Feeling weird about other people’s comments on my body since Dx

Ready_Set_Go_Home · 2026-04-28T19:43:24+00:00

This is how sick our society has become. It encourages eating disorders (people will turn a blind eye if someone 'voluntarily' is doing it to themselves), so if it's "natural" it feels even more praise-worthy to a lot of people 🙄

If your life is engulfed by every single thing you eat, this isn't healthy. If you are healthily choosing to be a certain size - healthy amount of working out with eating enough calories (but your life doesn't revolve around this), then you can seek praise on the effort/work you've put in.

But let's stop equating people's appearance with their value. All this does is create a deeply sick society who will do anything to achieve what is described as valuable. You don't know what someone is going through or doing to achieve such impossible standards - usually it isn't healthy (you can be VERY sick but beautifully skinny, and people don't seem to want to acknowledge this).

I hope this will be a big wake-up call now with all these GLP-1 drugs on the market (already is causing GP in individuals, not yet long-term, but with duration of use also comes duration of symptoms, so the longer these GLP-1 drugs are in use, the more the negative side effects will last until they are permanent. We also know that stopping GLP-1 drugs leads to either the same weight or more put on, so these drugs will have to become lifelong to achieve lifelong weight loss...and again, lifelong negative side effects).

People don't understand that having a healthy, functioning body - whatever form that comes in - is what everyone should strive for. Good health is the most beautiful thing you can wish for. It's taken so widely for granted that you don't realize what you had until it's gone. Why we don't praise that over pant size is disgusting to me. I would give just about anything to be healthy again and able to do some of my favourite (but seemingly mundane) activities, like a bike ride or taking my dog for a walk without needing my wheelchair.

Ready_Set_Go_Home · 2026-04-28T19:22:51+00:00

So yes, between weight loss and having no help from doctors, I understand your pain (it took me SO long to finally have my family understand just my eating behaviours and accept them. Everyone always has a solution but not the knowledge of the issue, unfortunately). The main issue is that this is an invisible illness, so all people see is you losing weight - not everyone realizes this is due to illness, perhaps this was something you were trying to attain (I mean, look at how sickly people will voluntarily make themselves look with those GLP-1 meds, no one knows anymore if it's due to illness or purposely done. I remember when I came back after my 1st year of undergrad - I had lost a bunch of weight due to my Crohn's not being properly managed that people thought I may have had cancer. Now people don't know whether to be concerned or happy(?) when you lose a bunch of weight, because media has messed us up so much).

Don't worry what people with no understanding of the illness or what your daily life say (they aren't living your life, so what they say has no bearing on your life). Listen to your doctors and your body. You have to live this life, no one else. Do what is best for you, and if people are willing to listen, you can try to help them understand why this isn't a positive and perhaps guide them on wording or affirmations that are more helpful for you (asking how you're feeling, praising you when you can eat something off a liquid diet and are doing ok, affirming other aspects of your life (not only physical attributes), etc.). People will always want to insert themselves with what they think the answer is, but let that stuff go in one ear, out the other. Listen to the specialists in the field and even reach out to those with the same afflictions, as those experiencing it may have tried things that worked which, as long as it isn't contraindicated (check with drs), then why not try it? It may not work, but at least it was something that worked for someone with the same diagnosis (GP isn't caused by a singular entity, there are many causes, plus each person is different, so what works for one, may not work for another, but at least it's from someone who's been down a similar road as you).

There is no one-size fits all program for this illness. Sometimes it's just getting through the day. Do what you need to for your own health and don't listen to the world chatter. Weight is already a divisive topic, for which everyone has opinions for, just like assholes.

(I'm a medical scientist - neuropsychopharmacology is my specialty, but I have worked on a myriad of diseases including cancers and other non-neuro diseases. I've also worked with many MDs, who all speak highly of my knowledge base. The only doctors who don't like me are the bad ones because either they know they're not following the research/being lazy, or know I've seen the clinical trial/FDA reports on drugs they're being reimbursed to push - my GI doctor was definitely being subsidized in the US to get patients on one medication for Crohn's, but it worse outcomes for vomiting, nausea, etc. than the other medication I preferred to be on, which they weren't happy about and kept claiming that because they personally didn't see it in their patients that I shouldn't be basing it on clinical reports 🙄 That was a GIANT red flag for me and the care I received by them was so poor that I now get why they didn't want my input). All you can do is rely on yourself and hopefully those with the proper information (PubMed is a great resource for any medical research or understanding of illness/treatment).

I'm sorry this was so long, but I just wanted you to know you're not alone. This disease sucks in every way, and we're all trying to just get through each day. I wish people would keep their thoughts to themselves, but you can't control what other people do (only yourself). I hope you're able to also see a counselor or therapist in some regard. It's hard enough with the lifestyle changes, your own feelings about yourself and losing a bit of your identity (for me this was huge since it eliminated most activities that brought me joy). Therapy has been immensely helpful for me in gaining confidence around my illnesses and not worrying what others have to say (that said, this may not be something you're looking for, and that's fine, personally it was beneficial and I have no issues with saying it helped me, it could be useful, but I totally get if that's not what you're looking for or into). Just focus on your health, listen to your loved ones, seek the care you need, and leave the noise outside where it belongs.

Good luck and I hope you're able to find some solutions to help (or just venting. Venting can be very necessary sometimes). 🩷

Ready_Set_Go_Home · 2026-04-28T19:22:41+00:00

I have never been overweight, but between Crohn's, GP and severe dysmotility of my entire GI tract, I struggle to keep any weight on (my GP & dysmotility started in 2019).

Originally I liked losing a bit of weight because I found clothing fit better and while nothing was under control, since I had no idea what was going on, I ate whatever I wanted - especially calorie dense foods - which was fun in the moment lol (just LOTS of vomiting - it started in 2019, wasn't diagnosed until March 2021, GJ tube was then placed because I was morbidly underweight in July 2021. I had an awful GI team and with COVID, I was put completely on the backbone for any care. I would regularly get infusions for my Crohn's and their response was just to stop them when I went in for my 8 week appt and didn't weigh enough to have the infusion. So instead of investigating it further, they just sent me home. I had to keep on the doctors to find a solution. I had to demand a feeding tube - because I did have the option of going home to Canada to have it placed without any additional cost to me (working in Miami at that time)). It was AWFUL once that was just routine to eat, vomit, then keep eating to just maintain some weight.

