Saw a recent post and wanted to ask something similar!
Is there a list of anything that you want to see more in characters with a G or J tube? Are there any tropes/stereotypes that i need to be wary of? Thanks!
Characters I’m thinking of:
- character who loses top 2/3 of stomach from a traumatic incident- has pylorus still and is able to eat a little by mouth but isn’t able to eat enough by mouth to sustain because remains of stomach is small- dependent on J tube
- autistic character who got a G tube as a child for various reasons including ARFID, and still has it and depends on it as an adult
Hello!
I'd like to see:
Any character that has a j-tube, since I'm not familiar with literally any. I don't know if there are any stereotypes, as I don't think enough people are aware of this (or the jejunum being a body part they have in general).
Characters that have a specified reason why they have the feeding tube (even if it's just "they can't absorb enough nutrients" or "they cannot safely swallow") rather than just being Unable To Eat.
Some causes could include: gastroparesis (stomach paralysis), Crohn's, gastrointestinal and head-and-neck cancers/physical trauma, ulcerative colitis, dysphagia, eating disorders, intestinal failure... For temporary reasons, it could be as simple as "surgery".
Characters who have a feeding tube because of cerebral palsy. The lowest estimate of how many people with CP use one that I found was ~6%, which is not that low to be honest, but I can't say I've ever seen it represented. Though it's also limited by the fact that characters with cerebral palsy that severe aren't represented as a whole.
This isn't really a stereotype since the opposite is accurate for many people, but I'd like to see characters with feeding tubes that visibly improve after getting it. For example, a character that was malnourished regaining their energy after getting a tube placed.
Characters shown caring for their feeding tube by themselves.
Characters that have literally any other "aesthetic" than "hospital". A character that does spend a lot of time in a hospital/medical setting is not necessarily a Hospital Character as long as they have literally anything else going on. But if in every depiction they're just standing there with that IV drip on an infusion stand in that hospital gown...
Depending on the condition, some people with a feeding tube can still eat by mouth. They might just not be able to eat enough or to absorb it correctly.
Characters who can't eat by mouth, at all, and maybe do miss food but don't make it their entire personality.
A variety of characters with feeding tubes! Some that have always used it, ones that are new to it, ones that use it permanently/very long-term, ones that use it because of a temporary illness or surgery, etc.!
Hi there, do you happen to know of any books with representation of gastrointestinal disorders? Specifically I’m looking for characters with colostomy bags or feeding tubes which I know are kind of two different things but I’m searching for both for different reasons and haven’t had much luck with either :/
I have the Gastrointestinal Disorders tag, however I don't have any books currently on the archive that feature/are about colostomy bags and feeding tubes. So I've gone away and done a bit of my own research, and hopefully these are more in line with what you're looking for.
As always, if there are any books on the list you would like more information on but cannot/are struggling to find it yourself, I'm more than happy to try my hand at it for you.
This is a link to the "books" section on the Ostomy/Connection website. This is a website created by people with various types of ostomies, for people with various types of ostomies. Or "ostomates", as they call them. I believe the books they advertise are all non-fiction and written by people with ostomies. They have a fairly extensive collection.
SH!T BAG is a young adult fiction novel by Xena Knox, based on the author's own experiences with bowel surgeries and living with an ostomy. Here is a link to the "about the book" on the author's website, and here is a link to the Goodreads page.
I've been told that Lani Lynn Vale (a popular romance author) has been known to include disabled characters in her work at times, including a character with a colostomy bag. I haven't found the exact book yet, if this is indeed true, but I have linked her website.
Bar some guides, all of the books I found that feature characters with feeding tubes where heavily geared towards young children and parents, mostly from the site My Tubey. The result that popped up the most was the children's picture book "The abilities in me: Tube Feeding", which I have linked here. I'm not sure how much these books would be of interest to you, but I'm happy to provide a full list if you would like!
Of course, I'll be on the lookout for more, but I hope that these can suffice for now.
Please let me know if there's anything else you need!
In honor of disability pride month I want to share my love.
I love you full time wheelchair users. I love you ambulatory/part time wheelchair users. I love you forearm-braced crutches users. I love you armpit-braced crutches users. I love you walker users. I love you cane users. I love you back-walker users. I love you AAC users. I love you brace users. I love you compression sock users. I love you heart monitor users. I love you feeding tube users. I love you ileostomy bag users. I love you colostomy bag users. I love you hearing aid users. I love you guide dog users. I love you medical alert dog users.
I love you people with spinal implants. I love you people with limb prosthetics. I love you people with eye prosthetics. I love you people with voice synthesizers.
