u/spider_bunny

I'm about a week post op for my first tube, it's been a rough one, and Ive read generally that it takes about two weeks to really start feeling "normal" again for most people.

But is it more comfortable to bend and move around after having the T sutures removed? I'm fighting for somebody to remove them for me because interventional radiology where I had it placed isnt wantinh to remove them/follow up.. I'm just hoping once I find someone willing that it will be way more comfortable.

2, will I ever be able to lay on my side again? I was always a side sleeper but because of how much it pulls it hurts to even try.

And finally 3, can anybody else with a gj feel their j extension? Like it kinda feels like in some cases like it could be poking me from the inside maybe? But it's hard to say if it's that or internal bruising still. I think it's the j extension though because it hasn't really changed in severity when I accidentally move wrong and it seems to follow right where it goes into the jejunum. It hurts so much to laugh because of it, I want that to get better cause I miss laughing with my partner 😭

Tw I'm going to describe my traumatic experience that this surgery was-- marked NSFW just in case

And mention of potentially addictive drugs used as painkillers

My family drove me two hours for an interventional radiology placement of a gj tube on Wednesday. I had to go through IR because there was an obstruction that made it dangerous to place using the upper endoscopy method. Originally, my doctor (attempting the first placement) said I was solid to stay inpatient for pain management after the procedure, but it didn't end up happening that week due to the obstruction so I was referred to IR and he suddenly changed his mind about me staying inpatient. Still making phone calls on the way to the procedure to get him to ad an inpatient order to my referral for post op, and he wouldn't, but it was getting to late to make any more calls by that point so I was just stuck because IR couldn't admit me without the order to do so from my referring doctor.

We get to the hospital, go through the whole process of pre op, then it's time for the procedure. I was under the impression initially that I would be under general anesthesia like the first time, NOPE, but I didn't find out until I got to the procedure room. I figured it would be okay, they assured me they would keep me comfortable, so I agreed to continue with everything since this was medically nessecary anyway.

HOLY HELL. they gave me fent to stay in a conscious sedation and local lidocaine but it kept wearing off and they had to do multiple injections, so I was randomly telling them to stop because I could feel everything they were doing intermittently, I mean I knew there would be pressure and discomfort but I wasn't expecting anything to the degree I was experiencing.. I was crying and whimpering and half way through started wretching, it was awful. I was trying so hard to just ignore it and let the meds take me to sleep but it was just too much. They told me most people don't even remember the procedure but I unfortunately remember everything 🥲

Then post op:

It was an outpatient procedure, and I have FND along with other health problems so when my body goes through something traumatic- it just stops working. I couldn't transfer back onto the bed so they had to scoot me on one of those large transfer boards. By the end I thankfully still had some painkillers in my system but good gravy did it wear out fast. My mom and fiance sat in post op with me and I. Couldn't. Move. I was crying and screaming out in pain and for whatever reason they couldn't give me ANY pain meds after because of their stupid policy... I know it was because of people being easily addicted to pain meds but I genuinely needed something. I mean it wholly when I say it felt like a fresh gunshot wound. One of the worst pain levels I've ever had in my life.

My nurse was wonderful and she did everything in her power to make me comfortable and she made tons of calls and got other people involved to do something for me but none of her bosses were having it, and she couldn't give me anything without risking her own job. I don't know what I'd do without my mom and fiance there, they faught for me and made a huge stink at the nurses station to get the IR division head doctors involved to finally do something and to come see me. They left me screaming and writhering and crying in pain for nearly three hours before my nurse was granted permission to give me anything for the pain. Eventually the head docs came down and said they could admit me but Initially I was told to just make the two hour drive home like that and take some Tylenol 🫠.. they finally did admit me for a one night stay for pain management and education but yikes.

I'm I think 3 days post op now? maybe 4? Idk I've lost my sense of time. I'm home now and I still am having a super hard time sitting up, I haven't left my bed since I got home but I'm really trying to move around and change positions the best I can. They did give me a short prescription for some painkillers and I've been swapping between that and Tylenol. Hoping to be able to sit up unassisted soon.

If anyone has any tips or tricks to help the healing process or pain management that would be awesome, or even just ideas to help curb the boredom! Hoping to at least get the energy to maybe play some Minecraft or something lol. I've mostly just been doom scrolling and watching YouTube to pass the time.

