#Crohns Disease

[genderqueerdykes]

i just think it's bullshit that alternative meats, milks, eggs, breads, and other foods are prohibitively expensive. like i don't know how to tell people that not everyone who eats vegan or vegetarian is choosing to eat that way because of their moral beliefs- a lot of people are eating these foods because they have food allergies or intolerances, or have other gastrointestinal issues

i don't have a choice. it's downright cruel to make these different options more expensive. there is no one size fits all diet- every single person needs a unique diet and some folks literally have no choice but to utilize these substitutes. some vegetarians cant digest soy. some vegetarians can't eat beans. i also don't know how to tell you that not every vegetarian or vegan can ingest raw vegetables and fruits, or even cooked ones, for that matter

there are a LOT of health conditions like irritable bowel syndrome, gastroparesis, crohns disease, and other gastrointestinal issues that can cause a person to become very sick or even die if they ingest too much raw plant matter, especially vegetables high in fiber. when these fibers cannot be broken down by a person's digestive system, they can form blockages in the intestines and kill people. not every person on this planet benefits from eating a lot of leafy greans. some people are allergic to chlorophyll. some people are allergic to citric acid. diabetic people have to be careful with certain vegetables and fruits causing spikes or dips in blood sugar, and many people with diabetes end up with gastroparesis, or similar gut issues. there are a lot of reasons why people can't just switch to a diet of salads and fruit smoothies every day.

alternative foods need to be available to everyone, regardless of how much income they make. having safer alternative foods should not be relegated to the rich. these are not just being consumed by spiritual white moms on instagram. these foods need to be accessed by disabled people all over the world.

[delta-hexagon]

Chronically Ill Hexagon asking for help

im desperate

on July 4th i returned home from a small family vacation and caught something on the plane that triggered a bad crohns disease flare. i went to the ER twice in excruciating pain and each time they sent me home telling me it was just a stomach bug

on July 17 i finally got my remicade infusion 2 weeks late, and on July 19 i had a gastroscopy. on July 24 i had a CT scan

i still havent heard about the results from either, and my specialist hasnt returned any of my calls asking for a letter so i can go on medical leave

my workplace similarly has NOT responded to my request for a Record of Employment, which keeps me from going on EI

i have not been able to work since July 4th and have had zero money coming in because i cant apply for EI without any of the paperwork ive been asking repeatedly for. after barely managing to pay rent, im solidly at -5 dollars

this entire ordeal has been awful. i feel like im being failed at every opportunity by medical professionals and my workplace and i dont know what to do. i can barely eat, drink, or walk without pain, and while im slowly recovering, i still dont know when i'll be able to return to work

so im asking here for help. for anything to help get me food i can actually keep down while i recover

[crippledpunks]

if you try to police disabled peoples' diets INCLUDING how they spend their money on food: i just want to ask why? what do you gain from this? like seriously, what do you actually gain from displaying holier-than-thou behavior toward another person's spending and dietary habits? who cares if you would spend your money "better"? you're not them. this is a form of abuse. you literally have no idea what the disabled person can safely digest and actually gains nutrients and energy from. you have no clue, even if you share the same disorder, you are not that person, nor are you their gastroenterologist or other specialist.

telling disabled people to "eat healthier," "eat more salads," "eat more fresh fruits," "eat more fresh vegetables," "eat more grains," and so on can not only be outwardly dangerous for people who have digestive issues like inflammatory bowel diseases, gastroparesis, irritable bowel disease, acid reflux, a history of ulcers, gastritis, and a long list of other digestive health issues, it can outright kill someone if they form a blockage. this can also injure, sicken or kill diabetics, people with non-diabetic low or high blood sugar, blood pressure issues, kidney and liver issues, and many other people.