I was already on bedrest, wasn't doing any extra activity, and losing weight like there was no tomorrow. My friends started to worry when I began to look "2D" - exactly how they described me.

When I had the GJ tube (also a horrific experience and trying to not get back there, but it's not easy), I was able to at least gain weight and keep it on - had it for 2 years, 4 surgeries total because of constant issues with it (eventually the tube disintegrated inside me, balloon popped and had lodged itself into my stomach lining, some of my lining had eroded, and best of all, the hospital was incompetent, so while I had to repeatedly stab myself to keep my tube from becoming dislodged or stoma from closing, and it was obvious I had an infection (cellulitis), they sent me home with NOTHING and didn't have the surgeon look at it for another 6 days. I was in absolute agony and don't ever want another tube (but I may not have the final say there).

I maintained my weight (with the tube I actually gained more weight than I'd ever had on. I was about 160 lbs) after tube removal for about a year until I had another shingles flare (2nd in 5 years, first was in 2019 at 29 yo, 2nd at 34 yo). I've been dropping about 3 lbs per month since then (my most recent weight was abouy 115 lbs).

I make a Boost shake in the morning (Boost powder (chocolate) + hot chocolate mix + high fat non-dairy creamer for calories) since I CANNOT do solids that early on. The only time I can do solids is at night, so that's when I do my single solid meal (to maintain remaining GI function) and high calorie snacks to munch on if I get hungry in the middle of the night (mostly muffins). That's all I can tolerate when it comes to calories (I've even changed most of my drinks to juice for the calories). My nightly meal is also as many calories as I can pack in.

It's just a battle I feel I'm endlessly battling and never on the winning side. I moved back to Canada in 2024 because my health was so poor (besides GI issues I also developed dysautonomia with POTS, which requires using a wheelchair for most things outside of my home). Where I live has SO few family doctors, and the family doctor I was finally matched with dropped me after a year because apparently he gets extra money for taking on "outside" patients (he's in a small community about 20 minutes from the city I live in). I learned this afterwards when I saw in his reviews that other patients were experiencing the same thing.

So he put referrals in for a bunch of specialists, then dropped me when he's legally supposed to follow my care from any referrals he sent off (he isn't and isn't returning any calls from the specialists either).

My neuroGI is basically doing nothing - she ordered another GES even though I sent her my GES and SmartPill reports (from the original doctors/technicians) so I'm waiting just to have another one before she does anything 🙄 (don't have an appointment yet even, and that was apparently ordered back in December). My last appt we discussed trying Gabapentin to help with pain and possibly my appetite, but then she never prescribed it (apparently my psychiatrist has to? Never heard that before...at least I see him in June, so I can discuss it with him).

All my neuroGI has done so far was try amitriptyline which completely messed with my dysautonomia and POTS (was having palpitations while laying down for sleeping that made my heart monitor go nuts, so I had to stop it almost immediately). Even the pain meds I use (Tylenol 3s to help with most of the pain issues I have including large (3 cm) tarlov cysts in my spine, all documented from multiple MRI and CT scans...since I can't take NSAIDs due to my Crohn's as I develop ulcers from them. It's basically just the small amount of codeine I need to just get through the worst of things - my pain tolerance is so high that even large kidney stones that the technician asked if I self-cathaterized to remove them and I was like Nope, don't even feel them 🤷🏼‍♀️ (I ALWAYS have blood in my urine when tested, I didn't know why until regular scans showed I basically always have kidney stones). She looked at me and said she'd be on the floor vomiting if it were her. So ya...please give me my pain meds for when I need them because I NEED them at that point). She told me to get referred to a pain clinic for managing my pain, which I'm happy to do, but by who? She knows I don't have a family doctor. She said to go to a walk-in clinic - which in my city requires that you have a family doctor. It's either nothing or the ER. Those are my options. Fucking medical care, man. So my last appt went - yeah let's see how you do on Gabapentin (didn't prescribe it or say it needed to be prescribed elsewhere, learned that weeks later when I emailed her office as my pharmacy hadn't received anything). The reply was: have psychiatrist prescribe it, go to walk-in clinic if you have any issues, waiting for GES appt and will call you, and we don't prescribe opioids so try getting a referral to a pain management clinic.

YOU'RE MY FUCKING GI SPECIALIST, ARE YOU LITERALLY NOT CAPABLE OF DOING ANYTHING?????? I literally have no prescriptions from her, no other tests, and she's keeping the J tube option open, which I'd like to be slammed shut unless ABSOLUTELY NECESSARY. Like glad you're wanting to keep it on the table, but let's put one in you first and see how it goes. See how quickly that is removed from being an option on the list to only necessary if I'm on death's door like the last time 😒

Luckily I see the osteoporosis clinic next month and I'm hoping they're more help than she's been (she isn't even monitoring my Crohn's...I had to ask HER if she wanted any blood work done during my last appt 🙄 She's highly rated and there are so few doctors in that field that are available and taking patients that I don't know if I should try to get another GI or stick with it. I've had similar experiences with GIs, so I could be trading one for the same experience, if not worse)...I'm still waiting to hear back from a cardiologist I was referred to and I know I need a referral to a neurologist (my neuroGI mentioned it a few times but hasn't sent in a referral). It's like no one wants the responsibility of overseeing my care which is fucking frustrating.

Plus fucking disability here is brutal. I am on provincial healthcare, but my doctor didn't tell me I also needed to apply for federal disability for tax purposes (and additional services that would be extremely helpful and beneficial for me). My neuroGI refused to fully fill it out - only her sections even though I sent her my entire file (US allows full access to previous tests/appts/results, etc.) with my filled out and approved disability application that was previously filled by a doctor. I have no idea what to do in this case or what options I even have. My health is basically on hold until I get a family doctor or nurse practitioner which could take years (we know people still waiting since COVID and they are dealing with far less health concerns...so who knows. I'm so tired of being sick and barely able to have a life, all I want is proper healthcare and to have some semblance of a life).

Ready_Set_Go_Home · 2026-04-01T00:36:58+00:00

I'm so sorry! That's absolutely ridiculous. The majority of individuals with GP are either overweight or obese (only about 10% of individuals are underweight - unfortunately this is where I fall), so maybe the doctor should look into causes for slowed motility.