But if you ever find yourself getting this or any other surgery, BY GOLLY bring people you know will advocate for your needs. I'm very thankful for my mom and fiance, I don't know what I would have done without them because I was literally incapable of advocating for myself. I have another potential surgery waiting to be scheduled and I am definitely not looking forward to it at all if it's going to be anything like what this was

Hey y'all!! I'm having my gj tube placed next Wednesday and I wanted to get some tips and tricks y'all have kinda figured out regarding supplies. Was supposed to have it placed last week but there was a minor complication lol.. (they found an obstruction and didn't want to accidentally perferate my esophagus)

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I plan on being able to eat then drain my food that doesn't digest out the g portion so I can still somewhat participate in family meals or social eating or cravings, but otherwise I plan on using a nestle formula in the j portion for my consistent baseline calories, then trying to eat a little bit to see what I can get through depending on what kind of digestive day it is.

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I'm more than likley going to use a drain bag rather than a syringe for drains, but I'll have to experiment..

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Bonus: if you're a wheelchair user, where do you store your feeds while using a manual or power wheelchair? I use both and swap back and forth between those and my walker all the time so I gotta figured out a good method to keep everything out of the way and without getting caught on anything. Got an IV pole for if it's a bedbound day or if I can walk around the house unassisted but I'm no sure what to do for my manual and power chairs. Is a backpack the best thing? Also I should specify I don't know yet if I'll be receiving a pump. I'm going to advocate for one however so I can go out during the day and so I can use my wheelchair at home when I need to work feeds

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I just want to say that I have felt so glad to be welcomed by other people in the chronic illness and disability community despite unfortunate circumstances, loss of independence, death and near death experiances and so many things- true connections have been formed here because of real understanding. We feel it all together 💖

This is a question that I ask out of curiosity for what gives FND patients the super unfortunate stereotype of things like "feigning"?

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While I am aware that there are many people who can't accept their diagnosis due to being presented a poor understanding of the condition or unwillingness to acknowledge and assess their mental health as part of treatment, this definitely isnt exclusive to FND. I really don't think anybody could truly fake something as this disorder for such a sustained period given how complex and disabling it can be

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I am a person with FND alongside many other health anomolies, so I can speak for myself and the FND community that it's very bothersome to not be taken seriously. Nobody suddenly chooses to be suddenly paralyzed one day or to smack their head on a hard floor because their brain disconnected from their body and began seizing. I'm sure you have actually had people with factitious disorder present themselves, but that's an entirely different disorder from FND so I'm really curious to know how we for that title

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I want to specify I'm not looking for treatment in this subreddit or anything but I do want to say as a person with chronically presenting FND that treatment is very hard to obtain due to everybody throwing us around. We can read all the resources we want but we do still need clinical help for a range of things that can present with FND in addition to the phsyciatry

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My reason for this post is to spread a patient perspective with genuine curiosity and also advocate for our needs since FND can present with so many different symptoms that may not nessicarily sensory or motor alone but having dysautonomia concerns or other functional problems such as these.

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Please let me know your thoughts!

Edit: I wanted to say thank you for those who also continue to advocate for FND treatment and those that reached out to me for tips on dealing with patients with FND. It means a lot to me that there are people who care about those in complex situations like what FND would put somebody in. Knowledge is slowly growing and hopefully this means soon there will be a wider variety of providers educated enough on the mechanisms to help treat and manage FND in those with multiple triggers or other chronic health situations! Thank you ☺️

Has anybody here ever had a fall while entering a seizure? Or fell because your body chose to sieze while mid stride?

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Tw, experiance/fall described a bit-

I was at my partners house sitting with him while he did some work on his computer. I was following along and taking notes just for myself just entertainment (don't judge I find that stuff fun lol) when I suddenly started to not feel good and feel nauseated. I overdid it yesterday, and used a lot of mental power today so I was sorta expecting to have a seizure at some point soon but was doing my best to hold myself together.

