u/megatron8686

just wanted to thank anyone who’s commented on my posts the last couple days :) i started my first NJ about 5 days ago and while the first few days were pretty brutal, today we managed to increase the rate to 20ml/hour and keep it there for the whole day with no pain!! i know i still have a long way to go til i get up to my goal rate but honestly a few days ago i was ready to give up and didn’t see how i could get through this. shoutout to the one person who suggested being totally npo while we increased, that was definitely the biggest help!! now we keep our fingers crossed that we can keep increasing and that weight gain is all i need to fix my SMAS :)

had to stop nj feeds again tonight. i know it’s normal to have some cramping, and i was doing okay with that today, but after having a bit of broth and yogurt for dinner while running at 10ml/hour my SMAS pain just got so severe so quickly. doctor ordered them to stop feeds.

i just feel like a big baby right now. i know it can be uncomfortable but this pain gets unbearable. but it doesn’t make sense to me because the tube is going past the compression. it was just too much to handle.

so now we wait again for the doctors to come in tomorrow. i don’t know what their next steps will be and im scared honestly. i feel like i failed and i should’ve been able to push through but it was just so so painful.

i started NJ feeds yesterday for SMAS. we started at 20ml/hour and it caused my SMAS pain along with some pretty bad cramping. paused it for a bit, pain lowered, then switched to 10ml/hour, which while causing some cramping and nausea, didn’t cause the smas pain.

today they advanced the NJ further bc they thought the pain at 20ml was because it wasn’t all the way past my duodenum/the compression.

since then it’s been running at 10ml, and i’ve had a steady climb of cramping, and now my SMAS pain is starting to trickle in too. i’m just confused because I seemed to tolerate the 10ml yesterday but today my body’s saying no.

idk i’m just worried right now, i don’t know what the next steps are for me. my doctors originally wanted to place a PEG-J right off the bat but I insisted we trial NJ first. i don’t know if this is just normal adjustment or if this is failing, and i’m confused why it’s continuing to cause the SMAS pain now that it’s supposedly past the compression. and maybe im wrong on this but if this is failing why would a surgical tube work better?

any advice/similar experiences would be appreciated :)

i have SMAS and after a while of waiting in hospital, we finally started my NJ feeds tonight at 20ml/hour.

I’m just getting mildly concerned because i’m getting a mild version of my usual post eating pain. like it’s in the same spot, same sensation, just not as bad. i’m confused i guess because i thought because it was past the compression there wouldn’t be pain.

can anyone with smas who had nj feeds chime in with their experiences? is this just normal adjusting or do i need to ask my team to lower the rate?

so i’m currently waiting to get my first NJ placed for SMAS. I’ve been admitted to hospital for 5 days now, and have continued losing weight. they placed an NG last night (genuinely awful experience) with the goal of advancing it to an NJ this morning. it’s now 6pm and there’s no longer a chance of it being placed today. which means another full day of barely eating anything and severe pain after the few bites i can manage. and an unnecessary full extra day of having the NG in.

just so frustrated right now, i understand that things come up in hospital but the later we start feeds, the longer i have to stay in hospital to be monitored for refeeding. they also have not been following the dieticians orders and keep giving me creamy soups instead of broth, even tho the cream ones cause way more pain.

one positive is i’ve gotten somewhat used to the NG pretty quickly. last night was genuinely awful, i was in sensory overload and couldn’t swallow at all, only slept for 4 hours (with the help of lots of melatonin). today it just feels like the start of a bad cold.

so i quit about 10 days ago due to ongoing gi issues that my doctor suspected was CHS. im now in hospital and it turns out no it wasn’t CHS i have a ?compressed artery? in my stomach.

but now i have a conundrum. CHS was my primary reason for quitting, but i did find some other reasons outside of that to help motivate me a bit more. but now that CHS is out of the picture, those other reasons don’t seem as important anymore.