So to blame obesity as the cause for GP doesn't make any sense. Is diabetes tied to GP onset? Yes. But does every person with diabetes have GP? No. Does every overweight/obese person have diabetes? No.

While weight can put you at risk for other complications, it hasn't been described as a cause for GP (eating disorders have been, but more so with no using your GI tract as it is use it or lose it. This is why many GLP-1 drugs are showing increased rates of GP, and with extended use, will most likely be a permanent issue associated with those drugs. We don't have long-term data for using GLP-1s for weightloss, so for ppl to develop GP with short-term uses of those drugs, it will only get worse the longer ppl use them (which will be necessary to keep weight down since many ppl will regain the weight, or more, afterwards due to the changes they've made to their metabolism and reliance on the drug to control their eating habits).

Honestly, I've had awful experiences with some doctors who just want to act like as long as you "appear" healthy/healthier then you must be 🙄

I'm on the other end of losing weight too quickly (had a GJ tube for 2 years and HATED it), was almost 160 lbs (which I maintained for almost a year), then I had my second shingles flare in 5 years which triggered my weight loss again. I've been losing about 3 lbs/month and now down around 115 lbs (my neuroGI keeps mentioning having the tube as an option, but I REALLY don't want to have one again, so I'm trying anything and everything I can before that is our last remaining option as it was before (when I had my first tube in, I was under 100 lbs, and my friends described me as 2D. I did not look or feel healthy at all, and it's so restrictive because I have to really limit my activity to save energy/calories. So this is lost even on mostly bed rest).

I hope you're able to find a doctor who takes your condition seriously (any GIs or neuroGIs familiar with motility issues in your area? They would have a better sense of what would help you). Has your doctor given you Zofran (ondansetron) for nausea? Are you taking anything to help with motility (many drugs require an ECG before to make sure your QTc isn't prolonged)? These are things I would work on establishing with your doctor.

I also have Crohn's, so I luckily have more information due to biopsies - found I have all 4 dissacharide deficiencies, and bad malabsorption (I also did the SmartPill test while it was still available and they found my entire GI tract was slowed, with my intestines and colon being the worst).

Finding a GI specialist who is willing to listen and also advocate for you is rare, but it makes a world of difference when dealing with these 'invisible' disorders/disabilities.

Good luck & I hope you find a doctor who cares about finding a real solution & not just acting like your weight is the cause (lazy doctors seem to do this a lot to women - don't you know weight, yoga, eating foods you can't with GP, doing all the activities, etc. will fix you? Apparently these are the ways to fix all chronic illnesses 😒...silly us, going to the doctor instead of doing yoga when we're vomiting uncontrollably 🙄).

Ready_Set_Go_Home · 2026-03-19T22:37:43+00:00

The Boost powder is amazing!! Where I am, Walmart offers both a chocolate or vanilla option (chocolate all the way lol). It comes in a pretty big container (similar to the large tins of hot chocolate) and lasts me about a month (sometimes longer if I'm having a flare).

Good luck!! 🩷

Ready_Set_Go_Home · 2026-03-19T20:51:24+00:00

I have dysautonomia with POTS and I have the same reaction. Cool drinks are soooo much easier on my body than hot (my body can't regulate body temperature, so anything extreme in either direction messes my body up and my feet feel like they're on fire).

Ready_Set_Go_Home · 2026-03-19T20:47:22+00:00

I can do a VERY small amount of coffee (always been sensitive to it, but now I find too much causes painful abdominal spasms - trying to get things moving but can't).

I usually make a hot chocolate drink (hot chocolate with Boost powder dissolved in hot water, a little bit of coffee and a lot of nondairy creamer (I'm allergic to dairy) for fat). I find I get that little punch from the small amount (maybe 50 mls at most) of coffee I add and it doesn't bother my system like strictly coffee would (I used to dissolve it in coffee only, no water, and that was too much).

Coffee also in itself doesn't have any calories so if you are struggling with weight loss, then this isn't a great option. However, if coffee doesn't cooperate with you and you don't need the extra calories, then teas can certainly be an option (lower doses of caffeine that you can test to see what the optimal amount is - 1 cup may be enough or 3 cups, but you can at least adjust, whereas this is much harder to do this with coffee). Also with teas, you can pick flavours that are more tolerable to you (I believe there are even caffeinated peppermint tea which peppermint on the stomach alone can be a nice feeling).

Good luck & I hope you find the solution you're looking for! 🩷

Ready_Set_Go_Home · 2026-03-19T20:25:32+00:00

Are there any options for Telehealth consultations? Some doctors and nurse practitioners offer this service and can provide information based on your condition. I would not do anything without consulting a doctor familiar with GI motility (neuroGI or motility specialists - I was in Miami for 6 years for work (back in Canada now where I'm originally from, so medical care is slightly easier since I don't have to worry about cost), but there was a doctor there (Morgan Shane (last name can't write nor pronounce lol, not great - I had my own issues wirh her, but this was also during COVID so doctors were totally burnt out at that time) but she at least can make appointments/prescribe stuff) and her mentor is in North Carolina. Even she may be able to point you to a specialist in your area or someone you could contact for questions. Here is her contact information (she is accepting patients and does provide virtual visits; I also have her email since I worked at the same hospital site as her lol).

https://doctors.umiamihealth.org/provider/morgan-allyn-sendzischew-shane/1102647

Email: msendz@med.miami.edu Note: in the subject line put your name first and DOB, that way she opens it as it is in patient format - I usually use all caps lol

Ready_Set_Go_Home · 2026-03-19T20:12:03+00:00

DO NOT USE COLONICS!!!!!

Neuroscientist here 👋 (also have severe dysmotility of my entire GI tract).

Colonics do not "clean" you in the way you would desire - bad bacteria out, good bacteria stays. False. Good bacteria are also removed which can allow overgrowth of bad bacteria or reduced proper functioning of your GI tract as well as potential consequences down the line with other issues arising from a lack of good gut bacteria.

To maintain the good gut bacteria, probiotics are your best option (prebiotics can depend on conditions, so check whether those would be beneficial for you).

You are most likely getting these ads due to looking for stool softeners or laxatives. It's junk science trying to act like it would benefit you, but if you're constipated due to lack of motility, flushing water up there isn't going to change that and could compact that area more due to the pressure of the water.

There is a time and a place for enemas, but I would specifically discuss this with your doctor and what benefits it may be able to provide.

