have hEDS if you’re not hypermobile. full stop. there is diagnostic criteria for a reason. now, the diagnostic criteria is changing in december, but until then holy shit you need to be HYPERMOBILE to have HYPERMOBILE ehlers danlos.

muscle guarding and stiffness as a reaction to hypermobility is a thing but it only goes so far and requires the presence of historical hypermobility to count towards diagnostic criteria.

i do think there’s a very good possibility of a different disorder entirely, post viral, that causes mcas, pots, and joint pain/instability. but we do not have the research that that phenotype and hEDS are the same thing necessarily and until we do it’s irresponsible to keep saying that all you need is the comorbidities to have hEDS. no. you can have pots and mcas completely separate from hEDS. chronic joint pain can be caused by a billion different things, and if you’re not hypermobile, it’s PROBABLY NOT HYPERMOBILITY.

to add, hEDS is a lot more than just being bendy and people should be encouraged to look at the actual clinical diagnostic criteria instead of just following what they see online. science exists for a reason, we should follow it.

eta: this post is not about the beighton score. it’s widely accepted that the beighton is limited in capturing hypermobility. i am talking about people who are literally not hypermobile in any joints in their body (or just in one or two) and have never been but say they must have hEDS because of xyz.

blegh just want to complain for a minute. i’m 8 days post op laparoscopic gastrojejunostomy, cholecystectomy, and j-tube placement. despite having my guts rearranged and an organ removed, the most pain i’m dealing with is at the stoma (is that what it’s called?) site for my stupid j tube. any pressure or movement is stabbing stabbing pain at the insertion site.

to be fair, the rest of my stomach is pretty sore which might be heightening the pain i’m feeling from the j tube but fkin hell man it hurts so much more at the site (and also just below it, like more of a sharp muscle pulling feeling).

kinda spiralling because from posts on here i’ve seen people say it can take like a month for it to stop hurting. my j-tube is hopefully temporary to bridge the gap until i can get my oral intake back up, so my doctors only want it in for sure for two months. which means like as soon as the pain starts to go away they’re gonna yank it (hopefully) and i’ll have to start a new healing process 🫠

im grateful for easier access to nutrition as my body heals from my surgery but fuck man it’s not comfortable

just posting bc it’s 3am and i need something to think about other than pain. although it’s pretty hard.

just had a gastrojejunostomy, cholecystectomy, and j tube placement for SMAS and biliary hyperkinesia. there is a god somewhere bc my surgeon managed to keep it laparoscopic despite pretty substantial concerns he would have to do it open.

funny enough, the initial pain was only about as bad if not better than the pain on a bad stomach flare day. now, about 9 hours post op it’s definitely worse, but still feels unfortunately pretty damn similar to my flare pain. which has honestly helped put things into perspective a bit. i have a really hard time trusting my body and always feel like im being dramatic, but i think the fact that 7 holes in my stomach, minus an organ, rerouted digestive system, tube sticking out of my abdominal wall, feels about the same as a bad flare.. ok perhaps i was not being dramatic

anyways just got my next dose of pain meds so time to try to sleep again (if my roommate could stop snoring plz and thanks)

i have a pretty major abdominal surgery on friday. i don’t really have any options left. my surgeon is confident and has a lot of experience with the procedure, but all i can think about is my hip surgery last year.

i didn’t have any major complications, but when i initially woke up after surgery, my nerve block had failed and i. felt. everything. it felt like someone was actively taking a saw to my hip. and for the first hour i barely got any pain relief bc the nurses didn’t understand why i was in so much pain. i have ehlers danlos, so local anaesthetics do not work as well on me, and lidocaine was used for the nerve block.

it took four hours, countless rounds of hydromorphone, multiple rounds of fentanyl, and eventually getting a pca pump to finally get control over the pain. my body had started to go into shock from it.

during this, i also needed a catheter placed because i was in too much pain to even shift onto a bed pan. this involved three nurses literally digging around in me (i guess i was hard to put one in). the curtain opened at one point and i was just so exposed. i was sobbing and no one comforted me or closed the curtain until i yelled to close it.

what followed was four days in hospital (this was supposed to be outpatient) where my pain was still not adequately controlled, and then 9 days of no bowel movements at all which led to horrible nausea and pain.

my recovery after the first week and a half followed a pretty standard trajectory, besides delayed wound healing (thanks EDS).

