Crohn's Sucks

A place for those of us who are tired of going to the bathroom 12 times a day OR going out and watching everyone else eat OR how you always hear “Oh that sucks” or “My friend’s cousin’s aunt’s boyfriend has that”. This is our place to freely express all the things that suck about having Crohn's

[crohns-sucks]

Chronic illnesses and Harry Potter!

[lieber-tot-als-rot-deactivated2]

[crazy-pages]

Okay. This seems pretty insane if you don’t know what the existing state of terminally ill patients’ options is. So let’s go over that.

Terminally ill patients can sign up to be part of pre FDA approval trials for treatments which might potentially cure them. As these treatments are experimental, untested, not guaranteed to get results, and intended to provide profit to the medical provider in the long run, patients cannot be charged for these experimental treatments. As it should be. It’d be pretty unethical to get people to pay you to be your guinea pig for treatments which may not even help them.

This “right to try” law changes that. It makes it legal for terminally ill patients to be charged for experimental treatments. Furthermore, it removes FDA testing restrictions from the process. Currently a company which tries an ‘experimental’ treatment they know won’t work will get the hammer dropped on them by the FDA. But under this new process, medical providers would be legally allowed to provide ‘treatments’ they know won’t work, without oversight. This would legalize medical predation on terminally ill patients.

Labeling this bill ‘right to try’ makes it seem like terminally ill patients aren’t allowed to seek out experimental treatments right now. But they are! All this bill does is make a terminally ill patients more financially burdened and more vulnerable to predation.

That’s why the Democrats blocked it.

[lectorel]

‘Right to try’ is like ‘right to work’. Bullshit designed to support companies’ ‘right’ to profit at the expense of individuals

[crohns-sucks]

Is missing a lot of school common? If so, how much school?

It really depends on the individual severity of Crohn’s Disease. With a mild case, you only miss school for doctor’s appointments, illness from a compromised immune system, and occasional bouts of Crohn’s pain/symptoms. I usually missed 10-28 days per year after being diagnosed at 8. 

But if you’re on an infusion, you’ll miss more school for those appointments. If you need surgery, you’ll also miss more school. 

How much school you miss is really on a case-by-case basis.

[failfox]

[in honor of the two year anniversary of my surgery. Sorry I’m on mobile and can’t readmore it]

Two years ago I underwent surgery to remove 10" of my colon due to damaging inflammation caused by my Crohn’s. I remember being asked over and over if I was nervous and I honestly don’t remember being seriously nervous or getting anxiety over the thought of this major surgery.

I think i was partially being brave, but I was also desperate. For nearly two years I battled to do simple things like get off of the couch, tie my shoes, or even walk comfortably sometimes. And for 7 months prior to this i had restricted my diet, cutting out all vegetables, save for tomato slices, all fruit except for pear slices, wheat breads, and every kind of seed. My third major flare up was definitely my worst.

Today I am still in the remission brought on by that surgery and sustained by my infusions. I am relieved that for now my disability is at a minimum. I am also thankful for the support I have constantly received from my family and friends and the strength they have helped me cultivate in order to take my Crohn’s head on.

This is mostly retrospective, but one thing I think about a lot is how I don’t agree when people say they are not their disease or disability; I am very much my disability, I am very much my disease - but that’s not all. I am my love of movies, of reading, of live theatre, of cooking, of video games, and so much more.

Asking me to separate myself from my disease is disrespectful and asking me to be dishonest. You don’t get Michigan without harsh winters and shitty construction. You don’t get great X-Men movies without confusing timelines and weird continuity errors. And you don’t get me without Crohn’s disease.

[crohns-sucks]

Hey! I have crohns and honestly am super out of shape and I've been looking into yoga! I was wondering if you or any of your followers have any good yoga websites or blogs I could follow with a small or large focus on poses helpful for Spoonies :D

I am a yoga newbie. I’m currently working with Hey Workout (as in, they gave me a free trial in exchange for blog coverage), and I love the Easy Yoga classes they offer. But previously I would just go to youtube and search “beginner’s yoga” to find classes to try. Or search “relaxation yoga,” which tends to focus on deep breathing and good stretching, without many balance or strength poses. 

Brita

[crohns-sucks]

has anyone in the United States claimed disability for their Crohn’s and if so what was that process like and what does that mean for you? 

[did-you-know]

Source

[crohns-sucks]

Snapchat lets you easily talk with friends, view Live Stories from around the world, and explore news in Discover. Life's more fun when you live in the moment!

I’m snapchatting all day about my Crohnie life! I have a Remicade infusion this afternoon. Follow me and commiserate! 

[crohns-sucks]

Hey, guys! Last week I did a video during my Remicade infusion. Technically it’s no longer Crohn’s & Colitis Awareness Week, but for those of us with an IBD, I feel like every single day is about trying to get people to learn more about IBDs. 

[failfox]

going from a crohn’s flare up back to remission is a series of relearning how your body works

most often I have to relearn how to eat because my appetite plummets. I have to relearn how much is enough food to get me through the day but also not eat so much food I get sick, which is difficult because food is amazing and being unable to eat food is awful

the flareup I was in caused me a great deal of fatigue and I had to fight my physical limitations daily. today I relearned that when you’re not in a flareup the limitations your body presents are important and should be listened to

I ran further than my body can handle and I’m fairly certain I gave myself shinsplints, so now I’m wearing a knee brace and hoping between that, stretching, and icy hot I’ll be walking normally again in a week

[crohns-sucks]

Spoiler Alert for those who wanted to read the article.

[crohns-sucks]

This is a GREAT visual aid for a way to describe mental illnesses

[chronic-illness-cat]

21 Things Only People Living With A Health Problem Know

Being sick is hard. But it's not impossible.

[crohns-sucks]

Hey friend! Sorry to hear your doctor left! I go to the GI at Duke and I have really enjoyed my doctor there. It's Dr. McGrill and I don't know I she's semi naturalistic but she is a fairly open doctor an I have really enjoy having her as my doctor. I hope that helps and I hope you find a good GI soon!! :))

I'm trying to stay closer to home(Cary) but I will def look into her. Thank you!

[crohns-sucks]

I have good news this week about my Crohn's. I was a mild case 4 years ago when I was first diagnosed. My doctor said if I took care of myself well enough, I can potentially reverse it. As of this past Wednesday, I am Crohn's free! IBS w/ Constipation is my new diagnosis. Well 90% IBS, 10% Crohn's. I still have tummy troubles, and if I don't take care of myself I can relapse, but right now, my upper and lower endo looked clean!

That is awesome! It’s a good reminder that IBDs can be all over the place. I hope to eventually get back to a mild case, like I once was, but alas, I’m currently “moderate.” Good luck to you! Any advice for anyone else with mild Crohn’s?

Bisous, Brita

[crohns-sucks]

What To Do When FOMO Is Real

What to do when FOMO is real? How do you handle it when you really are missing out due to health?

Thoughts on living with a chronic illness and wishing you could do more with your life.

[like-an-amazon-blog]

You are not allowed to pretend that I am not sick.

You are not allowed to say that I limp because I am seeking attention

You are not allowed to force me to walk faster than I am able

You are not allowed to call me lazy when I spend the day in bed because I am in too much pain to move

You are not allowed to force me to take the stairs when I cannot move my legs

You are not allowed to make me feel bad for being ill

You are not allowed to push me into doing more than I am able

You are not allowed to yell at me that I am fine when I break down and cry

You are not allowed to make me hide my illness behind a mask of apathy

You are not allowed to police my identity as a chronically ill human being even though you are me.

I wouldn’t let anyone else do it, so why am I letting myself get away with it?