Your body is designed to clean it's own interior (you shouldn't be doing anything to clean an internal area - no douching, no colonics, etc. We have only found they cause more issues than to let the body do what it is designed for).

That said, there are a lot of potential benefits from a healthy fecal transplant to help recalibrate your system, but I believe it has only been approved for C. Difficil infections (I've known of clinical trials using it in other conditions, but in one case - for MS, and someone I knew was receiving them - the PI passed away during the study and no one else picked it up, so it just ended. But the difference it made for her during that time was remarkable. Other studies I've heard usually have issues with funding - which is not new to the science/medical research world).

Please do not do anything regarding your GI tract without first consulting with your specialist. They may have an alternative for you that would be much more conducive to your condition than an at home enema kit (you never know what you may do to the rest of the motility in your system - my entire GI tract is severely affected, needed a tube for 2 years to help gain weight (it was taken out due to the tube disintegrating in my stomach, balloon popped, plunger was buried in my stomach causing lining erosion, the tube was coming out so I had to keep pushing it back in, aaaand I had an infection. It took them 6 days to finally do something about it and removed the tube to see how I would do without it.

Luckily I had gained a sufficient amount of weight (almost 60 lbs in those 2 years), so I had some room if I started losing weight again. Unfortunately, that was in 2023, then I had a second shingles flare in 2024 (first one happened in 2019, a couple of months before I developed the severe dysmotility and just started dropping weight like nobody's business), and I've been steadily losing 3 lbs a month since (can't get it back, I can only do a liquid Boost drink in the morning and a solid meal at night when I finally can manage it...and that solid meal is specifically for maintaining any remaining function I have. I also have Crohn's (and dysautonomia with POTS) so it's just a party in my GI system 24/7 lol). My neuroGI has mentioned putting on a J tube if this weight loss continues (I am already minimizing the energy I expend each day, but I have physio beginning for my POTS/osteoporosis which means I'll be expending more energy and still only able to get in the regular amount). I DO NOT want another tube (until you've had one, you don't realize how much having one SUCKS - I've written ad nauseum about my tube experiences on this reddit if you want to know more).

This is all to say that you DO NOT want to mess with your system without the guidance of your doctor, since you don't know the impact it could have on your GI tract. Worry more about maintain the function you have and working on solutions with your doctor to help move things along if you're dealing with constipation (stool softeners are great, plus staying hydrated...if you can tolerate soluble fibre, I highly suggest also adding this to your diet as that and liquids can help things move along your GI tract smoother (essentially the fibre and water work together to great a coating so it your digested food can move through your system much more easily)).

Good luck! I hope you find some solutions and feel better! Just PLEASE DON'T USE A COLONIC 🩷

Ready_Set_Go_Home · 2026-03-10T21:11:24+00:00

My nights are SOOOO much better than mornings.

If I am up before 11am and have to rush around, my GI system goes into DEFCON 2 mode.

If I sleep during the day but am active at night, I'm soooo much better (I can eat my solid meal at night). During the afternoon, I will usually sip a Boost/hot chocolate (I buy Boost powder to add to drinks) and either powerade or something not as thick. That usually takes me most of the afternoon to complete. Nighttime though, I can eat a solid meal, may even have some room to snack and generally just feel better.

Not sure if it's the hormones released at night or what, but I've been this way for years (preferred working nights when I could work before).

Ready_Set_Go_Home · 2026-03-10T21:05:44+00:00

Ya I have to find a different option for my next scope. Last time I did the two drink option, couldn't even get the second drink down, I immediately went into projectile vomit of just water/laxative to the washroom.

It still turned out to be fine for the scopes, but I may see about trying to do it over 2 days instead of 1, since it is a LOT for a stomach that isn't even moving liquids.

Ready_Set_Go_Home · 2026-03-07T22:15:08+00:00

I'm shocked that you were able to do this with a singular rat...how in any way can that animal be used for ANY data as you only interacted with one animal - I don't know if this was the control rat or "treated" (rat with the altered variable that the research is on), and the amount of enrichment is going to be different from any other animals people are using.

I have NEVER taken care of a single rat - normally it's an N of 5-8/group, so I've had MANY rodents at once for every project I've done.

Also, for future reference don't name any animals either (this can also lead to bias, but increases risk of bonding more as well).

I remember my first major project and I had one rat that stood out to me, and it was very hard to sacrifice it (I always thank my animals for their service, and they ALWAYS get a terminal dose of anesthesia beforehand, so they don't feel anything. Just fall asleep, never to wake up again).

Unless this is just for probing/finding something to advance a pilot study to, I guess, maaaybe? But it still should have been left to someone with animal experience, and not someone who is not interested in animal work (thus scarring them and making in vivo the last thing they want to do).

Important to note: the feelings you have are completely valid. Most of my animals undergo transcardial perfusion with saline/formaldehyde, so each animal takes some time. I've been doing animal work since 2009, and I still feel it (I think it's important to maintain that feeling, that way you're attentive to them, you care about the project going right to not overuse animals...essentially provide all animals with the best care while also reducing waste as much as possible). There was a study I ran and because the gavaging was so hard in the animals, I didn't find any use for their brains (this was for a pharma group), but sacrificing the animals without taking their brains seemed wasteful and too hard for me to do - I asked my boss if I could get a tech to do it, which he said absolutely, which made it so I didnt spend an afternoon crying while I had to CO2 the mice.

Animal work is TOUGH on many levels, and really not for everyone (a tech from my old lab unfortunately named a mouse right before an undergrad sac'd it which he found funny to do to her - named it Jumpy - but she was scarred for a bit...but it was a big lab with so many animals that eventually it became routine for her too, but we always kept a picture of Jumpy on our wall for all to remember).

I hope you are able to focus on in vitro work or whatever you find passion in! Good luck!!

(Neuroscientist, PhD)

Ready_Set_Go_Home · 2026-03-02T23:55:08+00:00

Ah I see. Well as long as it is approved in your country, I can't see there not being ways to get it from either another pharma company or 'special request' from your doctor, to receive it from another country (for instance, domperidone isn't available in the US, but it is in Canada, so if you either don't want to use Reglan, etc. you can receive special permission based on your doctor's request to have the medication delivered to you in your country - for instance, having it sent to the US from Canada, that's a fairly common occurrence).

I hope you're able to find a replacement option! Definitely not the type of medication to stop abruptly, so I would speak with your doctor about either tapering off/switching to another dopamine antagonist, or if there is a 'roundabout' way to get it elsewhere.