i know that going into this abdominal surgery, i have a lot more info than i did last time. i can tell the anaesthesiologist about the issues from my hip surgery, request catheterization while still under or a smaller tube, and my surgeon is aware of my EDS and how it will impact wound closure.

but im just terrified it’s going to happen again. that my pain won’t be controlled, that i’ll feel violated by a catheter, that my wounds (and internal connections) won’t heal correctly

so i’m getting surgery on friday for my SMAS and gallbladder, and the surgeons are going to place a (hopefully temporary)J tube while they’re in there so we can have guaranteed nutrition faster. i’ve had an NJ for the past month or so while admitted to the hospital. obviously it won’t just be a J tube recovery bc im having a pretty major surgery along with it but just wondering if anyone has words of advice or similar experiences, after the first week Ill be dealing with the tube at home on my own and I haven’t had to deal with a feeding tube at home yet (tho I’ve figured out my pump in hospital pretty quick w no training lol the beeping drives me crazy)

also specifically wondering if i should expect my tolerance to feeds to change at all? obviously because it’s after major surgery we will start slow but it’s going in the same spot as the NJ was so i should eventually tolerate the same rate/formula right?

just had a very frustrating conversation with one of my sisters where she told me that our other sister has told her point blank that she doesn’t believe any of my health issues. if i end up in the hospital it’s “oh why is she there this time” or “she’s just a hypochondriac”. the sister who told me said she also used to think i was a hypochondriac until we moved in together a few months ago and she actually saw every day what i’m dealing with. i get that my issues are invisible but fuck man.

i can accept that when i was a kid i was a bit of a hypochondriac, but through therapy i’ve sorta figured out that this was because there WAS always something wrong (i have hEDS and POTS and have had mild symptoms my whole life, both significantly worsened in 2023 tho) but nobody ever knew what it was so i kinda just always felt like i was dying (chest pain as a 12 yr old is terrifying). my parents didn’t give any attention or care to it unless i was screaming or crying in pain, which taught me that i needed to scream or cry even when it wasn’t that bad. it’s now gone the opposite way where i hide my pain so much because im terrified of being seen as “dramatic”.

this (plus years of doctors gaslighting) has all led to a severe distrust in my own body, to the point where i am facing major surgery for smas and my gallbladder and still have the thought in my head that ive made it all up or its not actually that bad.

so to find out that even since 2023, when i was officially diagnosed with these conditions, when they worsened to the point of me requiring mobility aids, when i literally had hip surgery (??how do u doubt that), she has thought it was all bullshit.

there’s one comment she made that has lived rent free in my head for a year now. a few weeks after hip surgery, we were at a friends wedding that i bought a sparkly cane for so i didn’t feel as bad about it. i said “im so glad i wont have to use this soon!” she said “im sure you’ll find a reason.” and that just gutted me. to the point where when i was passing out daily due to lack of intake from my GI issues, i refused to use my mobility aids because of that comment.

now, i’ve been in hospital for the past month and a half dealing with the GI issues, and only now does she believe it because my other sister told her like hello i’ve lived with her the past few months ive literally heard her throwing up multiple times a day plus the hospital admission and upcoming surgery.

just so frustrating how people’s perception can warp my brain so much to the point of making me doubt myself. and how when things get really serious all of a sudden they flip flop and have always believed you. i’m not surprised really just disappointed to hear it so point blank

just had a very frustrating conversation with one of my sisters where she told me that our other sister has told her point blank that she doesn’t believe any of my health issues. if i end up in the hospital it’s “oh why is she there this time” or “she’s just a hypochondriac”. the sister who told me said she also used to think i was a hypochondriac until we moved in together a few months ago and she actually saw every day what i’m dealing with. i get that my issues are invisible but fuck man.

i can accept that when i was a kid i was a bit of a hypochondriac, but through therapy i’ve sorta figured out that this was because there WAS always something wrong (i have hEDS and POTS and have had mild symptoms my whole life, both significantly worsened in 2023 tho) but nobody ever knew what it was so i kinda just always felt like i was dying (chest pain as a 12 yr old is terrifying). my parents didn’t give any attention or care to it unless i was screaming or crying in pain, which taught me that i needed to scream or cry even when it wasn’t that bad. it’s now gone the opposite way where i hide my pain so much because im terrified of being seen as “dramatic”.