idk what this post is really or what i’m looking for but idk i appreciated the kick in the ass to quit from CHS, but now that i know that’s not the reason, it’s really hard not to think about going straight back to it when i’m out of hospital. i have a chronic pain condition and weed is incredibly helpful for that, but maybe that’s just an excuse idk.

so i’m getting an NJ placed for the first time on Monday to help me regain weight to hopefully treat a Superior Mesenteric Artery compression. I’ll obv be in hospital for the first week but then after that they told me to expect a few weeks/possibly months with it to get fully weight restored.

here’s the thing, i have a massive problem with oral fixation. i vape (bad i know), and if im not vaping, im drinking water or having snacks (well not the snack part rn because of SMAS but one day hopefully lol). i also tend to have a really dry mouth.

i know my doctors will obviously tell me my specific protocol, but i’m trying to get as much info as possible before they put the tube in to try to alleviate some anxiety. are you allowed to drink water with an nj in? is it comfortable? and once i’ve gained more weight and the pain (hopefully) gets better, am i allowed to eat small bits of food with it too? would be more for pleasure than actual nutrition.

i’m also pretty worried about the sensory aspect of it cuz i can get sensory overload pretty quick. any tips would be appreciated.

hi all, first post here. i was recently diagnosed with a superior mesenteric artery compression, and im now in hospital with a team of awesome doctors trying to figure out how i can gain wait to hopefully help the compression.

they are meeting today at 1. they want to do a peg-j tube and honestly im scared. i knew a bit about tubes so i asked if we could trial an NJ first before jumping to the surgical one. they’re discussing it, but due to where the compression is they might not be able to safely place an NJ.

basically just looking for support, reassurance, any similar experiences etc. i’m pretty scared about the idea of a surgical tube but i know my team has my best interests at heart.

it’s been a whirlwind couple of days. GI doc was concerned i kept dropping weight, so she told me to go to the hospital yesterday to get admitted. I was fully expecting it to go terribly based on past hospital experiences, but i guess when you have a doc telling you to go they are a lot quicker to help.

had some internal medicine guys consult on me, and within two days, we know what’s wrong! I have a SMA compression. now if you’ve seen my earlier posts y’all know i was certain it was my gallbladder since its overactive and i was having bile reflux. apparently the compression is likely causing the reflux, and the stress on my nervous system is making my gallbladder freak out.

i’m reeling a bit because i was so certain i knew what it was and then boom it was not that, but im so so grateful right now. i have a team of specialists working on my case to figure out the best course of action.

it’s a bit spooky bc there’s talk of surgical feeding tubes to help get my fat back up (i guess that helps the compression?) or a stent to redirect blood flow, but im just so so grateful. i feel like i finally have a bit of hope again :)

kinda jus story time but if anyone has experienced the same thing (i guess this is more common with heds?) i would love to hear similar experiences

well, despite going back to work before i felt ready, my body decided that was not going to happen.
I had emailed my GI doctor the night before, saying i haven’t had any improvement on our new treatment plan and have continued to lose weight (now 30+ pounds in 3 months). i guess that finally triggered something in her to do something, so she told me to go to the hospital to get admitted.

i was hesitant bc like most of us i’ve had countless occasions of going to the er and being told they can’t do anything. turns out having a doctor on your side is a huge help. i got a bed right away, an then after making sure i was not emergent, they called in internal medicine to consult.

i. love. internal medicine. these guys were made for chronic complex cases. i’ve never had doctors so understanding and so willing to try to get to the bottom of something. they right away agreed i needed to be admitted for investigation/monitoring, so now im just waiting to be brought upstairs.

for the first time since all of this started 3 months ago, i finally have a bit of hope. i have two doctors who genuinely seem to care, and a GI who has finally decided to listen to me. i’m not sure what the plan is from here (they’ve discussed a feeding tube which kinda scares me), but i finally feel like im in good hands.

