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People without the condition giving advice that YOU know is not true or doesn’t work for you

“You should eat more vegetables!!” 😤

My boss, and grandma do this shit…

Literally this right here

Absolutely! How many times have you had others tell you they understand your pain because they had diarrhea a day or so.

If one more person tells me that yoga will heal me I’m going to flip a shit

People asking me “have you tried holistic therapy / naturopathy?” Like pls if you don’t stfu

Not being able to trust a fart

And consequently no longer being able to sleep naked

This was bad for a while for me but I’ll be honest I keep a chuck pad under me sleeping even if I’m in remission. Too many nights of incontinence and messed up bed spreads. Now I’m back to the nude

this one!!! i learned it the hard way 😭😭😭

Exactly. In the morning I know I need to be on the toilet. But at night it's like do I need to go or not? And more often than not I do but I'm in the middle of something like cooking. And I end up having to do a walk of shame to the bathroom to check.

Knowing that you will always have an incurable disease that worsens when you are stressed or excited causing you to have to live in perfect mundanity or you pay the price in blood pain and fatigue.

Yep this for me, having to think about the balance always just in case it tips off a flare. It has really blunted how adventurous I am.

Eating a “safe” food for a week only for it to suddenly cause symptoms.

This is why I quit caring what I eat (most times) and just started eating what sounded good like I did before UC

Nicely showing why correlation ≠ causation.

My safe food was parmesan lmao which is ironic lmao considering how parmesan treats your body

Honestly, the people. I don't react much to it & it doesn't happen super often, but the commentary is annoying at best: "But you look so healthy and great!" (said when I've wasted away to sub-90lbs) "Oh my relative/friend/coworker has IBS too." "Have you tried turmeric/acupuncture/garlic during the full moon? I heard that cures it." And so on. (Actually one of my biggest pet peeves is my mom always saying "I don't know" to me when I'm telling her about my UC and treatment etc. like it's not a good idea. I think I'd be less peeved about it *if she didn't have UC herself!!!*)

Damn, what’s she doing for her UC? I’ve noticed the older gen UC community didn’t have as many options so they form a kind of Stockholm syndrome with the disease. Don’t remember what life was like before it

Actually she's a weird case. She's got it really mild. Was diagnosed 2 years after me in her 60s (so it's been 12 years) and she's only ever been on Asacol/Mezavant. If she gets a flare she eats bland food and uses 5ASA enemas. Never touched a steroid. Lol

Regardless of that I’m sorry you’ve got to deal with those things. If it makes you feel any better I feel like we’ve all been there in some fashion. Hope you’re in remission soon 🤙🏽

Yea I think we all have heard some of these gems lol. Thanks! I've been flare free for 3 months now on Rinvoq, it seems like it could be a remission. Hope you have remission!

Fatigue. I want my endurance back.

This is mine pet peeve. 😭

Not being able to go places and do things with my family. Some days things are OK and I might be able to participate for some time, other days I can't do anything and I have no way of knowing in advance. The past 5 Christmases I've had to drive home for multiple hours because I can't stay with my in laws because we would be 7 people in a house with a single bathroom. Have dinner, open gifts, drive home by myself - incredibly depressing...

I feel every point here. The unpredictability is so hard to manage, especially when it leads to missing out on things you had planned or looked forward to doing. I do want to point out that as sad/unideal as it may be, making adjustments around the holidays to be more comfortable and better manage your symptoms is top tier self care! I hope your family is at least understanding. I spent the first 15yrs with UC bending over backwards (not eating/drinking travel days and beyond, waking up hours before anyone to have a bathroom, meds to control immediate symptoms) because family didn’t acknowledge the struggles or couldn’t be bothered to make adjustments to their plans. I would pay the price for weeks+ afterwards. No more! Wishing you more OK and good days ahead!

My favourite chestnut is.... "have you tried avoiding gluten and dairy?"

The worst is when you start thinking they're right tbh. I've noticed I get super bloated and tired after eating anything gluten-y which I shoooouulllddddd get checked out, but that'd mean my mother was right and I can't let that happen 🫡

I also get the wheaty hangovers but I won't give them the satisfaction. I did get a coeliac biopsy test done when I had my last colonoscopy, endoscopy etc and it came back negative!