this (plus years of doctors gaslighting) has all led to a severe distrust in my own body, to the point where i am facing major surgery for smas and my gallbladder and still have the thought in my head that ive made it all up or its not actually that bad.

so to find out that even since 2023, when i was officially diagnosed with these conditions, when they worsened to the point of me requiring mobility aids, when i literally had hip surgery (??how do u doubt that), she has thought it was all bullshit.

there’s one comment she made that has lived rent free in my head for a year now. a few weeks after hip surgery, we were at a friends wedding that i bought a sparkly cane for so i didn’t feel as bad about it. i said “im so glad i wont have to use this soon!” she said “im sure you’ll find a reason.” and that just gutted me. to the point where when i was passing out daily due to lack of intake from my GI issues, i refused to use my mobility aids because of that comment.

now, i’ve been in hospital for the past month and a half dealing with the GI issues, and only now does she believe it because my other sister told her like hello i’ve lived with her the past few months ive literally heard her throwing up multiple times a day plus the hospital admission and upcoming surgery.

just so frustrating how people’s perception can warp my brain so much to the point of making me doubt myself. and how when things get really serious all of a sudden they flip flop and have always believed you. i’m not surprised really just disappointed to hear it so point blank

eta:
thank you everyone for your kind words and support. i think i will be putting some distance between us. the rest of my family can keep her updated if they want but i think its best if i just don’t discuss my health with her anymore (or much else tbh)

friday at 12pm i’ll be getting a gastrojejunostomy, cholecystectomy, and temporary j tube placement for smas and biliary hyperkinesia.

i’m pretty nervous for the surgery, initial recovery, and lifestyle changes down the road, but i’m also so so so relieved that friday is the start of getting back to “normal” (or as normal as i can be with pots and heds).

just a little celebration post because im really trying to stay focused on the positives of this! life 2.0 starts soon :)

struggling to cope with the lifestyle changes i will have to make after surgery for my SMAS and gallbladder.

my surgeons will be doing a gastrojejunostomy and cholecystectomy. i’m pretty terrified for the initial recovery, but also the lifestyle changes following it. it may be stupid, but i’m 24, and the idea of never being able to drink alcohol the same way (it will go straight to my intestines leading to getting drunk wayyyy quicker), eat the same meals (risk of dumping syndrome and bile diarrhea), or smoking weed (i guess the smoking can fuck with the new connection to my intestines) is pretty devastating to me.

i know gj isn’t even the typical surgery for smas which i think makes it even harder to cope with bc it just feels so unfair that i have to have the procedure with the most lifestyle changes following it. my surgeons chose it bc i have severely delayed gastric emptying, so they think a duodenojejunostomy wouldn’t actually do much bc i would still struggle with the emptying.

idk im just pretty devastated right now. if anyone’s had the same or similar surgery i would appreciate some words of support. i know it’s better than the life im (barely) living right now but i just want to get back to as “normal” (living with heds and pots) as i can be.

just very frustrated right now. i’m currently waiting on surgery for SMAS and to remove my gallbladder. up until saturday, i was in a private room on the internal med floor. i was told i would only be moved to the gen surg floor after surgery.

they moved me saturday night to gen surg with the assumption surgery would be on sunday. i was put in a room with three grown men (im f24) and was essentially having a panic attack from the moment i got there. surgery didn’t end up happening on Sunday, then my surgeon went on vacation.

i got moved to a semi private room thank god with a female roommate, but im still so disregulated. i also have no idea when surgery is happening. my doctors want me moved back to my old floor so i can wait for my original surgeon to come back. the surgical fellow says the new surgical team will consult on me and decide if they can do it. so i cant be moved back until that decision is made bc if they can do surgery ill just stay here i guess.

i’m just so overwhelmed. surgery was supposed to come see me yesterday, they didnt. i have adhd, ocd, and anxiety, and all of this up in the air and lack of decision and moving rooms is really really destabilizing. i asked for psych to come back in (they saw me early on in my admission) to find a better solution for my anxiety, because i also know that prolonged pre op anxiety leads to worse outcomes, lower pain tolerance, etc.

i just want to leave. i want to go back to my private room, i want my original surgeon, i don’t like that they don’t have a plan: i really hate it here.