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I went to go walk into the bathroom in case I threw up (been have some better walking days lately so I was capable of that, yay) and I carry a medical bag with me in case I have some sort of episode. I don't remember how I actually fell or landed, I sorta had this weird out of body Experiance where I could almost see myself falling?? It was weird. All I know that I remembered for sure was that I dropped my bag and my head landed on the ground but I didn't really feel it, I just went straight into a seizure

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Like I knew it was coming eventually, but I figured it would have happened on the bathroom floor after throwing up or something, I wasn't expecting it *mid stride and to meet suddenly with the floor* cause that's never happened to me before

Ugh sorry I just gotta get this out for a SEC. I was supposed to have a gj tube placement yesterday but they ran into some complications that made them say they would feel more comfortable with interventional radiology doing the procedure. No big deal, I'd rather not risk anything. Anyway, my partner went with us, he was very loving and supportive through the whole first part of the procedure he was able to be with me for.

His mom however----

Gosh I love her but she doesn't understand. What's crazy is SHES ALSO DISABLED, WHY DOSNT SHE GET IT???

I have gastroparieses, and every organ from my stomach down also doesn't work. I use a Foley catheter and I'll more than likely be having an ostomy placed soon because of severe pelvic organ prolapses and bowel dismotility. But she had the gall to call my mom today looking for tea (which is fine I guess idc) but proceeded to tell my mom while I wasn't around that we we're going about this all wrong and that I don't need a tube placed or any of this, just that I need to drink blended meats and fish specifically. Like huh?????

1. I've been dealing with this for over five years now, it's getting severe and there's many days I can't even hold water down. My fiance spent the night and the morning of the procedure he woke up to me literally vomiting up water from the night before. Like ain't no way my body is gonna tolerate blended foods like that, I can barely tolerate most nutrition shakes. The only food I can keep down without significant discomfort is plain bread. Like GOSH IVE BEEN DEALING WITH THIS FOR YEARS I KNOW WHAT I NEED AND WHAT IM DOING!!!

2. She waited until me and my partner went to church tonight so neither of us were around to call and snoop for tea, like b r u h. And I love my mom, and this is no offense to her but she's not a very good advocate because she doesn't know what she's talking about... She does her best to support me but she just took my future mother in laws bitching and just said "I'll talk to her about the blending foods and see what she says" when she knew DAMN WELL that that doesn't work for me, she just didn't want to rock the boat with my MIL. which okay, I get... But it doesn't help that she doesn't understand the procedure I'm even having done or why IR has to take over so now anything she told my MIL could've been wrong and now I'm gonna have to suffer the consequences of their conversation and have to sit through "you're doing everything wrong you don't need surgery just blended foods"! And I just don't want to put up with that shit.

3. I honestly think this has weird competitive origins. As I said, she's also disabled. She has neurofibromatosis type 2, which is a tumor disorder that causes random tumors to grow on the nerves so she's got like 4 brain tumors, multiple spinal tumors, heart failure and other EDS (Unsure of what type) related problems too like hernias. So I know she gets what it's like, we both have a lot of similar problems despite different diagnosis regarding her NF2 and I have FND but we both have connective tissue problems and lots of similar Neurological symptoms. Like she doesn't have problems with her organs shutting down as of currently other than her heart problems, (which I also have problems with), but I just don't get why she thinks I don't need any of the treatments or medical devices I have/need.. like I genuinely sometimes think it has to do with competition??

She controls my partner and will use her health problems against him to make him prioritize her over me. She's controlling, and there's so much more honestly but it makes me wonder sometimes if she's just jealous that her son needs to make time for me/I have more obvious tools/devices than her so like she's jealous that my conditions are more visible than hers maybe???

But it's so weird, she doesn't want me using my power chair in her house because she's paranoid I'll ruin their floors?? (Shoes off house hold), but that means that Im not allowed over there if I'm unable to walk! Like what tf am I supposed to do???

She's nice to my face and talks shit about me behind my back regarding all my health stuff, I had to tell my mom today that If she calls to just not talk about my health to her. My partner I don't think even knows about this conversation yet, I'm not sure what I should even say to him about it. He knows she's weird and controlling (duh) but it makes me wonder what else she says about it all to him. I can't wait for us to just finally move out together so she can't manipulate him the way she does.