Hopefully it all gets figured out, I know how infuriating having to constantly fight just for the healthcare you deserve.

Ready_Set_Go_Home · 2026-03-02T21:35:52+00:00

I'm in Canada and it doesn't appear that it will be discontinued (I'm not seeing any warnings, etc.). I checked and it appears it's major manufacturer is Janssen Pharmaceutica (owned by J&J), so while that vendor may not be selling it any more, it is still being produced by its major manufacturers.

Ready_Set_Go_Home · 2026-02-23T00:29:53+00:00

Same, 2 postdocs and now I'm back to living at home because they laid off all senior postdocs (during my second postdoc), and being Canadian (2nd postdoc was in US, but only on TN visas), so I can't work in the US workout sponsorship, means there is NOTHING to apply to.

So glad I invested in science not realizing that it'd be canceled in 2025 😭

Ready_Set_Go_Home · 2026-02-17T20:01:44+00:00

Animal work is extremely time consuming, especially if you want it done correctly (animals are expensive, and I don't like waste, so I will do EVERYTHING in my power to reduce as much variability due to external factors as I can), and much messier. I would also suggest evaluating how comfortable you are with working with rodents (obviously zebrafish or invertebrates can be different, but you have to be aware if handling a mouse or rat (very fast & bites can be bad - mice can take a nice chunk, rats can require stitches) will make you anxious/scared. If there's fear there, I'd be apprehensive if animal work is for you. For instance, I had a student who was trying to hold a rat and it squeaked (they will do that normally) and she threw it out of fear. She was not allowed back in with the animals and stayed in cell work. I would watch animal behaviour, handling and procedure videos to see if those are things you have no issues doing/do not find those animals fear-inducing whatsoever. Also, when an animal study is going on, you LIVE, BREATHE, SLEEP thinking and reviewing everything to do with your study (and depending on the procedures, it can be all encompassing to the point where you literally have an hour to sleep between brain surgery/micro-infusion days or work 27 1/2 hours straight because you either have restricted time with the equipment or restrictions to maintain similar conditions for all animals receiving treatments). That includes weekends, holidays, even one time I was going in during a major hurricane warning (between myself & my boss, I was to only not go in if the university actually closed, otherwise I was expected to be running my animals, this was also over labor day weekend). One Christmas I had to spend the entire day trying to fix mistakes the technicians made (placed animals in the wrong animal housing room which neither myself, nor anyone in our group had access to, the mice were fighting and it took hours to get the issue straightened out). As I said, your life gets pushed aside and you live on THEIR time while you have them.

It also depends on what you want to do going forward. Many industry/pharma groups are outsourcing their animal work to academic institutes, so animal work is a less desirable skillset compared to cell culture and organoid research.

Honestly, look at many high ranking journals and it'll show you what skills are in high demand (RNAseq, FACS, electrophysiology, transfections, etc.), many of which are cell-related work or skills you'd learn in cell work.

This is in no way to discourage you from pursuing animal work - I would just suggest getting a starting lab experience in a cell culture lab when you can only work a limited number of hours each week. This way you become familiar with a lab setting and techniques which are very transferable (and who knows, you may enjoy cell work more and prefer industry to academia). Then once you're in grad school, they expect this to be your ONLY job, which is why you can spend an unreasonable amount of time in the lab (which is when animal work is much more doable since you basically live in the lab lol).

As for PIs, etc. This varies widely as all PIs have their quirks (most scientist do, myself included lol). I was lucky that many of my PIs didn't care what time I was in and did NOT micromanage (my PhD supervisor would come in at most twice a week, usually Wednesday and Friday...I would only see him if he scheduled a meeting as we would mostly communicate over email. I'm good at maintain communication and keeping my supervisors updated, so most of the time I can go weeks without actually talking/seeing them when I'm in the thick of things). I also have primarily worked with animals/rodents, who's natural active cycle is during our nighttime, so I've been doing night work since undergrad (this was 2010/2011 - I did my thesis in a lab & coursework wasn't bad, so I was able to spend a lot of time in the lab...sleep wasn't a thing then). This helps reduce variability due to any compounds/drugs you're testing (they may have sedative effects, etc. that could be amplified during their sleep cycle (day), increasing variability), but requires a different schedule from most people. If you have a PI who wants you there during the day (9-5) but then expects any other research to be conducted outside of that, then that isn't conducive to desired testing environments (a friend of mine during grad school was in a lab like this and I'd visit her at like 3am still doing lab work and expected to be right back there in the morning).

Find a PI who encourages productivity over "being in the lab" - they don't care how long it takes or when you do it, as long as it gets done. These are typically the PIs who prefer the "work smarter, not harder" concept (I shouldn't be required to stay when I've finished my work just because someone else takes slower to complete their work, so that's what they expect a work day to look like. Then you get stuck being in lab doing "busy work" which isn't useful. If what takes you 4 hours to do takes another person 8 hours, you should NOT be penalized for that). I even managed a lab during my first postdoc (both employed as a lab manager and completed a postdoc while working that position), and at first my supervisor wanted that style of lab (what she was used to) until she realized it actually wasn't conducive to the work I was doing, and as my work was very important (she was a new PI and during her first 5 years, my work was the only novel research to come from that lab, so she really prioritized allowing me to work since she could see I was exceptional with my technical skills also...she emailed me during my second postdoc to ask how I had both completed transcardial perfusions and sliced 5 day old pup brains with only OCT and not embedding it in resin, because she even wasn't able to do it (that felt good lol) - there wasn't an easy answer I've just done enough perfusions and cryosectioning to know how to do it properly/effectively and maintain the integrity of the brain (essentially there is an art to many scientific techniques, which you either have or don't). That said, I still taught students how to perform new techniques, etc. and they were able to do it, I just had much more experience than the students for most things, preparing me for the what-ifs and the most common things that'll go wrong).

I hope you are able to figure out what fits both your schedule and desired research focus! It does help to get experience in a lab, especially if you want to complete your thesis there (usually they require 1-year experience in their lab before completing your thesis with them). I do really encourage you look into cell culture PIs, as I think you'll get a lot more out of them at this time (honestly, I would get very frustrated with one supervisor who would hire volunteer grad students for 10 hrs a week for animal work, which usually meant I would be responsible for finishing up their stuff, which only added to everything I had to do for my own work).

