u/carr10n__

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I wasn't to scared to get my illeostomy until everyone kept beating the fact that it's permanent into my head.

My stomach and colon are both partially paralyzed, I have a redundant sigmoid colon and I take opioid pain medication, my bowel movements are like 1-3 weeks apart(airing on the longer side), I'm miserable, it's horribly painful and nauseating, it's also medication resistant for the most part(I have to take an entire colon prep or double to get a "normal bowel movement". Given that I've been pretty excited cus I feel like it'll help alot, the full procedure that me and my surgeon have agreed on is an illeostomy(not sure which type) with a total colectomy and I think an abdominoperenial resection.

I've been through like 6-7 surgeries this year and even more sedated procedures so my mom wanted me to wait a few months before my next one, also so that she can get more pro and take care of me in the hospital. The longer I go before getting it the more people keep telling me it's permanent or it's annoying or not worth it at my age(21) and I'm starting to get more nervous about it, I know the care process for the most part but I'm still getting nervous from people telling me to be.

I'm not completely sure what I'm asking but I guess I'd just like any information on life after the procedure

Ive been looking through and like half of illeostomys seem to get reversed but mines gonna be permanent so Im really not sure what to expect

Edit: Ty all fr the nice sentiments and helping me feel better, I'm also realising I really fucking need this and I'm not gonna miss life before it

TW DIARRHEA AND POOP

I took two colon preps yesterday and couldn't move a muscle from nausea, woke up at 6am having diarrhead the bed through my diaper(ik that's a risk with the bag but I assume way less painful) still to nauseous to sit up, had my caretaker replaced my sheets while still laying on the bed, my opioid pain medication wouldn't even help with the pain and then I woke up painfully shitting my guts out I'm so ready for this, I wish it was within the next few weeks before I have to do this again

My stomach and colon are both paralyzed, the plan is an illeostomy, abdominoperenial resection, and total colectomy.

I am fully hydrated and half fed through my jejunum and I have absolutely no idea how those two I interact or if they bring extra complexities to management.

Edit: I don't have an illio yet, I'm waiting a few months cus I've had 7 surgeries this year

Is there a way for me to go ice skating with my boyfriend and roommate(even if it's just them pushing me around on something), I can like use my legs for transfers but I can't really stand for longer than 2 seconds so I can't like go skating with a rollator unless I were just sitting on it while someone pushed me. My bf who's a part time ambulatory user loves skating and I used to and I want to be able to go on the rink with him without dropping thousands on a hockey sled

I got banned from r/disability for asking for help. I knew that subreddit was very institutionally inclined, I've heard many accounts of them invalidating self diagnoses and saying that you're not allowed to use a mobility aid unless told by a doctor without any prompting.

I asked about neck brace recommendations and got hit with "you need a doctor's prescription/permission". I got upset because no one was answering my question in lieu of telling me I need to see a doctor, I then basically got called hysterical before getting banned from the subreddit.

I've noticed this alot within disabled communities, the blatant disregard when I told them I couldn't see a doctor is indicative of their ignorance/bigotry towards the more severe people who are housebound/bedbound and the people who can't afford to go to the doctor for whatever reason. There's a trend I keep seeing, mostly from white disabled people, where they ignore either part of or the whole of intersectionality which makes them be more aggressive towards non cis white men.

The "you need a doctor" argument in response to someone trying to manage symptoms on their own is a bigoted statement, it ignores those who cannot leave their house, those who can't afford a doctor, those who don't have accessible transportation, those who experience medical racism and/or misogyny, etcetera. Intersectionality is a large part of examining any power structure including the medical industry and disability.

I'm not saying I want to be back in that community, if they kicked me for being annoyed at abelism then I don't want to be there. However I obviously find great issue with the fact that the mods felt that I needed to be banned for asking for getting annoyed at abelism, I read the rules and I had not violated any of them. Disabled people are already cut off from alot of socialization opportunities, some more than others, and perpetuating bigotry and kicking people out because of that bigotry isolates alot of us even more than we already are.

Apologies if this isn't well written, brain fog + upset :p

Sometimes mine won't stay in place for like days, usually I use KT tape to give some hold to it but it's not the best. I can't use braces cus any compression of my chest or abdomen makes it rlly hard to breathe. So how do y'all deal with it?

I've seen the infinity pump covers but I have a kangaroo and I'm getting sick of it looking so bleh so any ideas welcome

I have severe hEDS, my fingers hyper extend, I have splints but it still hurts.

I have a Kangaroo Omni pump, the buttons take too much strength especially when I hold them down to do a manual flush(I have feed and flush bags) does anyone know of any adaptive equipment I can get to make the buttons easier to use

Edit: I need something that can stay attached to my pump, and the type of buttons is really important to this question, please look up a kangaroo Omni pump before answering this question

Pretty much the title, I'm mostly housebound, I go out for appointments and about once every 1-2 months I can go grocery shopping. I don't have an income and am supported by my parents but I'm also trying to support my boyfriend off of what my parents give me(He's also disabled and just got fired). I'm working on getting disability but I'd like to find another source of income that I'd be able to do mostly if not entirely from bed. Any suggestions?

I have a g tube for drainage and a j tube for feeds. My hospital general surgery team has told me that they don't think they place buttons there and my home health nurse doesn't know of anywhere that places buttons in adults. I've been told that I'm going to have to see if any PEDS will place a button for me as an adult. For those of you who got your buttons placed as adults, what type of surgeon did you get to place it. I'm located in Chicago and I'm willing to drive up to 1.5 hrs to get one placed if there are specific surgeon suggested

I have a g tube for drainage and a j tube for feeding. I've had a tube since march 1st and I'm on 24 hrs feeds. I have tried to go to nightly feeds but that didn't work for me due to hunger during the day.

So I'm an ambulatory wheelchair user on 24 hrs feeds, I've been using my wheelchair less because I find the tube and having to deal with it kind of obtrusive. Which means I'm walking around more and causing more pain. I'd like to use my wheelchair more, I have a tube backpack but leaving that on my wheelchair puts the pump out of reach when I'm in bed. My next thought is getting a IV pole for my chair but then I have the same problem of the pump being out of reach while laying in bed. Any tips on navigating 24 hour feeds as a wheelchair user?

I have hEDS, my shoulders are my worst joint. I've started using a power chair for longer outings, and I'm looking into getting a power assist because it's finally been long enough to ask insurance.

However I would like to be able to use my manual more often especially because my apartment interior is not really accessible to my power chair.

KT tape does help but it does not stay on well, I cannot wear braces BC of abdominal sensitivity to compression.

I dream of being able to use my manual consistently but my shoulders do not agree, any tips on easing the pressure on my hyper mobile shoulders is appreciated.

Edit: especially with winter in Chicago coming up, I have a freewheel and snow tires and would like to be able to go out in the snow

Im sevearly disabled and looking for routes to earning some money to support myself, scrapping insulated wires fr copper looks like smth id be able to de but i dont know where to source enough insulated wires to do so.

Where could i get enough wires to get started, i cant do a bunch of manual labor to aquire them so getting large buckets of cut wires would be ideal

Im sevearly disabled and looking for routes to earning some money to support myself, scrapping insulated wires fr copper looks like smth id be able to de but i dont know where to source enough insulated wires to do so.

Where could i get enough wires to get started, i cant do a bunch of manual labor to aquire them so getting large buckets of cut wires would be ideal