But anyway yeah, according to her I don't actually need these surgeries, I'm going about my treatments all wrong, and "if I can walk around the house why can't she?" is what my future MIL thinks of me🙄

And I know it's none of her business but she always prys, and i know I don't have to say anything to her but how do I keep good terms with somebody like this so she doesn't make it harder on me and my partner? And sometimes Im okay to talk about these things with her too because she's the only person that has been through so much of the same stuff I have IRL, she's the only person that understands that magnitude of it all, yet she doesn't at the same time??? I'm convinced it had to do with jealousy and control at this point honestly

Thanks for reading all that if you did, I kinda blew up at my mom about it which I kinda feel bad for since she doesn't really understand, she just wants to be supportive but she can't just go spreading information she doesn't understand either... Especially not to her :/

Edit: thank you for all the replies, it really helps to know that I'm not the crazy one here bc sometimes I wondered lol.

My whole centeral nervous system feels like it was dipped in hot sauce, my lips and mouth and buzzy and tingly, and I have pleurisy that comes and goes so it's kinda hard to breathe, my ears are ringing, like it won't stop 😭 DAE experience this? I can't seem to get the feeling to go away either. Resting helps and so does my heat pad a bit while on my chest or back area, but it doesn't go away. It feels like having the flue without actually having the flue. Body aches, fatigue, and a centeral nervous system that literally HURTS. what can I do to make this better? Neuro didn't have any idea on how to help. She thinks my inflammation makes it worse

(Used a spoiler tag just in case)

Hi, I'm a white 23F, weigh 240lbs, I'm 5'6, and I have a (long) complex medical history. Medications are duloxitine DR capsul 60mg once daily, Gabapentin 300mg twice daily, precautionary bactrim antibiotic half tab once daily, buspirone 7.5 mg once daily. i have some smoking history in highschool using nicotine vapes and various forms of THC. Im from Florida.

Due to the complexity of my situation, I am an ambulatory wheelchair user. I was diagnosed with Functional Neurological disorder years ago at age 19 due to tics. As time went on I began to experience  spasms, myoclonus, weakness and altered/wobbly gait, episodic paralysis, occasional dysfunctional breathing, reversible stroke like episodes, episodes of vertigo, non-epileptic seizures, and atypical cataplexy not triggered by emotional responses (whole body looses muscle tone and I can't even sit up or move my head, whole body just goes flaccid and it gets hard to breathe). I do not doubt the FND diagnosis, but it's not the full picture yet.

I have chronic eczema on my knuckles beginning when I was 14, a mild latex allergy, and as of lately weird responses to ensure and pediasure drinks. I'm assuming I may have a new allergy or reaction to an ingredient since I do not have mcas or it's other symptoms. Ensure and pediasure drinks cause nausea, tachycardia, low blood pressure, breathlessness, and a tingly feeling down the back of my neck around my cervical spine every time consistantly I am unsure what this reaction is, but figured it could be important.

I also have Ehlers Danlos syndrome, diagnosed at age 21 presenting with hyper flexability, sublexations body wide, skin and soft tissue fragility, severe pelvic organ prolapse (rectocele , cyctocele, and uterine prolapse with mobile uterus), POTS syndrome, occasional bradycardia, and autonomic fluctuations in blood pressure (hypertensive AND hypotensive episodes, sometimes occuring in sudden crisis levels requiring transport). I also have hiatal hernia and moderate to severe gastroparieses requiring j tube placement, neurogenic bladder requiring Foley catheter, and slow/paralyzed bowels requiring manual bowel evacuation. I still have control over my pelvic floor muscles assuming my FND allows it.

The symptoms however that I'm unsure of that make me question whether there is a potential rare autoimmune component or if some of my organ function problems are due to something else are as said below:

⚠️I experiance what I can only describe as feeling like I have the flu without actually having the flu. It causes pleurisy/lung lining inflammation, occasional pleural effusion (not bad enough for hospitalization), tinnitus and high pitched ringing in the ears, a sore feeling all over my body, and what feels like a charged wire lined straight down the front of me. I can only assume this to be my nerves. Sometimes it can be so bad it feels like my entire centeral nervous system was lit on fire, it's a burning tingling feeling that comes with moderate to severe malaise and a mild to moderate headache with a tightness over the bridge of my nose and face. I also episodically have facial flushing with these symptoms mildly. OTC Anti inflammatories don't help for long (if at all), but my heating pad on my chest or back helps the pleurisy inflammation, I usually rotate it between sides for ultimate optimization. I can sometimes still function as long as these weird centeral nervous system symptoms are mild, however any more than a 3/10 pain I will loose basic human functionality to rapidly progressing symptoms. Severe episides may trigger my other health problems such as a seizure, an autonomic episode, or both. These episodes of intense 5/10 pain or higher are agonizing and quickly progress to 9/10 pain where I'm considering transport. They are currently less common than they used to be, however I experiance more mild inflammatory episodes (functional at a 3 or 4/10) like these that last for days with pleurisy and flue like bodily ache, and a nervous system that feels "off" somehow, like my whole nervous system was dipped in hot sauce. ⚠️

