#chrons

[rabbitfootbutch]

having ibs/ possibly Chron’s/ possibly gastroparisis makes me so angryyyy like why can’t i just eat food. i need to eat food to function. but i just can’t. even water makes my stomach ill. how am i supposed to function!

[chronic-b1tch]

A rant on chronic illness treatment

I gotta let it out, man. I've got IBD.

I believe that those with IBD (and any other CI really) need more attention, help, and advice.

My experience hasn’t been a good one.

Between a mix of false promises, and a lack of communication, the truth shone bright despite the easy comments doctors would throw my way.

“You’re in good hands now” 

Is a sentence I can’t seem to forget, as I span over the last few desperate years, full of medical neglect.

Those hands would never pick up the phone.

“There are many options for treatment, it’s going to be ok”

At the beginning of my journey, only to be under-treated.

The strange ease and confidence that I was presented with at times, was trickery at its finest.

That is not to admonish all health specialists in gastroenterology, however, looking back… it appears we are still not taken seriously enough.

As a result of our chronic condition(s), I think we can become so accustomed to any pain and discomfort, that tracking it can be difficult. Expressing the truth of our condition can become hazy, almost illusory.

What a 7 in the pain chart for a typical person is, turns into our 4 at most.

When we only know odd sensations in our abdomen, we cannot track any real changes or state to report.

How can we differentiate and state a case to a doctor, when we have already told them. From the beginning. 

Health professionals seem to be stuck on looking for changes and differences - yet it simply IS different and unusual - RIGHT NOW. Existing as is.

I feel that specialists are almost tricked by the consistency of the chronic ailments, as well as us. 

They become so used to the idea that this is just how it is going to be, that they almost give up on seeking the best option: to be symptom-less.

They forget that their patient is a human, in pain and shame. 

It might be ok for them to simply try and maintain an equilibrium, or to have a faint hope of remission. But for us, we are living through the physical frustrations that they are ok to leave as is. As long as it isn’t extreme. As long as it’s not so cruel that we drag ourselves to urgent care.

I don’t want to be hateful of health professionals, as many are honestly angels sent to earth, in my opinion.

Personal experience has shown me the other side of that, though. 

And I have to let it out. Otherwise, I will wake and think about what they said to me, every day.

They’re supposed to specialise in our condition yet seem to fall short, and lack a human touch. They phone to ask interview type questions, and never want to know how it’s affecting you.

Even then, it’s almost as if they want to shunt off the responsibility of you, to another colleague.

At most I was asked if I had someone to talk to. I was lucky I did.

“Please be someone else’s problem” is something feel, lurking in the background of our conversation.

Again, we have to live with the condition, yet others seem terrified of handling it with us.

A GP asked me “What do you want me to do?”

As if I had all the answers. (Home skillet, Idk either)

I sensed fear in their tone, and defensive behaviour, while telling me they couldn’t help.

They were scared to touch me. Too much responsibility. Too scary.

Surgeons helped me the most, after a long battle over years with the pain, and the stress, and the fear. 

After failed attempts at managing it and large spaces of no communication from my “team”, my condition had spiralled. It had gone too far, and I was in notable agony.

Complications had happened, and drastic measures were necessary.

It had been missed. I had been so used to pain, that it confused me. The nurse I was speaking to was either so desensitised, or so overworked, that they didn’t clock the signs of infection.

It was obvious. I told them repeatedly I had fever symptoms, and even asked if it was a common thing in flares.

I think about that often.

Sheepishly, they visited me once in the hospital they worked at. They admitted to one failing, and I foolishly pretended to be friendly.

Reminded of half of what got me into this trouble: Not being a b****.

So what to learn on your part in your journey with this condition?

BE A B****. 

Tell them if they’re not being helpful.

Tell them if you don’t feel listened.

Get second opinions.

Annoy the heck out of people.

Never shut up.

Even if people roll their eyes when they talk about you, at least they’re talking about you and noticing you. Better that than being a wallflower they forget about.

If something changes without communication, follow them like a hound and always ask “why?”

GET THINGS IN WRITING

Ask questions in writing too.

Ask for documents, copies of information that regard you

Thank you if you read all this.