currently admitted to hospital for ongoing GI issues and had the great experience of fainting due to my POTS the other day. mostly okay (besides freaking out my nurses lol) but i did land on my bad shoulder and now it’s back to subluxing a few times a day. it’s not too bad but i’m starting to get the nerve pain/weakness that i get after multiple subluxations. i’m managing but it’s not comfortable.

here’s the thing, at home i would usually just ktape it and call it a day but im having.. idk second thoughts about doing that in hospital? basically at the start of this admission a month ago my doctors thought my gi symptoms were psych in nature which kinda broke my trust in them. we’re past that now bc they’ve found objective physical evidence on scans etc but ive felt like i’ve had to walk a fine line while im here to not give them any more reasons to doubt me

and idk i guess im worried that they’re gonna see the ktape and think im being dramatic or just like coming up with problems or something because while i have told them my shoulders been aching since the fall, i haven’t been telling them about the subluxations (for the same reason). and a lot of doctors i think wouldn’t understand that my shoulder can sublux without me being like screaming in pain.

so idk im having a dilemma. do i tell them about the subluxations? do i ask my mum to bring my ktape? idk just having a lot of anxiety from years of medical gaslighting.

starting off by saying ofc i will never know someone’s internal experience, and i know some people would look at me and consider me “mild”.

i follow a lot of chronic illness people on social media, a lot of young women with pots and heds, and it’s been really helpful at times. but then in march of this year i got rapidly much more ill and it’s resulted in a nearly month long hospital stay that’s still ongoing with no end in sight.

as a result ive been on social media a lot more (which ik bad blah blah im bored and brain fog makes it hard to focus on much else) and i’m just feeling a huge disconnect and honestly resentment towards the same people i used to look up to a year ago.

i catch myself playing sick olympics, downplaying their experiences because what they present on social media seems a lot easier to deal with than what im going through right now, and it pisses me off to see people talking about how hard it is to live like that when i haven’t been home in a month.

now, i know that that last paragraph isn’t reasonable, and that’s kinda what this vent is about. it’s like, i spent years needing to “prove” i was unwell because it was all invisible, and now it’s very very visible and interfering with every single aspect of my life 24/7, and then i see all these people who are still “invisible” and i resent them.

idk basically i recognize that this thought process is incorrect but i don’t know how to get out of it, and part of me doesn’t want to because i feel the worst i’ve ever felt in my life, ive been the closest to death i’ve ever been in my life the past couple of months, and ive needed the most drastic interventions i’ve ever had, and it’s frustrating to me to see people presenting with the same conditions i have but they can carry on with their lives :/

again tho, i know this isn’t a healthy thought pattern, i just don’t know how to get out of it.

eta: thank you everyone for all your comments, i promise ive read and appreciated all of them just too much to reply :) think i will try to rewire my algorithm a bit so these people aren’t popping up as much for me

so i’m on day 23 of being admitted for gi issues and it’s been a bit of a wild ride.

before i was admitted i was pretty convinced my gallbladder was the culprit. severe ruq pain after eating, especially after fatty foods, nausea, vomiting bile. had a hida that showed 92% EF and bile reflux. hyperkinetic gallbladder. except most doctors don’t know it exists/don’t believe it can cause pain.

so when i was admitted, i asked them to look into it. they didn’t. first thought was CHS, because i smoked weed for years. then they found SMAS and Nutcracker on a CT. okay an answer!! stuck an NJ tube in me, told me I just needed to gain weight and it would be fixed. a bit paradoxical to me because the pain came before the weight loss, but sure whatever.

fast forward a few weeks later, now they’re not so sure it’s the compressions because of the paradox of the pain, and the pain was continuing with NJ feeds. got a gastric emptying study, boom i have severe gastroparesis. okay an answer!!

started meds, and while nausea has improved, the pain has remained the exact same. so they start looking at psych causes and go back to the CHS(even tho i’m a month cannabis free now). yippee. that was pretty devastating, and caused a huge spike in anxiety from years of medical gaslighting all coming back. get a psych eval, psych says i have an adjustment disorder which basically means big life event (health getting worse) = stress. effectively ruling out a psychosomatic root.

new doctor comes in today, and says “have you ever heard of biliary hyperkinesia?” YES YES I HAVE I HAVE BEEN TELLING YALL ABOUT IT FOR WEEKS. brought it up totally unprompted, and said he will consult with general surgery to see what they think.