not only that but you're potentially forcing a neurodivergent person to eat foods that nauseate, sicken, or disgust them, and for what? autistic people know what foods are safe for them to eat. adhd people need to find finds they can manage to keep in their homes without spoiling. dissociative people, people with ADHD, head trauma, develeopmental disorders, other people with memory issues, dementia, alzheimers, psychotic people, and other mental and cognitive health issues need foods they can prepare safely, because many mentally ill and neurodivergent people can't safe;y cook without risk of injury or damage to their home.

people who deal with allergies and intolerances are constantly struggling with being told how to eat when they are the ones who know their experience the most. NOBODY gives a fuck about people with allergies and literally nobody takes food intolerances seriously. i can't digest animal products OR byproducts anymore. i lost the ability. but sometimes i question "maybe i can try it again because this food is cheaper." well. i decided i was spending too much on groceries due to inflation and bought cow's milk instead of almond milk and got so sick it was something i had never seen before. i do NOT need to prioritize "saving money" over eating foods i can safely digest. i had an IBS attack early this morning because i ate some cheese- because it is a "cheap, easy source of protein."

some disabled people need to use certain services like pre-prepared foods being delivered to their homes, be it meals on wheels, or hello fresh. guilting these people for using the services because they could "just cook at home" is insulting to say the least. many of these services have tailored meals with consistent ingredients with limitations on contaminants with allergens.

here's the big one that everyone fucking hates but needs to accept immediately: some disabled people are too exhausted, in pain, dissociated, psychotic, unable to focus, unable to follow instructions, or in other ways unable to cook for themselves and need to use food delivery services like doordash and uber eats.

some disabled people can't or don't want to drive due to their disabilities! blind disabled people exist! para- and quadriplegics exist! people with hand tremors exist! working disabled people exist! amputees exist! disabled parents exist! disabled people who care for partners and family exist!

this one is sooooooo taboo and i'm sick of it. first of all, dashers and uber drivers are every day people who need to earn income. these are people's jobs and their lives are in fact on the line because this is a lot of drivers' primary income. enough with guilting people on this one. i'm fucking sick of it. y'all hate independently employed people and it shows. this isn't a luxury just relegated to rich white moms: disabled people need to have prepared, easy to eat foods delivered to our homes too. y'all need to leave people the fuck alone when it comes to takeout.

the second someone poorer and more disabled than you does something you do regularly, suddenly you're sending articles and giving paragraphs and paragraphs of advice on how to spend money better and how the disabled person "just needs to eat rice, beans, ramen, and frozen vegetables" because disabled people are not allowed comfort NOR convenience in your eyes. this is absolutely asinine. stop it. EATING is not relegated to the privileged

disabled people are people and need to eat. why you are prioritizing money over a literal human need is beyond me this is sick behavior. why do you care so much more about the money than the person ?why is money more important than someone's safety to you? why would anyone rather see someone "spend money the right way" over a human being EATING FOOD and especially foods they KNOW won't make them sick. policing how any disabled person spends their money on food is also unnecessary and abusive. it serves nothing to gain and everything to lose. so what if you think a disabled person spends too much money on food? you do too- we all do: food should be fucking free. get over yourself and let disabled people eat. leave your greed at the door, stop feeling entitled over other peoples' finances and spending habits.

telling a disabled person how to "eat healthier" will not make you healthier, and it will not do them any good, either. all it does is serve to stroke your ego because you believed you ""helped"" someone but all you did was give unsolicited advice that will be forever moot because you do not live in that person's body. don't care if you know them personally: you ain't them. so back off, let disabled people eat. food ain't just for the rich. food ain't just for the abled. let people access food in ways that are safe for us or get the fuck out of our way because all you're doing is causing problems and making disabled people's health problems WORSE.

[agentxpoe]

I love when I’m having Symptoms™️ and I backtrack what I have/haven’t done and I’m like

[lawfullyhopeful]

Me walking 5 blocks this morning: woaw I feel almost no pain :) maybe I really am healing

My legs, at midnight: oh, looks like we're late. Opsies!