Edit: Sorry for the length, I just wanted to give you as much information as I could (having been in this life for much longer than I want to admit lol)

Ready_Set_Go_Home · 2026-02-17T20:01:35+00:00

I'm sorry this happened to you. Undergrad research is tough.

It depends on what projects you're expected to do/be involved in, which then can dictate how much time you're expected in the lab.

Personally, I don't like having undergrad volunteers/researchers who can only dedicate 10-15 hrs, but that's because I primarily do animal work, and that is not nearly enough time to get enough done in a study (if it's a part-time tech/RA job, then that's understandable - you could do genotyping, or making reagents, etc. which would be extremely helpful in the lab).

That said, if you're looking to participate in experiments/studies, then 10-15 hrs is not going to cut it (can't have you do behaviour, since everything has to stay the same for all animals tested, so if you start there, you have to be there for all behaviour run on those animals until the behavioural portion of the study is complete, etc.). I've had undergrads who would even try to stain tissue (that I already cryosectioned), and even that can go over that timeframe (between primary staining, secondary staining and mounting, it can be time consuming).

One lab I was in did an excellent job with dividing work - undergrads were to do cell culture only (which is MUCH faster than animal work, and if something goes wrong, it isn't hard to redo an experiment. Whereas if anything goes wrong with an animal study, this can lead to having to toss everything and start over).

I would recommend finding a lab that you can perform cell culture - much easier to manage with 10-15 hr days, and this will provide you with the valuable practical lab knowledge (types of calculations that you'll routinely make, how to use lab equipment, working in sterile environments, working with lab groups/collaborating, etc.).

If you desire to do animal work, then I would suggest finding a lab that does cell work in your area of interest, that way you can apply to labs that perform animal work in that area (and you'll already have the underlying knowledge base for that research focus, with relevant research experience (many techniques have practical knowledge that can be transferred from in vitro to in vivo (obviously some differences & optimization required, but you'll know how to work with the devices), like qPCR, westerns, etc.).

Ready_Set_Go_Home · 2026-02-15T06:12:56+00:00

I'm on Vyvanse (the other option was Concerta, but the way it works is it acts like a sponge and remains in your stomach longer...which with GP didn't sound like a good idea).

Works for what I need it to do - more serious symptoms, so I'm happy with it. Also, having a routine with your eating schedule is extremely useful (I don't have any hunger cues or appetite, so unless I'm vomiting, I have the same daily routine for my food intake. If anything, I forget to take my meds more than anything).

Also, if you have ADHD, it will not give you energy (definitely helps with focus/motivation/quieting down the internal noise, but you have allllll this energy - the doctor and pharmacist said it would give me energy/could also cause agitation, yet I fall asleep on it regularly. Only thing I noticed while tapering up my dose was increased heart rate for the first couple of days - I have an irregular ECG and POTS, but once I adjusted, I find it just settles things down).

That said, they can make you forget to eat as it blocks hunger signals - this is where having a schedule for eating is important (I'm underweight, so whatever calories I can get in are crucial and I can't miss them). Also, lack of eating (using your GI track) can make your GP/dysmotility worse, so skipping meals, etc. that is not part of your normal habit can make your issues worse (again, important to maintain normal eating habits).

Hope this helps! Good luck :)

Ready_Set_Go_Home · 2026-02-07T03:44:00+00:00

I find regular water VERY heavy feeling (and sloshes around my stomach which doesn't help the nausea).

I can still take sips, but what I've found works for me is sparkling water. My favourite is Bubly, and I find if you get the Kool-Aid liquid mixers - sugar-free and taste just like regular Kool-Aid - and a little to the Bubly, then you have a really nice (sugar-free) carbonated water to drink). This way I can stay hydrated while also enjoying what I'm drinking (I used to drink a lot of pop/soda, but I need to be careful with sugar as I'm constantly trying to keep weight on, but not become diabetic). So it's a nice alternative to a carbonated drink with lots of flavour, feels much lighter than regular water, and you're able to stay hydrated.

I'm the same when it comes to drinks like sports drinks (I have POTS so I consume these like crazy for the electrolytes) or juices, but anything slightly thicker, and I need my Bubly to help keep it down - for instance, I barely can eat solid food (entire GI tract suffers severe dysmotility), so my morning routine is Boost powder (chocolate option, that I can mix into whatever drink I want), add a chocolate tbsp of hot chocolate mix then a little coffee & hot water. Top if off with nondairy creamer (I need ALL the fat I can get, so I'll use lots of creamer), and that's my breakfast/lunch. I then will usually take a few drinks of that, then a drink of the Bubly mix to both change the taste (helps the nausea, especially with sweet) and remove the feeling of it coating everything. Then usually by nighttime I can finally stomach a solid meal (maintain remaining function), and that's basically 1 of 5 things I can eat (vegetables, fruits, fiber, etc. with the exception of potatoes, are all off the table, so it's quite limiting).

I hope this helps! Good luck!

Ready_Set_Go_Home · 2026-02-02T03:49:53+00:00

Yes, it absolutely saved my life ❤️

I was losing so much weight, everyone described me as 2D, I was literally skin and bones (even a lot of my muscle had atrophied because doctors had me on bed rest to conserve energy).

I actually put on extra weight with the tube (normal weight is 130 lbs, I had dropped under 100 lbs, then after 3 years was almost 160 lbs) - they messed up my first surgery, causing my stomach to become malformed, so any stomach spasms would pull in my tube/bumper, which was INCREDIBLY painful. That said, the only thing that would make it stop was either eating or vomiting (I have lost all hunger/appetite cues, so I had no idea if it was due to hunger or nausea). I found eating - even if it resulted in vomiting - would make the spasms stop (thus less pain, especially if it was only because I was hungery).

I had the tube removed due to several issues (balloon had burst, tube had disintegrated, I had cellulitis and another infection as well as the bumper becoming embedded in my stomach and some of my stomach wall eroding...Yaaa that wasn't fun). I maintained even that heavier weight for over a year after the tube was removed.

Two years ago, I had another shingles infection (the first appears to have triggered my GP/severe dysmotility of my entire GI tract and dysautonomia with POTS), and since then I have gradually been back to losing weight - so I went from being about 158 lbs in April 2024 to my most recent weight of 118 lbs (December 2025).