[tsami]

oooh I just hate when my disability is disabling

[hellyeahscarleteen]

I really want to have sex, but I don't know how, and I'm queer, chronically ill and isolated.

Nurse, author and comic Kelli Dunham, answers a new advice ask today at Scarleteen: https://loom.ly/5-ybcE8

“Longing for intimacy is not just normal; it’s literally part of being human. We have an evolutionary-level need for other people in our life. Without this drive to connect with other people (sexually and otherwise) and to actually have sex⁠, we wouldn’t have continued as a species. These drives go deep!

In addition to our intense physical and emotional drives, we are continually steeping in a culture that rewards and is almost fixated on coupledom. It’s not as simple as avoiding a rom-com, either. I’ve even said aloud in a movie theater, "Why is there a love story in the middle of this superhero movie!”

As you mentioned, social media dramatizes this fixation even more. The extreme engagement events (12 people and 12 dogs in tiny matching outfits doing a choreographed dance in front of a rainbow-colored champagne fountain or other such nonsense) are almost easier to ignore than those continual low-key celebrations of romantic⁠ love: “My partner⁠ brought me a popsicle because I had a sore throat. Best partner ever!” It can start to feel like everyone is in a relationship⁠, and everyone’s relationship is fantastic. Of course, we’re just seeing the highlight reel, so it’s entirely possible — and probably likely — that the relationship we see reflected on social media isn’t quite that amazing. And, just so you know, according to 2020 research from the Pew Foundation, of the lesbian⁠, gay⁠, or bisexual⁠ people they surveyed, 47 percent said they were single.

I know statistics aren’t necessarily consoling, especially in manners of the heart, but I mention this here because sometimes when we really want something (like intimacy, as you’ve described) and are not able to get it, we start to wonder if something is wrong with us for wanting it, or if the wanting itself is the problem. Neither are usually true.“

[kenyscouch]

the pains of genetically inherited diseases

so basically, i found out about 2 years ago my mom has chrons. it didn’t seem super important, cause i had no idea what it really was. basically it means your stomach can be really sensitive to certain things and can cause you to have severe stomach aches, diarrhea, nausea, vomiting, etc.

Well earlier in 2022, my brother got hit with his first chrons-type reaction, and he lost a shit ton of weight (because occasionally with chrons/uc you get malabsorption where your body takes little to no nutrients from the food you eat) and he was throwing up and was really sick. that’s how he found out he had chrons.

Skipping ahead a few months, i was in italy on a trip with my family when i started to get severe stomach aches and nausea after eating meat, drinking milk, and sometimes even just plain old pasta. i was so goddamn confused. then i started to loose weight (which is weird for me because i don’t really gain or loose weight cause i’m generally fit). The stomach aches only got worse, i started throwing up after certain meals, and sometimes couldn’t eat from the fear of the pain.

that’s when everything clicked. basically, i found out i ALSO have chrons. so there are some things i can eat that won’t kill me, and others that will put me in bed for 2 days straight.

long story short, if your parents have hereditary disease, please don’t ignore the signs that you might have it as well.

also for those who might be worried about me, i’m fine, im still feeling out what i can and can’t eat (because it’s different for everyone) but generally i’m doing pretty great and am back to a normal healthy life.

[wearingmystripes]

I had an MRE on Saturday because surprise surprises my stomach is still in shambles and as per usual I was keeping my expectations as low as possible and assumed they would find nothing

Anyways long story short they think I have Chrons… which is absolutely not good and now this month I have to have another endoscopy & colonoscopy

Will it ever end? Probably not!

[crxptidx]

im getting a shot in my dummy thicc badonkadonk curvaceous delicious ass cheeks tomorrow do y'all think i could use that as leverage to get bobba

[rabbitfootbutch]

recently i've really been struggling with my fibro and chron's and was talking to one of my bosses who is also disabled. and she said something to be that like,,, really hit. she was just talking about how being disabled is natural. if we weren't natural, we wouldn't exist. if you ever feel broken because you're disabled, remind yourself that you are not a mistake; you are meant to be here, even when flare ups are happening. even when it's hard. and it was so great to here because disabled people are part of this ecosystem, just like everyone else. you are natural. you are natural. you are natural <3