[snowpetal-starshard]

Sitting at work, and suddenly the whole mask slipped and my coworker asked what was wrong. I mean, it's a long list but I just settled for “not feeling well, no big deal,” and it is. It is a big deal, but it occurred to me how much energy goes into not feeling disabled on a daily basis. And it's a lot.

[motherofpuppets]

brb getting my inflamed intestine pierced at Claire’s

[lillypadcrochet]

After a busy medical week I’ve updated my big girl beads of courage

(For those who don’t know, kids with medical needs can join the beads of courage program, where they receive a bead for each medical encounter to keep track)

I made my own because god knows this chronic illness journey can be hard, even as an adult.

This week I had an abdominal MRI with glucagon (which made me puke)

Then my brother and his partner had a gender reveal for their baby girl (!!!) and I had to sit and watch everyone eat celebratory pizza bc I had to do clear liquids for colonoscopy prep

Then prep made me puke again, but thank you zofran for saving my ass during part 2- I think I’m gonna have to request that be a set part of my prep plan cuz ugh puking straight liquids is gross and annoying.

My scopes went well, though I woke up wizard high and they had to bring my mom back to hang out with me in recovery because it was taking me too long to sober up 😅

Evidence of gastric and ileal inflammation, so we’ll see where to go from here I guess

I went back to work on Thursday and was immediately told by a student that I looked sick 😂

I still haven’t gotten my mri results back which is frustrating me- I recently had crazy itchiness and some wonky liver number in my labs (though they were trending down) so I want to see what that looks like on imaging.

Anyway!

Next week I have my first rheumatologist appointment and a follow up with my GI! Another busy week 😬 but I’m glad to be making moves and not just waiting waiting waiting.

I love my doctor and I really trust her expertise, even if I know I’m gonna have to switch to a less convenient drug (lifestyle wise)

[wrdlss]

INTRODUCTION POST

Hi, I’m Samantha! They/Them

I’m a 28 year old, non-binary bisexual autistic with Crohn’s disease living in Salt Lake City. I have a partner and am not looking to date anyone else 💕

If you’re a minor DNI

I really enjoy meeting/interacting with cool and interesting people! I’m not, however, very good at checking my inbox 😅

Formerly - [this will be where I put my previous @ when I change this one]

Secondary blog - @floraldeposits

More below the jump:

Some of the things I enjoy/blog about (in no order):

🧄🥩🫚 Cooking & food (I have a lot of dietary restrictions thanks to Crohn’s, but the biggest ones are that I can’t eat dairy or wheat and I severely limit my fiber consumption)

🛸⚔️ Speculative fiction (fantasy, sci-fi, etc.)

🎲 TTRPG (D&D, WH40K, homebrew, etc.)

📺 Anime/manga (Vinland Saga, Full Metal Alchemist Brotherhood, Hellsing, Claymore, Delicious in Dungeon, etc.)

🌾🌊Politics (I’m a disabled queer, existing is inherently political for me. If you’re not for the autonomy and liberation of marginalized people we ain’t got shit to say to each other)

📚📄 Books (Musashi Miyamoto, Audre Lorde and Terry Pratchett are some of my favorite writers)

🤔💭🌞 Philosophy/Spirituality (Less interested in what the things I’ve lived around my whole life have to offer than I am in the ideas and perspectives that come from people and places outside of where I live. If you’re a Nietzsche fan fuck you.)

Funny (funny)

Music I Listen To:

Rammstein, System of a Down, Death Grips

Johnny Cash, Tammy Wynette, Willie Nelson

Phoebe Bridgers, Fiona Apple, Karen Dalton

Ramin Djwadi, Hiroyuki Sawano, Jesper Kyd

Tags:

#myface - Face pics

#personal - Anything I write or post myself

[dimensionalskully]

I recently found out most of my family has been questioning my pain for a long time. My great aunt had called my mom a while back and actually CRIED because my toxic aunt told her that I am not ill and I don't have pain, but that her sister has it so much worse than I do and can be excused from being here to comfort my grandmother during her mourning.