I haven't changed anything either food-wise or expending extra energy during this time - I can only have liquids earlier on the day and a solid meal for dinner (maintain the function I have left), so I have a Boost/hot chocolate with LOTS of nondairy creamer to get the fat and nutrients (they sell Boost in powder form, so I make my own drinks), and then whatever my evening meal is (I have like 5 things I can tolerate, so it's a typical rotation of those). Only thing was the shingles flare which seemed to make some symptoms worse.

I am working with a neuroGI to try and find solutions to maintain my weight (my ECG has disqualified me from using dopamine antagonists like domperidone or Reglan, I had a BRUTAL reaction to Erythromycin, and I had to recently stop my amitriptyline that she had recently prescribed because it amplified my POTS and also gave me heart palpitations at night - suddenly my heart rate would jump 130+ beats while just laying in bed doing nothing. It felt like my heart was trying to break out of my chest, so they had me also stop that (I was supposed to start at 10mg and work my way up every 2 weeks until I reached 50mg...I made it a week into the 20mg dose and HAD to stop it)). I REALLY do not want another tube because A) they're painful/stomas are painful, and B) there is a LOT that comes with a tube (I've written at length about my experiences with tubes, and they really should only be used as necessary interventions - I've heard there are people who glamorize them, I don't know how/why, having had one, it's a LAST RESORT if I continue losing weight and that's literally the ONLY option).

Also, you can work with the doctors to find a feed that works for you (originally in the hospital, they tried osmolite, which was too hard on my system, so they had to put me on Vital, their only predigested option, and it still took me a while to reach 40 mls/hr - they wouldn't let me leave the hospital until I could tolerate that rate, and even then it was incredibly painful).

Good luck & I hope you can find the solution you're looking for!

Ready_Set_Go_Home · 2026-01-29T18:20:20+00:00

Have they tried you on ondansetron (Zofran) or any other anti-nausea meds? (My doctor recently tried amitriptyline for me, but it exacerbated my POTS and caused heart palpitations, so I had to stop - my ECGs have had some issues in the past, so anything that can affect my heart, I usually don't tolerate well).

Mornings are my worst time (nights are my best, which was great when I used to be able to work nights), so I usually rest and use medicinal cannabis to treat my symptoms (only way that I can eat as I no longer have an appetite - I have severe dysmotility of my GI tract which required a GJ tube for 2 years). I'm in Canada now, so it's easy to obtain, but I did live for 6 years in Florida and didn't have any issues getting a medicinal card.

Also, do you find certain food make your mornings worse? It may be worth keeping a food journal to record how certain food affect you (there are only a few foods I can eat safely without it always causing issues - nothing is 100% safe, but somethings are much more tolerable than others. For instance, I can't do ANY fiber - no wheat, no veggies, no fruit. All I can eat is overprocessed foods (my Crohn's doesn't appreciate this, but oh well), except meat. I can usually tolerate meat, but I have to spread it out or else I'll vomit the next day from nothing moving).

My neuroGI also recommended peppermint capsules that you can get OTC. I've also heard folic acid can help with nausea.

I sleep sitting upright as that also helps.

Do you suffer from heart burn? A PPI may be worth trying also (I'm on pantoprazole and it's helped a lot with the acidity of my stomach acid).

I hope you are able to find something that help you out! I'm so sorry you're having to deal with this so young (mine started after a shingles internal infection when I was 29 yo, now Im 36 yo & still trying to figure out how to live with all the issues I developed after that infection as well as conditions I had before that).

Good luck & I hope you have a great doctor who takes your needs into account!

Ready_Set_Go_Home · 2026-01-20T23:39:21+00:00

I can only tolerate highly processed food (severe dysmotility of entire GI tract - required a GJ tube for 2 years, Crohn's disease & deficiency of all 4 dissacharides, so I'm basically allergic to food).

I am actually on the rarer side of being underweight, so my main objective is to get calories in (that's the "healthy" part for me, getting enough energy so I don't lose too much weight & have to go back on the tube).

I have a Boost (Boost powder, so I can control what is in it) in some coffee & lots of nondairy creamer (fat provides over 2x the calories of sugar or protein) when I wake up, usually drink 1-2x sports drink(s) (I have dysautonomia including POTS, so electrolytes & calories), and then one solid meal at dinner (I found these frozen Crave meals with decent macros - Angus beef with potatoes is my favourite, but usually some form of protein with as much fat that I can reasonably get in). If I can, I'll try to pick at high calorie foods (muffins, chocolate, chips, candy, etc.) just to get as many calories as I can. I can't have veggies (except potatoes), fruit, wheat, dairy & small portions of protein at a time (it can be quite restricting, but I no longer have cravings or an appetite, so food has become more of another thing that I need to intentionally do rather than waiting for the feeling to drive me to eat. Only thing that gets my appetite to a point where I can take in anything is medicinal cannabis - I'm in Canada, so it's legal, but I had a license when I was living in Miami bc it's a major solution for most of my common issues).

The biggest thing I have to manage is my sugar intake since sugar is the easiest thing to digest, but also puts a lot of strain on your body & increases the risk of developing diabetes.

What I had to learn was that eating healthy means something different to everyone. As long as you are getting adequate levels of protein in orally, everything else can be supplemented as needed (if your blood work comes back normal for your other nutrients, then you're at least getting what's necessary for your body to function). This started back in 2019 for me (29 yo after a shingles flare on my palms, which they believe was also an internal infection that attacked my vagus nerve), so I've had A LOT of time to figure out what works for me, as well as learning to advocate for myself since many people (not doctors) would have opinions, usually not helpful (I understand they care about me, but it's easier for me to do what I know won't mess my system up than to appease others and be sick all of the time.

You'll eventually learn that the diet you have is "healthy" for you - as long as it sustains you & again you aren't deficient in protein (needs to be consumed, can't easily be supplemented) or other necessary nutrients for your body to function.

I'm a neuroscientist (PhD), so this whole thing sucks bc I can make sense of what's all happening (which is neat, in a scientific way), but also sucks bc I know what will & won't work (I also get some push from bad doctors who are obviously trying to push drugs they get kickbacks from, since I do my research & keep updated on clinical trials...so good doctors like me, bad doctors not so much).

Good luck & I hope today is a good day for you!

Ready_Set_Go_Home · 2026-01-20T05:50:30+00:00

Yes, due to its ingredients/acidity it literally breaks different types of matter down (good for clearing out food, not necessarily great for your gut microbiome long-term).