my coworker is an incompetent piece of shit. i’ve been on medical leave for the last three weeks, and had to come back early bc poor little baby boy booked his vacation for two weeks. so im already expecting to have a rough week, im still quite acutely ill, but my boss is understanding and i can take breaks when needed. just really didn’t want to leave them in the lurch for the two weeks he’s off (me and him are the only two who work on a specific company’s payroll).

well turns out this grown ass man decided to simply not do his job while i was gone. i have three weeks of pto requests, status changes, separations, etc to deal with on top of the usual weekly stuff. that was bad enough, but im a fast worker and got through a lot of it yesterday.

well today turns out he didn’t set up garnishments (court ordered debt, sorry lotta payroll stuff here) for 10+ employees. he set it up in one spot, but didn’t fill out our excel, didn’t save the orders, didn’t send the employer response forms. this isn’t just a oh we can get it done whenever thing, this is our company can face hundreds of thousands of dollars of fines because we didn’t do it on time.

so i send this all to my boss, and she just says “do what you can”. this man will have no consequences for literally doing NOTHING for three straight weeks. what was he expecting would happen if i didn’t (generously) return early from my medical leave????

it’s just so frustrating that this grown man can do nothing and face no consequences, while here i am fighting through severe gi symptoms to do HIS JOB because i felt bad. i’m honestly tempted to say fuck it and go back on medical leave and leave my boss to deal with the fallout. that’s what happens when you promote someone for no other reason than “he’s a man and he’s been here a while”. oh and sometimes his back hurts so the poor baby just can’t do any work. I HAVE A FUCKING FAILING ORGAN IN MY BODY AND I AM WORKING. god i hate him.

posted here a bit over the last few months, i’ve had nearly four months now of severe attacks of ruq and back pain after eating, vomiting bile, constant nausea, and i’ve now lost 30 pounds.

i got my HIDA and it showed 92% EF and bile reflux. my doc said it was “normal”. thanks to this sub i know hyperkinesia is a thing, but my doctors can’t say the same.

my doctor saw this, did an endoscopy that showed chemical burns from bile and an irregular z line. despite all of this physical evidence, she thinks i have cannabis hyperemesis syndrome. she is refusing to do anything until i do 90 days of no weed. i’m on day 6, which i know is too early to definitely rule out chs, but ive had absolutely no improvement and now the only the thing that was keeping me eating and in manageable levels of pain i can’t use.

i’m honestly just scared and at my wits end. i don’t think i can do this for 3 months. i’m losing 10 pounds a month, and im already down over 20% of my body weight. i don’t have any weight left to lose. and yet all my doctors are just sitting and watching like this is totally fine. my quality of life is fucking non existent at this point, and it’s bringing me back to a very dark place in my life.

i just don’t know how to get through this. i feel like im gonna die and my doctors are just gonna watch. i don’t know what to do.

looking to see if anyone knows of surgeons in Vancouver BC who are knowledgeable or at least accepting of the existence of biliary hyperkinesia? I’ve lost 30 pounds in the last 3 months, my GI doesn’t believe hyperkinesia exists, and i’m just at a loss. feel like i’m running out of time honestly.

So i’m currently starting a 3 month detox from weed to rule out CHS. I’m on day 2 and the only physical symptom i’m having is that my pots is wayyyy worse, like vision blacking out every single time i stand up vs the usual 2-3 times a day.

I’m a bit confused bc I was under the impression that quitting weed was going to HELP my pots because weed can cause tachycardia. Just wondering if anyone here has quit weed and if they’ve experienced the same thing?

I used sporadically as a teenager, took a couple years off, and then in fall 2021 started nightly use. Never a lot, just a few hits from my pipe to help me sleep. carried on that way until August 2025 when I had hip surgery. The initial gi issues that caused and convenience led me to start using a vape. Turns out that was a terrible idea for me, because it’s way too easy to just hit that thing, and even tho the THC content is way higher, the high didn’t last as long so I would hit it more.