As well as others in my family because they see me not using my cane all the time. The thing is I have so much joint pain anymore it hurts to hold onto the cane to help me walk, so if I'm home or in someone else's house where there is ample places to sit down if needed, I'm not using it. It upsets my great aunt because she has seen me cry in pain and she has been on the phone with mom while hearing me cry as my mom rubbed pain cream on my back.

Sometimes I imagine what people would say if they could physically see the issues. If they could see redness from the pain I feel inside, the could see the bone spurs stabbing and the degenerative disc disease. The havoc on my colon from crohns and the pain in my uterus from an unknown reason. The migraines I get and the burning nerve pain that spreads across my legs and back. Would they even apologize? Would they even feel bad? I can almost hear the condescending tone now.

I personally don't care what they think or say, I know what's wrong with me (chromic pain wise at least). I feel bad for the people on my side who want to defend me, but can't tell the others how it feels because they don't completely know. It sucks there are people out there so bent on making people with chronic pain feel so guilty about something we can't control, just because they don't believe in it. I had one family member hug me recently and they did it too rough and I hissed and said "gently please" and they responded "I barely touched you, I thought you were getting better?" "No, just management. This won't get better, ever" and it blew their minds that there isn't something that will help. Then their husband asked me "is it contagious?" Umm...no? Who makes these people? Those are the people who need to be followed and randomly punched through the day and as the pain subsides from that punch, BAM, ANOTHER ONE. ALL...DAY.

It's just infuriating and completely unfair.

[delta-hexagon]

hey y'all! your friendly neighbourhood chronically ill and chronically poor hexagon asking, once again, for a little help if at all possible :')

i get paid next wednesday, June 11, but between then and now i have.......... 20 entire dollars to my name! YAY CAPITALISM

i need to put gas in my car and get food to last the week, if anyone can donate or help spread the word that would be greatly appreciated <3

[kaladinstormblessd622]

IN NEED OF MUTUAL AID!! i am living with debilitating crohn’s disease, as well as having wisdom teeth , one of which has cracked in half. my insurance does not cover the extraction, and i am unable to even work my job as a customer service representative because talking causes so much pain. to get all my wisdom teeth removed would be $565, but to get the most problematic one removed would be $175. if anyone would be able to help, it would literally save me, as i can’t be out of work much longer.

cashapp: $Raughtweiller22

venmo: @ jakeraught

paypal: @ Raughtweiller622 (similar to cashapp but with a 6 in front of the 22).

any little bit helps, i genuinely cannot love with this pain any longer!!!

[crippledpunks]

shoutout to everyone who struggles with focus. so many things can cause a horrible relationship with the ability to focus- ADHD, autism, depression, chronic pain, intrusive/invasive thoughts, OCD, schizophrenia, bipolar disorder, brain fog from fibromyalgia, GI problems, MS, EDS and other chronic illnesses, chronic fatigue (CFS/ME), and a lot more. you're not spacing out or losing focus because you don't "want" to pay attention. the harder you try to focus when you struggle with it, the harder it gets- it's alright. you're not doing this shit on purpose, despite what they tell you. there's a lot of shit to distract you, no wonder, it's not your fault.

[agentxpoe]

My mom: Yeah I think I have an intestinal infection I'm having [concerning symptoms]

me: Yeah those are my Crohn's flare symptoms you should go to a doctor

[chronically-crying]

gonna be real if I heard someone say that eating vegetables was detrimental to their health when I was little I would've been like "how?? that sounds fake" but now that's me and I'm like wow this sounds fake but also it's so real and so sad for me bc sometimes I just wanna nom on a whole bag of baby carrots but I know if I had even half of one baby carrot it would fuck me up for the rest of the day, or at least it would when I'm in flare

[snowpetal-starshard]

sure, totally had 18 hours in the ER and discharge home but unable to work all week (unpaid) on the plan this week

Still need surgery, still need to lose weight to get it, still working on it but the goalposts are very very far away

The phrase “small bowel obstruction” makes me shudder at this point