I apologize, I cannot remember all the blood tests names, however I had high inflamaory markers, but it did not appear to be Lupus related at all. Brain MRI was also clear according to imaging. My heart does have electrical signal problems (nonspecific intraventricular conduction delay). I also sometimes experience occasional mild hypoxia (90-96) or air hunger with normal oxygen, though I wondered if this could be due to dysfunctional breathing. I also occasionally experience buzzing sensations in and around my mouth and lips but I assumed this could be FND. as of lately, I am also very thirsty all the time, no matter how much I drink

I was suspecting initially centeral pain syndrome, however that doesn't explain the inflammatory responses. My best guesses are CNS vasculitis but I want to research more before I go back to neurology. Due to my FND diagnosis they don't take this distressing mystery inflamaory problem seriously so I'm looking for other ideas other people may have. I am also very frequently told that I am "too complex for our care" at many offices so it's been difficult to find anybody willing to evaluate it

Any thoughts, connected dots, or suggestions to research or look into would be much appreciated, thank you for reading this far

⚠️I did have a death/near death experiance due to prolonged seizure. We do not know the exact cause as this was my very first seizure in January of 2025 at 22 years old. Darkness closed in, light above me and turned into a "dream" of seeing Heavens gates. My soul felt like it was slammed back into my body and it was agonizing. It felt like I was being electrocuted and I was literally trying to just finally pass on because it was so physically horrible. It was traumatizing and I remained unconscious for a number of hours and woke up in the emergency room. They found no damage in my brain except in my heart- that's when they discovered the nonspecific conduction delay so I was discharged. I do personally believe I was status epileptus however no medical evidence of it was actually recovered other than the conduction delay. Could this have triggered the inflammatory responses or caused CNS damage? I did not have non-epileptic seizures or sudden hypertensive crisis episode s, or this strange inflammatory problem until *after* this massive episode last year.⚠️

My fiance and I just got engaged, and while we're taking the engagement slow cause we wanna focus on housing, both of us are beginning to throw around wedding ideas! I posted another version of this in r/wheelchairs for more ideas there too, but I really wanted this here too since pretty much all of us are familiar with the flaring problems that come with having EDS and dysautonomia and the risks we run when overworking ourselves, so I figured I would get a little more specific advice here for energy conservation and similar experiences 💖

The rambling begins:

I am ambulatory, but barley. I can maybe stand for a minute or so, but that's usually about it. I can't actually walk most of the time. It's kinda hard planning and coming up with ideas when I have such specific needs, for example I use a power chair, need low sensory input, and low stress input to avoid any kind of medical episode. And I guess this part I just need some help processing--

I don't know, I guess I just wish I could have a "normal" wedding instead of having to use a wheelchair and other medical devices that I'll have to accommodate too. It just feels so disappointing and embarrassing to me for some reason. I hate that I have to alter my perfect day that I've dreamed of forever to be suited to a bunch of needs I wish I didn't have. It just makes me feel like I'm going to be lesser of a bride with all the accomadations we'll have to make.. like it won't really feel like my/our special day because of my abilities and need for a power chair and my tubes. (Foley catheter and soon a feeding tube. possibly an ostomy as well in the future)

I guess ultimately, if you have any ideas on how to make my chair look better or things I can do with or to it to make me feel better about it as the bride that would be amazing. I plan on upgrading my current folding power chair to one that has a power lift in it so we can still get pictures at eye level (I was planning on doing this anyway lol. It's time for a good upgrade). Any decorations ideas specifically for powerchairs would be awesome! I feel like pinterest hasn't struck any ideas into me yet lol.