I love you disabled people with ill-fitting aids, whether it’s because they’re too expensive or simply not accessible. I love you disabled people that took a long time to accept their disability. I love you disabled people who hate your disability. I love you disabled people whose family ostracizes you. I love you disabled people who live in an entirely inaccessible town/city.
I love you disabled people who struggle to find community. I love you disabled people living active war sites. I love you disabled people who get treated like less than because you can’t understand some things. I love you disabled people who get walked over and cant say or do anything about it. I love you disabled people who have to fight their own community to be heard, to be seen.
I love you trans disabled people. I love you poc disabled people. I love you sexually queer disabled people. I love you intersex disabled people. I love you indigenous disabled people.
You are all worthy and deserving of love and respect. No matter how much the world denies it, you are people too. Lovable, 3 dimensional, people.
"What if...?" Cards become immobile blob and her girlfriend had to take care of her
((I assume you mean Catra))
“BRRRRAAAAAAAAAAAAAAAAAAP!”
Another belch echoed through the halls of Bright Moon and the blob who made it wobbled and shook. She resided in the former throne room since she wouldn’t fit anywhere else. Catra sat comfortably on her titanic add with her chubby face sunken into her fat with a hood of back fat hovering behind her. She long since lost any shame in anyone walking in on her naked body. In fact, she was amused by their reactions and would break wind to mess with them. Her mouth was stuffed with three feeding hoses providing her with a stream of pastries, juices, meat, and nutrient paste. One of the tubes fell out of her mouth and Catra shouted, “Adora!”
Her stomach rumbled and one of her fat rolls parted revealing a blonde warrior with tremendous strength holding it up. “Yeah, Catra?”
“A tube fell out.”
“On it!” Adora stepped out of the crease and began climbing up the cat. She was unphased by Catra farting up another storm or the fact that her girlfriend was bigger than a parade float. If anything, that turned her on. It’s why she was willing to devote her time to being her caretaker. Adora hopped onto a breast as big as her and pulled herself up to reach Catra’s chins and grab the hose. She carried it up to Catra and slipped it in her mouth. “Better?”
“Yah,” Catra muttered.
“And what do we say?”
“BRAAAAAAP!”
“Try again.”
The grumpy glutton muttered something under her breath. “Thank you.”
“You’re welcome.” Adora crouched down and gave the blob a kiss. Seeing Catra blush was worth the climb.
Novy's Guide To Feeding Tubes For Fun And Funky 20somethings
This guide's usefulness is not limited by age (you can be a teen, or in your 50s! anything works) but it does assume you, the reader, are getting a feeding tube yourself. This is much less aimed at parents with young children, or adult children of elders. There's lots of other guides aimed specifically at these groups out there.
I am not a doctor, or even in medical school. I'm a chronically ill public health student. This is not medical advice, it's basic information and life hacks. If you're unsure about anything please ask your doctor, and remember I'm just a person on the internet who doesn't know your particular situation.
Basics: There are several types of feeding tubes: nasal tubes vs surgical tubes, and gastric tubes, duodenal or jejunal tubes. The first aspect refers to how the tube enters your body, and the second to where it goes to. People refer to them with acronyms, so an NG tube is a nasogastric tube (goes through your nose to your stomach) and a PEJ or J-tube is a percutaneous endoscopy jejunostomy, a hole through your abdomen into your jejunum. I have a PEG (hole in abdomen into stomach). There are also JG-tubes, where you have a hole into your stomach but there's a long tube threaded into your jejunum from your stomach. Surgical tubes are usually long-term, and nasal tubes are often short term. People often have a nasal tube to trial tube feeds before going through surgery.
Some people have a gastric tube they don't use for feeds, but for draining out stomach contents. This can be really helpful for some people!
You've probably heard the word "tubie" if you know anything about feeding tubes, it just means someone who has one.
I do not really remember my surgery because I had a bad antibiotic reaction and Experienced A Sense Of Impending Doom. Mostly, I can say -- I know it's scary, and you may have a lot of complicated feelings. It's okay. Eating is held up as some sort of fundamental human experience, and it's absolutely not, but it's okay to grieve. It's okay to wonder what will change, or worry about how you'll look now.
However in my personal opinion, you are going to become a cyborg and that's badass. The cyberpunk future is here and it's disabled people. 🤖♿
It will probably hurt for a bit after the surgery; I found ice was really helpful. I would sleep with a body pillow and an ice pack tucked between the pillow and my body.