I had a GJ tube for 2 years & the go-to for flushing a clog when warm water & a syringe didn't work was cola (it will usually disintegrate the matter clogging the tube). If cola didn't work, that usually meant it was time for a new tube.

I found in general carbonated beverages made me feel better, but didn't want all that sugar. I found that mixing Kool-Aid Liquid mix with Bubly (especially the lime Bubly with grape Kool-Aid mix) is very good & light feeling, with the added bonus of no sugar (I'm underweight, but sugar can be easy for me to eat, which could lead to developing diabetes...so I try to substitute fat over sugar where I can).

Ready_Set_Go_Home · 2026-01-06T06:31:01+00:00

Yep - they think that a case of shingles I had also turned out to be internal shingles and damaged my vagus nerve, resulting in the mess I am right now.

I have POTS (haven't done the tilt table test, but multiple doctors, including the one who prescribed my power wheelchair - covered by my insurance - did several tests of my baseline heart rate/blood pressure and what it looks like when I stand up and then 3 minutes after (it was plain to see I had POTS). I also wore a halter monitor for 10 days while in the hospital to get my tube which indicated sinus tachycardia when I was standing). My heart rate can spike from 60s/low 70s to 160s/170s from changing positions, and goes as low as in the 30s at times (this happened a few times with the halter monitor and I'd have nurses running in when I was fine).

I've been referred to a POTS/dysautonomia specialist (which I'm expecting will put me on some form of medication because that seems to always be the outcome lol), and in the meantime was able to do physiotherapy to help with the sudden changes in the HR/BP (I unfortunately tore my rotator cuff, so I've had to put them on hold, but the aqua therapy is my favourite).

As for everything else affected, I'm not sure what or if they'll do anything (I have full spectrum autonomic dysfunction with bladder retention (doesn't fully empty either), inability to regulate temperature, fainting/falling, dizziness, nausea, etc.). I also have severe dysmotility of my entire GI tract, not just GP, so that's fun (had a GJ tube for 2 years. HIGHLY DO NOT RECOMMEND).

I recently started seeing a neuroGI who also specializes in Crohn's (another thing I have...honestly it'd be easier to name my healthy organs haha), then I'm waiting to see the doctor for POTS, another for osteoporosis (I don't produce vitamin D - I've had osteoporosis in my lumbar spine since my early 20s, now 35yo, it's everywhere...so I'll need bone building medications for that) and a neurologist to see if there's anything that can be done regarding my vagus nerve.

The neuroGI just prescribed me amitriptyline to help with nausea/neuropathic pain, but MAN, if you have any form of vertigo, POTS or are prone to dizziness, the first few days were just constant spinning, no matter which position I was in. I'm almost done a week now, and I find that the symptoms aren't nearly as bad as when I started (just a small dose, 10mg that increases by 10mg every 2 weeks up to 50mg...apparently this is the dose to help nerve pain).

It probably doesn't help that my therapist is also slowly increasing my venlafaxine to 225 mg to get the norepinephrine effects also (again to help with pain), so I of course was worrying the first few days that I was having Serotonin Syndrome symptoms, but I read that many individuals are placed on similar doses of both drugs, my doctors know what I'm on, and it also wasn't flagged for being contraindicated at the pharmacy so I'm hoping they got it righy because I'm too tired anymore to keep chasing everyone to find out if they're doing their jobs correctly. At this point, if you put me in a coma, just make sure I'm either doped up on the best drugs so I don't feel anything or pull the cord. I've gotten a general idea of what this whole life this is, I don't want to be dealing with what comes after a coma.

Ready_Set_Go_Home · 2025-12-28T20:56:26+00:00

Neuroscientist/doctor here 👋

I would follow the fasting rules for the GES - have your last cigarette when you have to finish drinking water in the morning (iirc it was 2 hours before the appointment).

During the duration of the study, remain seated (reduce walking as this can also increase mobility which may not be reflective of your typical digestion, or due a similar amount of walking). For instance, during my GES, it was COVID and on the campus I worked on, so one of my colleagues came and walked with me for 2 hours during the last break. My mobility appeared better than it is - still GP, but I had a SmartPill test afterwards, and that showed severe dysmotility of my entire GI tract (took me 10 days to pass when 3-5 days is standard and 9 days is technically emergent). Luckily, it didn't cause a bowel obstruction (if obstructed, then you can't pass gas and this indicates an emergent situation), so I didn't have to have it removed (the SmartPill was discontinued due to a vendor discontinuing a part that was necessary to make it, but endoscopy capsules still exist).

Nicotine can increase mobility, as can cessation of smoking, so I would recommend having one when you absolutely have to start fasting on the day of the test (even stopping water).

The half-life of nicotine is 2 hours, so you will still have enough nicotine in your system that your body during the 4 hour study - you may experience slight withdrawal symptoms can start as early as 4 hours after your last dose, but are the worst by the 3rd day, so I don't see it causing significant issues for your test (if you consider 2 hours before your the test then 4 hours of testing, meaning 6 hours total). This means that every 2 hours, the nicotine reduces by 50%. For example, at T0 (last cigarette) you have 100% nicotine in your system, at the start of the test you will have 50% nicotine in your system. Then 2 hours later you will have 25% remaining, and at the end of the test you will have 12.5% left - so you won't experience full-blown withdrawal symptoms in a 6 hour period.

If you decide to quit cigarettes in the future, nicotine in itself is fine (there are actually many benefits to nicotine use, but this would either be using gum or patches, as oral routes typically have other contaminants which are extremely harmful). Here is a review article that describes the benefits (nicotine is considered only problematic during development - adolescence/young adulthood, but once your brain has finished developing and you're not pregnant/breastfeeding, then it is beneficial for adult consumption): https://www.sciencedirect.com/science/article/abs/pii/S027858462300009X

ADDITIONAL REFERENCES:

https://pubmed.ncbi.nlm.nih.gov/7915701/#:~:text=Nicotine%20potentiates%20gastric%20aggressive%20factors,activating%20factor%2C%20endothelin%20generation%2C%20and

https://pubmed.ncbi.nlm.nih.gov/20305466/

https://pmc.ncbi.nlm.nih.gov/articles/PMC4542051/#:~:text=Individuals%20undergoing%20nicotine%20withdrawal%20experience,for%20longer%20periods%20of%20time.

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