so i do have gastroparesis, which i think is causing the nausea and vomiting since meds have improved that quite a bit, but we’re still trying to figure out the pain.

so tldr: i thought it was my gallbladder, my doctors thought it was a billion different things including confirmed gastroparesis, then after three weeks my new doctor comes in and says he thinks it’s my gallbladder. now it’s the weekend so everything will stop moving, but next week i might finally get some answers and a solution :)

so i’m on day 23 of being admitted for gi issues and it’s been a bit of a wild ride.

before i was admitted i was pretty convinced my gallbladder was the culprit. severe ruq pain after eating, especially after fatty foods, nausea, vomiting bile. had a hida that showed 92% EF and bile reflux. hyperkinetic gallbladder. except most doctors don’t know it exists/don’t believe it can cause pain.

so when i was admitted, i asked them to look into it. they didn’t. first thought was CHS, because i smoked weed for years. then they found SMAS and Nutcracker on a CT. okay an answer!! stuck an NJ tube in me, told me I just needed to gain weight and it would be fixed. a bit paradoxical to me because the pain came before the weight loss, but sure whatever.

fast forward a few weeks later, now they’re not so sure it’s the compressions because of the paradox of the pain, and the pain was continuing with NJ feeds. got a gastric emptying study, boom i have severe gastroparesis. okay an answer!!

started meds, and while nausea has improved, the pain has remained the exact same. so they start looking at psych causes and go back to the CHS(even tho i’m a month cannabis free now). yippee. that was pretty devastating, and caused a huge spike in anxiety from years of medical gaslighting all coming back. get a psych eval, psych says i have an adjustment disorder which basically means big life event (health getting worse) = stress. effectively ruling out a psychosomatic root.

new doctor comes in today, and says “have you ever heard of biliary hyperkinesia?” YES YES I HAVE I HAVE BEEN TELLING YALL ABOUT IT FOR WEEKS. brought it up totally unprompted, and said he will consult with general surgery to see what they think.

so tldr: i thought it was my gallbladder, my doctors thought it was a billion different things (which could still be contributing but not the root cause), then after three weeks my new doctor comes in and says he thinks it’s my gallbladder. now it’s the weekend so everything will stop moving, but next week i might finally get some answers and a solution :)

so i’m on day 23 of being admitted for gi issues and it’s been a bit of a wild ride.

before i was admitted i was pretty convinced my gallbladder was the culprit. severe ruq pain after eating, especially after fatty foods, nausea, vomiting bile. had a hida that showed 92% EF and bile reflux. hyperkinetic gallbladder. except most doctors don’t know it exists/don’t believe it can cause pain.

so when i was admitted, i asked them to look into it. they didn’t. first thought was CHS, because i smoked weed for years. then they found SMAS and Nutcracker on a CT. okay an answer!! stuck an NJ tube in me, told me I just needed to gain weight and it would be fixed. a bit paradoxical to me because the pain came before the weight loss, but sure whatever.

fast forward a few weeks later, now they’re not so sure it’s the compressions because of the paradox of the pain, and the pain was continuing with NJ feeds. got a gastric emptying study, boom i have severe gastroparesis. okay an answer!!

started meds, and while nausea has improved, the pain has remained the exact same. so they start looking at psych causes and go back to the CHS(even tho i’m a month cannabis free now). yippee. that was pretty devastating, and caused a huge spike in anxiety from years of medical gaslighting all coming back. get a psych eval, psych says i have an adjustment disorder which basically means big life event (health getting worse) = stress. effectively ruling out a psychosomatic root.

new doctor comes in today, and says “have you ever heard of biliary hyperkinesia?” YES YES I HAVE I HAVE BEEN TELLING YALL ABOUT IT FOR WEEKS. brought it up totally unprompted, and said he will consult with general surgery to see what they think.

so tldr: i thought it was my gallbladder, my doctors thought it was a billion different things (which could still be contributing but not the root cause), then after three weeks my new doctor comes in and says he thinks it’s my gallbladder. now it’s the weekend so everything will stop moving, but next week i might finally get some answers and a solution :)

currently inpatient at the hospital with an NJ tube due to rapid weight loss from pain, nausea, and vomiting. doctors found SMAS and nutcracker syndrome on CT, but wanted to run other tests as well as they weren’t certain it was the compressions causing the symptoms, so today i had a liquid only gastric emptying study.