And other subjects that I wouldn't mind ideas or feedback for would be good nature related settings that are still accessible? I was thinking about doing wedding photos maybe at like a butterfly garden or something! I'd like to do some engagement photos too here pretty soon as well, so if you have any chair decorating ideas for those ugly folding power chairs (that's what Im using currently unfortunately lol) that'd be great too.

I think for max accessibility we'll probably have the ceremony and reception in the same location, so like a community center or church perhaps, church would probably be cheaper, but I'm sad cause I kinda also wanted a beach wedding or riverside wedding but accessibility is the main issue there.

Also, dress and veil ideas! I always loved big poofy ball gowns and I know that's more doable with a power chair as long as it's not long enough to be in the wheels, but what about a veil? I really want to wear a tiara AND a veil, but I don't know how to do that where you can still see the veil because of the back and headrest lol.

Or since I have tubes attached to me, (urinary catheter and soon a feeding tube) how to carry those with me without being in the way or bringing attention to it??? I can probably have my dress altered or do a two piece to access my feeding tube, but then I have to have a bulky backpack or bag on the side of my chair for my drain bag and my feeds 😭 , how would you conceal this? Or should I just have a matching bag lol... Like I could probably totally sew a matching tote bag, which would be cute I guess... I could probably find a tube extension for my Foley so I can have it not interfere with the dress or my legs any... I don't like leg bags because they leave marks on my skin and they're really uncomfortable lol so I use a large drain bag.

Good golly so many things to think about lol

But anyway, tell my any ideas you've seen before or have done in your own wedding as the bride to make yourself feel better and feel pretty and less like a medical mess on your special day 🥹, I know we're taking the planning slow but I really just want to have a "perfect" in mind so when we actually start taking initiatives to plan and get everything ready we have a good basis to start from

My final thought is what are some good ways to pace the planning to avoid overwhelming myself and causing myself to flare or feel like crap on my wedding day? I've always valued my independence and ability to help others but I'm worried that the execution process (such as getting ready, loading the car, decorating, preparing food, setting up tables and backdrops etc) will be too much on my body, and I know I wouldn't be functional for the actual wedding if I helped put everything together on the day of, so it's kinda a win loose because I don't wanna just leave it all to my family, plus I don't really trust their eye for me and my partners preferences lol.. but any thought on this would also be incredibly helpful 💖

Thank you for listening to my rambling! Lol I'm very nervous and excited to be a wife 💖

My fiance and I just got engaged, and while we're taking the engagement slow cause we wanna focus on housing, both of us are beginning to throw around wedding ideas!

The rambling begins:

I am ambulatory, but barley. I can maybe stand for a minute or so, but that's usually about it. I can't actually walk most of the time. It's kinda hard planning and coming up with ideas when I have such specific needs, for example I use a power chair, need low sensory input, and low stress input to avoid any kind of medical episode. And I guess this part I just need some help processing

I don't know, I guess I just wish I could have a "normal" wedding instead of having to use a wheelchair. It just feels so disappointing and embarrassing to me for some reason. I hate that I have to alter my perfect day that I've dreamed of forever to be suited to a bunch of needs I wish I didn't have. It just makes me feel like I'm going to be lesser of a bride with all the accomadations we'll have to make.. like it won't really feel like my/our special day because of my abilities and need for a power chair.

I guess ultimately, if you have any ideas on how to make my chair look better or things I can do with or to it to make me feel better about it as the bride that would be amazing. I plan on upgrading my current folding power chair to one that has a power lift in it so we can still get pictures at eye level (I was planning on doing this anyway lol. It's time for a good upgrade). Any decorations ideas specifically for powerchairs would be awesome! I feel like pinterest hasn't struck any ideas into me yet lol.

And other subjects that I wouldn't mind ideas or feedback for would be good nature related settings that are still accessible? I was thinking about doing wedding photos maybe at like a butterfly garden or something! I'd like to do some engagement photos too here pretty soon as well, so if you have any chair decorating ideas for those ugly folding power chairs (that's what Im using currently unfortunately lol) that'd be great too.

I think for max accessibility we'll probably have the ceremony and reception in the same location, so like a community center or church perhaps, church would probably be cheaper, but I'm sad cause I kinda also wanted a beach wedding or riverside wedding but accessibility is the main issue there.