You'll want to tape the dangly end to your stomach, otherwise it'll get yanked. You'll have adhesive on your stomach all the time, so you want to find a tape that doesn't irritate your skin. I use a soft blue medical tape from the grocery store. Some people really like Grip-loc but I haven't tried it.
After your stoma heals, you might be able to request to replace your dangler tube (long, you need to tape it up) with a button (much smaller, no need for tape.) You need to replace tubes regularly so it's not an extra procedure, it's just a QOL improvement for a lot of people! However surgical tubes (almost?) always have a dangler placed first
A demonstration of the difference (from the ALS society, this link may be helpful for everyone not just people with ALS)
[ID: comparison of a standard feeding tube, which has a bumper at the stomach and a long tube dangling away from the body, and a low-profile feeding tube button, which sits flat against the stomach.]
There are two (? I think) types of pumps, Kangaroo Joey and Moog Enteralite Infinity. Kangaroo Joey is a lot heavier. If you have the choice and you're planning to do anything but sleeping while hooked up, I'd ask for Moog. If it doesn't work for you you can try the Joey!
If you are prescribed feeds throughout the day you can get a backpack to carry them through insurance, but they are usually ugly! There are backpacks out there to buy (try Etsy) or if you can sew, tutorials for modifying an existing backpack for your tube.
Also, free arms exist , but I've never used one. They're really expensive! I've heard good things, though.
If you go with an IV pole you can decorate it and that's always nice! Mine I covered with washi tape and silver star tinsel.
Lots of people get granulation tissue around their stoma. I get a lot of, uh, crusty stoma gunk? I clean my stoma regularly (qtip and warm water) because otherwise my skin gets acid-burns and irritated. Tubie pads are really helpful for some people. I like ones with fluffy backs. There are lots of people who make them, try different types until you find one you like. You can also use gauze.
There are 2 ways to connect your tube-in-you to your feeding pump; ENfit and classic. I used classic for a while and did not like it. I'd often come unhooked and not notice. I'd wake up in a pool of formula or look down and see my shirt was covered in stomach contents. :/!
ENfit screws in and it's much nicer for me. Personal preference, but ENfit is my favorite (and it's meant to reduce medical error.)
You WILL probably get formula everywhere, sometimes in public and sometimes in the middle of the night. It.. sucks. Keep clean sheets nearby.
Formula is hard to get out of fabric and I have minimal energy so I just take things in the shower with me and scrub them there before running them through the washer (Honestly I do this with incontinence and period messes too. It's strangely helpful)
Sometimes tubes get clogged, to prevent this you need to flush with water often. Flushing also helps keep them from smelling bad, and in buttons keeps formula from solidifying and gunking up your anti-reflux valve. People say you can unclog tubes by flushing with coca-cola, but I've heard that that can increase risk of later clogs. Talk to your doctor about what to do.
There's a strange thing that happens when I'm hungry; my tube gets kind of sucked deeper into my stomach? Some sort of suction, I don't know how to describe it. It feels weird, but nothing's wrong with your tube! You just need something in your stomach, I've found. Water works.
If your stoma has been feeling fine for a while and then suddenly starts bleeding and hurting, you may need a tube change. My gastroenterologist said nothing was wrong, that they just hurt sometimes and I had to just deal with it, and then my tube fell out and had really sharp calcifications all over it, which hurt! The new tube did not hurt at all.
If your tube falls out it's not an emergency but it's urgent. Stomas close really fast. If you can't replace it yourself you need to go to the ER. They can replace it there. I tape gauze over the stoma to keep it from leaking stomach contents while I wait for it to be replaced.
If you feel like something is wrong it probably is. I kept waking up in the night to vomit formula and said I wanted to change formulas, and the gastroenterologist insisted This Formula Is Best. Eventually I convinced him to try a different one and I have much less night vomiting. I use Fibersource. Some people blend their own. I've also heard lots of good things about Kate Farms. It really depends on your personal needs.
If you have POTS and aren't doing feeds round the clock, you can do fluids through your tube! It keeps me from needing IVs so often. I use water and liquid IV and powdered magnesium and run my tube, and it really helps (It's easier than remembering to drink.)
You can do meds through your tube. Try and get as many in liquid form as possible, and the other ones you can use a pill crusher and dissolve in water. I have trouble swallowing pills so this has been really helpful!
You can get different size syringes to do this.
I wish you so much luck and joy with your tube! Mine truly changed my life and I am so grateful for it. It can be hard, and awful, and disgusting, but nutrition is so worth it.
If you have any other questions, please feel free to DM me or send me an ask.
