What Pisses You Off the Most About Crohn's Disease?
Last updated: July 2023
Not a lot of things about Crohn's are consistent. But what is something we can all count on Crohn's to be? It's frustrating. It's painful. And honestly, it pisses us off.
Via our Crohn's Facebook page, we posed this question to the community: "What pisses you off the most about Crohn's disease?" We received more than 300 comments in response.
Even if I am doing everything right . . .
"It's always there . . . even when you think you've got the right meds and are eating the right things, it has a way of reminding you it's still there."
"A flare can come out of nowhere. I think I'm being super careful in what I'm doing and what I'm eating, then it just pops up."
Pain, urgency, diarrhea, and more pain
"That I can't feel comfortable sleeping at someone else's house. Wouldn't want to be caught crying in the bathroom with horrible pains and diarrhea."
"The urgent trips to the bathroom, the pain, and the bloating."
"How it's affecting my joints . . . painful, swollen hands make work very difficult . . . it all sucks!!!"
"Spending so much of my time with the toilet. We're on a first-name basis."
The unpredictability of Crohn's
"Never knowing what foods will make me sick and people not understanding why one day I feel good and the next I'm wrecked."
"The unknown with this disease. It's so unpredictable. One day you're fine, then the next day fatigue, pain, and depression."
"It is unpredictable. One minute you are at the top of the world, next thing you know you are looking for a bathroom and a place to nap."
"Our son is 15 and was diagnosed at 13, and we hate how unpredictable and how it dictates his life."
"The unpredictability! Can turn a day or moment or plan on a dime."
"Inconsistencies with when you will feel good and when you won't . . . makes working extremely hard . . . I hate being labeled 'unpredictable.'"
"My doctors not listening to me when I know something isn't right."
"Doctors who brush you off and don't take you seriously. First, it took forever to be diagnosed and going to multiple doctors. Now even being diagnosed, some symptoms get brushed off because they don't feel it relates to Crohn's."
"That doctors only treat symptoms and rarely discuss supplements, diet, exercise, and many other ways to literally heal Crohn's."
"I'm tired of being tired. Extreme fatigue and pushing so hard to seem normal."
"How fake I have become by plastering a big fake smile on my face while I feel exhausted from the inside out and the top down."
Plus the mental fatigue
"It makes you feel like you have no control over your body. You can't make plans, you have to know where the bathroom is wherever you go. Tired all the time, doesn't matter how much you sleep. It's knowing this is your life. For the rest of your life."
"Feeling guilty and feeling like I'm not doing enough even though I know it is out of my control and knowing I'm trying soooo hard and struggling to just keep up on even doing only the basics of everyday life. And getting onto myself about not being able to do as much as everyone around me. The mental side effects of living with this disease are no joke. To anyone feeling the same, you are not alone and you are doing amazing!"
"The all-around suffering it makes people endure. Forcing grief upon one's own self for the life they once knew and the new one now inherited."
"Being a veggie-lover, the hardest is not being able to properly digest most veggies, especially salad, and then not knowing when the pain will strike and ruin my plans."
"Not being able to drink caffeine or eat fatty food. It has completely changed my life."
"That it doesn't matter what I eat, I feel sick."
"The minute I eat something I get a cramp in my stomach. And having to go to the toilet 8x a day."
"Family and friends commenting and criticizing food choices!! My Crohn's causes ever-changing and unpredictable symptoms and dietary needs. I know my body after 20 years of Crohn's, and sometimes you just want to enjoy food knowing you'll suffer the consequences later no matter what you eat anyway!"
People just not getting it
"People who think their suggestion will cure your Crohn's even though you've spent years going to multiple specialist doctors."
"How people don't understand that you really are sick even though you don't look it, and want to give you advice about what to do to 'feel better.'"
"How uneducated people are about it. I have been described as attention-seeking because of the horrible pain that comes with this disease. I'd love for those people to walk in my shoes for a day to understand the debilitating pain that comes with this disease. Also, when people give you unasked-for advice and sometimes being pushy on how to 'cure' or treat this incurable disease."
"1. People saying they understand cause they have IBS. 2. People saying 'just work out, you'll feel better.' 3. Never knowing how you will feel day to day. 4. Even when you are in remission . . . you still feel like CRAP!!!"
"That I have it! And that people say . . . 'You don't look sick.'"
And so much more
"Feeling like I'm a disappointment to my family because of the canceled plans and missing out on things. They deserve so much more."
"The time it takes away from my family and friends. The fact that as much as I don't want it to control me it does on every level. That my children have had to watch me spend years being so sick and my husband and I feel I am not myself anymore. Lack of education for others. Lack of being able to afford the medications. Looking for a bathroom everywhere you go. Not being able to enjoy a sit-down dinner out and about. Giving your life up to the monster inside you."
"It's easier to list the things that don't piss me off about Crohn's disease."
What pisses you off the most about Crohn's disease? Share with us in the comments below.
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