turns out, whoopsies, i’ve got gastroparesis. i’m not sure of the exact measurements, but my doctor said that the normal emptying speed for liquids (just had water) is about 20 minutes, for me it took 40 minutes. i’m not sure what that means in terms of severity, but very grateful to have an answer regardless.

i obviously have the NJ tube already but they don’t want to discharge me with it, so the plan is to start metoclopramide and trial solid foods in a few days (currently on clear fluids on top of the NJ feeds).

i know it’s far too early to tell anything but i am having some anxiety that the medication won’t work and ill be stuck with this tube forever. im grateful to have a way to get nutrition but with my doctors not wanting to discharge me with it it feels like ill be stuck here forever.

before the ges they brought up that they think this could be cannabis hyperemesis (ive been cannabis free for over a month now) or a gut brain axis problem, so im weirdly relieved to have a documented physical problem because i was terrified they thought this was all in my head.

also wondering if people could comment on the type of pain they get from gastroparesis? i get severe right upper quadrant pain after eating most things, and its continued to a lesser extent with the NJ feeds.

so i’ve been hospitalized for three weeks at this point due to rapid weight loss (35 pounds in 3 months) and severe abdo pain after eating, frequent vomiting and constant nausea. prior to the hospitalization, i had a gastroscopy that showed bile reflux, esophageal erosion, and chemical gastritis. also had a HIDA showing hyperkinetic gallbladder. despite those findings, the GI was convinced it was cannabis hyperemesis syndrome. fair enough, i quit weed.

a week after quitting, i had lost another 8 pounds and had no improvement in symptoms, so my GI told me to come into the hospital to be admitted for NJ feeding and more testing. during this testing they found SMAS and nutcracker syndrome. ok, an answer! NJ feeds have been rough to ramp up, as i’m still having a lot of pain, but my nausea and vomiting has reduced a lot.

my GI came in today for the first time since i’ve been admitted to tell me that after a month of no weed and absolutely no change in the pain, she still thinks it’s CHS. despite the scans showing compressions, and the gallbladder findings. she still thinks it’s CHS. because my nausea and vomiting have gotten better. sure, i can accept that maybe those were caused by weed, but it’s also very plausible that im no longer vomiting because nothings going into my stomach??

and again, the main. symptom. is. pain. and that has not changed one bit. so how does that make sense?
i’m getting a gastric emptying study tomorrow, liquids only, so we’ll see how that goes i guess. i asked her to look at the research for hyperkinetic gallbladder and she said she would. okay cool. but qualified that with “but i really do think it’s weed”. so i told this to my nurse and she told me to ask my main doctors (internal medicine) to request a second GI opinion.

i’m just so frustrated. and terrified. that they’re gonna send me home with no solutions, no answers, and i’m just gonna end up where i started, miserable and losing weight because everything i eat causes so much pain.

eta: thank you everyone for your comments, feel very validated in my decision to ask for a second opinion. unfortunately this GI is the only one on service this week, but my main doc said we can consult a new GI next week. also, gastric emptying study showed severe gastroparesis, yet another objective finding (that i’m sure she’ll find a way to shrug off)

struggling to cope with the fact that i’m no longer “mildly” disabled and ill.

i’m on day 19 of being admitted to the hospital and it feels like it’s never going to end. when i first got really unwell 3 years ago, i thought it was the worst it would ever be. after a virus, my pots became much more unmanageable and my hEDS seemed to spiral out of control.

after getting proper treatment, a desperately needed hip surgery, and mobility aids to help on bad days, i finally got to a point where i could work full time (albeit in a different career, mostly from home) and still have energy for friends, chores, etc.

then i developed SMAS and nutcracker, and i feel like all that progress got thrown out the window. my pots is back to where it was pre treatment, my chronic pain/subluxations are at an all time high, and im currently in my longest hospital admission with an NJ tube shoved down my throat.

i miss my “mild” self. i miss being able to get up and walk around without having to carry an iv pole with me. i miss the muscles i finally started to build around my wobbly lil joints. and when i look on social media (which ive been doing far too much of in hospital), all i see is people who were like me three years ago, creators i used to relate to but no longer can, and it makes me angry. i know it’s no one’s fault, and it’s not fair to resent my past self or people in similar positions. but it kills me to see people living the life i used to live.