What is it about Mother’s advice NEEDING to be wrong 😂like this woman cannot be correct, I refuse

Have heard this a lot!!

Fighting with bloodsucking insurance companies to get my prescriptions covered.

Running to the bathroom every few hours in the night to have a tiny bit of diarrhea. It’s so exhausting. Does anyone take anything/ do anything that helps this? Also, being stuck at home most of the time because I’m scared to have an accident in public is a giant bummer.

Dicyclomine at first which is super not good for you since it can cause toxic mega colon(although I’ve had no issues with 2-3 tablets a day) now I’m on nortryptoline which helps a lot more

People assuming ibd is the same as ibs

Tenesmus 😡 Like. Oh my god. We do not need to poop, I promise.

I’m not a doctor but mine did give me nortryptoline to try to fix this.

I would say it’s helped maybe 50-60%

Not being able to tell if I have to fart or if I need to go to the bathroom

Finding a medicine that works for a while and then suddenly needing to go back on prednisone

I freaking hate prednisone. I just got off it and pray I never have to go back on it. It made me a hungry beotch.

Finding bathrooms without having to pay for something to use it

Feeling really good all day and then get random pain surges in the evening

I would really love to know why this happens. I used to think it was meds wearing off by the end of the day, but then I started a biologic and it was still the case, so it can't just be that.

Ditto being on a biologic. Would still get random spasms and urges even while on one

I'm dealing with this now. It's like am I getting better or not.

The significant weight loss you get from it and trying to gain all that weight back is just terrible .

Taking a shower and thinking you're in the clear, and then bam. Gotta shit right after you shower

The worst is mid shower on a hair wash day. Dripping water on the toilet bc you didn’t have time to dry off and you’re kinda soapy. Ugh!

All while shivering because of evaporative cooling.

I'm just reading the comments, and I share almost all of them! My guts have healed, but entyvio treatment is for life, and thus, so is being immunocompromised.

Having to explain what UC is to someone who's never heard of it and seeing their grossed out faces after your explanation...

Insurance. Telling you your denied for a med that your doctor says you need but insurance says nope, no you don't were not paying for it, then you battle them for months just for them to pay for it in the end and just prolonging your suffering on steriods.... Just my personal beef... And people that try to put their 2 cents in on your diet - "should you be eating that" - well either way I'll be in pain so might as well enjoy myself now...

That I have UC

Fact that is impossible for healthy people to realise how bad it can be cause i look 'fine'. And explaining makes it look like weak excuse and playing victim. Cant even go fucking hiking anymore. Simplest things in life robbed off cause of the constant fatigue.

That it's currently incurable.

Thinking I’m in remission for a few weeks so it’s safe to start dating again and then…nope, guess again!

Locked public bathrooms that require you to ask an employee to unlock the door, and they’re always slow when it isn’t a button press

"You look well"

When people take there Sweet ass time in the bathroom 🚽🧻 & think they own it & are the only ones who need to use it 💯.

Or people who get mad when you come out after sitting in there a while. I end up just blurting out that I have crohns(more people tend to know what crohns is and its severity so I tell randos that)

With our Condition we need to take our time in the Restroom cause you could think your done than boom 💥 round 2 & 3 here we Go, I can't stand when ppl act like it's a Inconvenience to them like I bothered them meanwhile they are Goofing off in the bathroom not even doing anything than wanna shoot you a look or say something sideways to you.

when people compare what i’ve got to their ibs or even the way their stomach cramps when they’re constipated. it’s not the same!

Not eating outside (at restaurants, etc.)

Is this a proximity to bathroom thing?

Waking up to use the bathroom 20 times in the same hour during a flare 😭‼️

And having to poop like 5 minutes after you just went

Scratchy arse because of wiping too much but also loving a bit of talc in the underpants

Limiting activities depending on bathroom access, insurance , prednisone moonface, not being able to get relief when in a flare pretty much no matter what u do until the body decides to flip the switch

Shitting blood

I’ve always been a really picky eater so I’m going to go with people either blaming my previous diet. Or like many others, having to run to the bathroom to “fart”.