Fast forward to March of this year and my chronic illnesses took a turn for the worse and added some pretty severe GI issues in. Took time off work, which led to more smoking during the day to get through symptoms. Now my doctor is refusing to treat what’s physically wrong with me (gallbladder and bile issues tmi sorry lol) until I quit for three months so we can rule out CHS (understandable but frustrating).

I was terrified. My nightly wind down routine felt like the only thing keeping me going through chronic illnesses and mental health issues sometimes. But I have to do it to get treatment, so here we are.

I decided to come up with my own list of reasons outside of my health, and to my absolute surprise, holy crap there’s a lot of reasons lol. The biggest one for me is time. I never realized how much time i’ve lost to smoking weed, being high, planning when to smoke weed, etc.

So here I am on day 2, doing pretty okay! Insomnia hasn’t been great, and coping with pain/nausea from my chronic illness without my main crutch hasn’t been awesome, but I really haven’t had any cravings, just like the frustration that I can’t use it to help with pain.

just wondering if anyone has advice for finding a surgeon that’s knowledgeable about biliary hyperkinesia. i have an ef% of 92 and hida also showed bile reflux. pain was exactly recreated with the cck injection. i’ve lost 25 pounds over the last 3 months due to severe pain, nausea and vomiting.

my gi is refusing to refer to surgery because she doesn’t think hyperkinesia is a real thing. i can go through my gp but i don’t wanna go through the whole process an end up with a surgeon who also doesn’t know what it is.

i’m in vancouver canada if anyone actually knows of one here, but also just looking for general advice on how to go about finding one.

currently doing a 3month detox from weed to hopefully address some ongoing gi issues. also can’t drink due to the gi issues.

i’m going camping with my friends soon and ik they’re all gonna be drinking and smoking, and im not going to discourage them at all bc that’s what campings for !! (at least for us lol)

i’m just wondering if anyone has a favourite beverage/snack/treat/alternate substance that they use when in these sorts of situations as i know i will be tempted but absolutely can’t due to my health

eta: thank you everyone for the suggestions! i think i will bring my knitting, some fidgets, and i’ll probably grab some mocktails!

so i’m very lucky in that i have a job that’s willing to accommodate me in working from home and taking time off, but after a three week medical leave i have to go back on Monday (still from home) because my coworker is going on vacation for two weeks (me and him are the only two that run payroll for a specific branch).

i don’t think im ready. ive been dealing with pretty bad gi issues that still aren’t resolved, and its led to less eating which makes my brain feel like im moving through molasses all the time, plus just dealing with the symptoms throughout the day is really rough. not ideal when you’re running a payroll for 1500+ people.

i know my job can’t fire me for taking medical leave and i could’ve pushed it longer but i didnt want to leave my boss in the lurch (really would like to move up in this company one day) so im going back to cover my coworkers vacation.

it’s only two weeks that he’s gone but im just so nervous going from not working at all for three weeks to running the whole payroll on my own for two weeks while im still medically compromised.

idk just looking for support or some words of encouragement. really cant fuck this job up

i’m scared.

i’ve been dealing with GI issues for the past few months and as a result i’ve lost 25 pounds. got a scan on my gallbladder done that showed bile reflux and biliary hyperkinesia (overactive gallbladder).

buttt my doctor heard weed and vomiting and now all she can focus on is CHS. I’m well aware it’s a possibility, i’ve been a daily user for a few years now, but i was under the impression that mechanical things need to be ruled out before landing on CHS, and i DO have mechanical issues.

so now my doctor is refusing to treat the gallbladder issues unless i quit for three months. i’m just scared. i have a chronic pain condition as well as anxiety/ocd/adhd, and genuinely i feel like weed is the only thing keeping me alive. but now i have no choice. i don’t think im ready for the mental health side of it.

eta: primarily use flower. went through a few months of using a vape, but quit that about two months ago (with no change in gi symptoms)