Also, dress and veil ideas! I always loved big poofy ball gowns and I know that's more doable with a power chair as long as it's not long enough to be in the wheels, but what about a veil? I really want to wear a tiara AND a veil, but I don't know how to do that where you can still see the veil because of the back and headrest lol.

Or since I have tubes attached to me, (urinary catheter and soon a feeding tube) how to carry those with me without being in the way??? I can probably have my dress altered or do a two piece to access my feeding tube, but then I have to have a bulky backpack or bag on the side of my chair for my drain bag and my feeds 😭 , how would you conceal this? Or should I just have a matching bag lol

Good golly so many things to think about lol

But anyway, tell my any ideas you've seen before or have done in your own wedding as the bride to make yourself feel better and feel pretty and less like a medical mess on your special day 🥹, I know we're taking the planning slow but I really just want to have a "perfect" in mind so when we actually start taking initiatives to plan and get everything ready we have a good basis to start from

Okay, not sure if this is an approximate post for the sub, so I do apologize mods if it's not, BUT-

I have pretty severe pelvic organ prolapse, stage 2 and stage 3 for rectocele and cystocele that gets worse with bearing down, additionally my uterus slips out of place and partially falls out of my vaginal entranc-*every single bowel movement*.

My PCP thinks I need an ostomy of some sort and my gastroenterologist thinks that somehow biofeedback therapy will fix all this... Which I'm not at all convinced cause my organs are literally falling out of me and I have to shove them back in there. It's quite painful, and makes all my organs and intestines spasm out.

I have Ehlers Danlos so my connective tissue and soft tissues SUCK, and I have FND so my brain doesn't communicate well with the rest of my body, but it's very spotty sometimes. I can still move my pelvic floor but since, my stuff is so oddly complex I'm not sure how to explain to my gastrologist that biofeedback isnt going to fix my organ prolapse and that I more than likely need an ostomy -

But that's where my question comes in:

How many of you have gotten an ostomy due to severe pelvic organ prolapse(s)?

I've heard of it being done, but this gastro is soooo defensive if I raise any concerns. Took him YEARS before he would allow a feeding tube placement consultation (in a few weeks 🤞) due to my gastroparieses, and I'm worried he's gonna go the same thing with an ostomy

Cant really swap gastros currently since my tube placement is at the end of this month, but I figured if I present him with crowd scourced experiances that maybe he would take it more seriously

My biggest questions though:

How many of you have an ostomy due specifically to pelvic organ prolapse/Ehlers Danlos?

And how can I mentally prepare for this conversation? What are your stories and experiences?

(Also posting in Ostomy sub)

Okay, not sure if this is an approximate post for the sub, so I do apologize mods if it's not, BUT-

I have pretty severe pelvic organ prolapse, stage 2 and stage 3 for rectocele and cystocele that gets worse with bearing down, additionally my uterus slips out of place and partially falls out of my vaginal entranc-*every single bowel movement*.

My PCP thinks I need an ostomy of some sort and my gastroenterologist thinks that somehow biofeedback therapy will fix all this... Which I'm not at all convinced cause my organs are literally falling out of me and I have to shove them back in there. It's quite painful, and makes all my organs and intestines spasm out.

I have Ehlers Danlos so my connective tissue and soft tissues SUCK. I also have FND so my brain doesn't communicate well with the rest of my body, but it's very spotty sometimes. I can still move my pelvic floor but since, my stuff is so oddly complex I'm not sure how to explain to my gastrologist that biofeedback isnt going to fix my organ prolapse and that I more than likely need an ostomy -

But that's where my question comes in:

How many of you have gotten an ostomy due to severe pelvic organ prolapse(s)?

I've heard of it being done, but this gastro is soooo defensive if I raise any concerns. Took him YEARS before he would allow a feeding tube placement consultation (in a few weeks 🤞) due to my gastroparieses, and I'm worried he's gonna go the same thing with an ostomy

Cant really swap gastros currently since my tube placement is at the end of this month, but I figured if I present him with crowd scourced experiances that maybe he would take it more seriously

My biggest questions though:

How many of you have an ostomy due to pelvic organ prolapse/Ehlers Danlos?

And how can I mentally prepare for this conversation? What are your stories and experiences?

(Also posting in EDS sub)

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