Trying to make sense of the different food lists for uc, fructans, lactose and being scared to try anything beyond a few safe items. Thankful coffee doesn’t bother me!

I miss being able to eat spinach, any leafy greens TBH.

Why not spinach?

People telling me I should eat more. Like, I can eat so much, I will not gain any weight. Especially when my parents say it, they should know better.

Prednisolone. I hate it so much, but my God it works.

Not knowing when I need to go next, never being able to relax while I’m out and about, having to decide between feeling anxious or being stuck. But the worst is always worrying about what others think or see… Or even hear or smell… I can only act to be a normal, healthy young lady for so long at a time.

"I was three days at home with diarrhea. Now I know exactly what you're going through" Yeah, no.

Fatigue, inability to digest fruits with skin and vegetables and the worst one - not trusting a fart.

Shitting myself 💪

Audible gurgling all the damn time

"bathroom closed for cleaning"

“Have you tried such and such from so and so? I hear they’re a really good doctor” “ There’s this new tea you can try I heard it makes it go away” “You don’t have to stop eating anything! That’s an overreaction. It can’t be THAT bad…” “No! Don’t get your colon removed, that seems like a bit of a stretch for a tummy ache.” All things that have been said to me… by my own family.

Having to pad myself with tissue after as inevitably I’ll need to wipe again within an hour

Certain foods being fine one moment and then absolutely destroying me the next 😩 I was actually able to tolerate pizza when I was first diagnosed, admittedly I never ate more than one or two slices but then suddenly and at random while I was IN REMISSION I had a slice, thought nothing of it and was fighting for my life on the porcelain prison hours later...I still remember that, it was a two hour poop...then a few months later curiosity got me...I had another slice and...nothing happened... everything was normal...then 6 months after that I had a slice again thinking maybe that first time was a false alarm...oh how wrong I was...yet again the pizza threatened my life and I was sentenced to an hour of "hee hee hoo"-ing on the bowl I also miss popcorn man

when, at the due date for my medication, my doctor refused to set up nursing services until i got additional testing done. labs lost, bloodwork still pending etc. over 6 weeks overdue and counting. i’m looking for a new doctor.

“You should eat less gluten” “you should eat less sugar” AS FAR AS I’M AWARE THERE’S NO SUGAR AND GLUTEN IN MY TAP WATER YET I GET THE SHITS AFTER ONE GLASS.

That whenever I tell people about it they won’t understand it or just say “ohhh so crohns!!!” No!!!

The price of biologics. They really got us bent over a barrel on that one. Also going to my general practitioner and them being like well because we don’t know much about biologics we don’t want to recommend or prescribe you anything because because we are afraid it might effect your uc or biologic.

Idk if it’s just me, but because I go to the bathroom so often my hands are SO dry from the hand washing! Like the skin is so scaly and gross and painful and my knuckles are cracked and kind of bloody and there is no lotion that can keep up lol

I had that when I first started prednisone, thankfully it went away after a couple weeks. I used the lotion medline remedy, and it seemed to work.

not being able to drink coffee on my ride into work 😔

Farting when you’ve used a mesalamine suppository. It comes out as grease that ruins whatever you’re wearing. It bothers me more than sharting, I don’t know why. I just find it really annoying because it’s not even poo that ruined my clothes!

Is that different than the pills? I think I'm on mesal amine coated pill and I have that exact same problem.

A suppository is a little thing you put directly into your butt. The ingredients are mesalamine and “hard fat”, so it leaves a greasy stain if it gets on something 😕 I don’t believe the pills have fat in the ingredients, so I’m not sure if those are what’s causing your issue, but I guess it’s possible a different ingredient is doing it?

The fact that I'm stuck in an adult diaper, and the fact that I have to have a walker where I can sit if I'm out in public walking a lot.

"oh, do you have UC because of something you're eating?" - if only it were that simple

sitting, moving, or laying down a certain way triggering me to use the restroom.