4 THINGS YOU SHOULDN'T SAY TO SOMEONE WITH IBD

Hey ya'll! Sometimes people say things to individuals who have IBD, #Crohns, or UC and it just doesn't come out right. It can be confusing or hurtful. This person may not have even meant to hurt you feelings, or maybe they did. Anyhow, here are the top 4 things I think you should never say to someone who has #IBD - This is just my opinion, other individuals with IBD may think differently. :)
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*The owner of Ostomy Diaries does not claim to be a physician or healthcare provider. All opinions expressed on this channel, or web page are solely the opinion of an ostomy patient. If you are experiencing a medical emergency or have other health concerns please contact a medical doctor.

[@michellesauter5956]

You don’t look sick, is one of the worst. People don’t understand that we’re just putting on a brave face.

[@OstomyDiaries]

Yes!!! Exactly!

[@mrsmith9079]

Another one is "At least it's not cancer", as if a chronic lifelong condition was a minor issue.

[@OstomyDiaries]

Just because your issue may be “smaller” or different doesn’t mean it’s not real to you. 💜💜

[@RS54321]

Friends assuming your flare is comparable to their 3-day flu or headache that they'll quickly get over. My friend just invited me to come out to a restaurant with 10 people (to which I declined), assuming I've gotten better in a few days, and ignorant about food triggers and needing to go to the bathroom, on top of the overwhelm of all those people, then told me she was also not feeling well and had a headache. It takes great patience and strength to not be bothered by their ignorance.

[@michellesauter5956]

It’s easy to feel guilty when people’s perception is that there’s nothing wrong with you, and that you should be doing more.

[@OstomyDiaries]

They just don’t understand because they aren’t going through it. 😔

[@tellyourfriendsitsmejordi]

Omg… before I found out I had Crohn’s, somebody told me “You look really good, have you lost weight?” And it made me cry, because I was less than 100 pounds so I didn’t feel like a looked “really good”

[@RS54321]

And I bet you were so weak and exhausted.

[@baileymoran8585]

The first one!!! I have told people ‘I’d rather gain 250 lbs overnight if it meant I could eat something that isn’t oatmeal without pain.’ Skinny =/= pretty to me. It equals being hungry, and in pain, and knowing that most foods, the best foods, will make the pain worse. Second one: I’m a professional MUA. I hide it even when I have just gotten out of the hospital, because I don’t like having strangers assume I’m on drugs or hungover. That’s another one. It’s also a disease that comes in flares. I’m super athletic so when I am not in one, I look very healthy. Dr’s don’t even get that and it took most of my life to be diagnosed Third one: I probably was fine. Again, it’s a disease of flares. Forth: in my worst flares, I can only have oatmeal, bananas, and broth. I have trouble eating a ton of raw veggies. I agree that if someone makes suggestions correctly based on research or something that helped them, that’s fine. Like, if someone suggests mint tea or ginger for when I want spicy things, great. But don’t suggest trendy health diets you see on insta that are designed for healthy people, like veggie juice cleanses, month long raw challenges, or ‘detox teas,’ which are laxatives, and the exact opposite of what I need.

[@OstomyDiaries]

Good point on 3! We can be fine and then become sick out of no where. Thank you for sharing Bailey. 💜

[@Crishyde1022]

I love your honesty!!!!!! I have Mast Cell Dx. That is why I have lost my large intestines and half of my small intestines! People don’t understand!!! And most of the time it is our family because they feel they can say anything and it want hurt. I have had to really get a back bone And say “ hey that was an inappropriate comment, it hurts” and then explain why.

[@OstomyDiaries]

Thank you Pamela! I hope my videos encourage people. I know what you mean about trying to get a back bone. It’s been so hard learning to speak up for myself. We’re in this together!! 💜💚

[@tamarak9393]

I’m watching this while I have my heating pad on my belly. IBD sucks. The pain is debilitating. Tomorrow I have my first Remikade treatment. Hoping this will make a difference.

[@chrisr7561]

Thanks for this info. I'm a colostomate due to colon cancer. I agree that certain comments to someone who due to medical reasons can't keep a steady weight is wrong. I didn't realize that IBD and/or Crohns patients had an issue with keeping weight steady (still learning - I see you). "But you were fine yesterday" - like no one has ever gotten sick within 24 hours (or less) with a cold, flu, or our diseases flaring up. I also suffer from migraines, so yes - I can be fine one minute, and sick the next. #4 eating better. Ummm. We are under a doctor's care who would have advised us as to how to handle our disease better, including our eating habits. Thanks again! Hopefully, I didn't make any faux pas in my comment - if I did, please educate me as colon cancer is quite different from IBD and Crohns. Take care!

[@speedracer8724]

The only thing that annoys me is how I tell people I have this and specifically how sugar is my main trigger and then they proceed to tell me to have a sugary snack that "oh c'mon 1 won't hurt, you're young" like yes...yes it will lol the peer pressure is very real and makes me not want to go out with these type of bad influences

[@joannaphillips147]

I was told a few months ago to eat this tree fungus for its “amazing anti-inflammatory effects”. Like…thanks my team of doctors didn’t tell me that but I’m sure glad you did. Cured 🙄

[@RS54321]

Most doctors are wholly uninformed about holistic modalities. They won't suggest anything that doesn't go thru clinic trials and makes them money.

[@Astrid591000]

Thank you Amber for putting this out there I’ve had all of those this said to me in the past 💕💕😊

[@OstomyDiaries]

You are so welcome! 💜💚

[@akaPixelChick]

Great Video, thanks for uploading, I’m currently waiting to have the ileostomy surgery.

[@silverphoenix1418]

Hi Ambert. I absolutely LOVE all your videos and respect you so much. Thank you so much. I had my subtotal colectomy with end ileostomy on 27.05.21 for my Ulcerative Colitis. I feel exactly the same as you. IBD is an invisible disease for LIFE and the more people are educated the better. We, with IBD, are all going through the same experiences. Thanks again. :-)

[@OstomyDiaries]

Thank you so much for the compliments! IBD FRIENDS! 💜💚

[@jodiv2928]

eating healthier..ugg. I did everything under the sun to try and save my colon including going to a nateralist were we spent 1000s of dollars on powders and supliment pills and she put me on a no gluten no sugar no milk product diet which I was on for probably close to a year and I still couldnt get healthy

[@TheKarahLife]

Yep! Well said Amber! 🤗

[@OstomyDiaries]

💜💚

[@janethmanalo9293]

thank you for sharing.... your vlogs helps me a lot .... as of now ive been in an ostomy bag for a year...& im kinda get used to it... although i got lonely and down the first time the doctor told me the situation... thank you for being an inspiration...

[@OstomyDiaries]

💜💜

[@gracejohn2144]

Well said.

[@AdoptedYooper]

I've heard some of these things but not all of them; I chalk it up to ignorance and I try not to be too hard on the unknowing. They really don't understand because they don't have IBD. I've had my stoma for a couple of weeks now and I gotta admit that so far it's a real pain; but I'm stuck with this I guess and looking forward to reversal surgery 😒

[@larissabegay6315]

I love your Honesty! I have an illeostomy bag and I'm still getting use to it..

[@OstomyDiaries]

Thank you! It’s a huge adjustment, but it gets easier. You got this! 🤗💜

[@larissabegay6315]

@@OstomyDiaries thank you for your page, you have shown me lots of new things! Stay blessed girl 💕

[@Michelle-qd9gm]

Can I ask you pls what drinks do you drink with IBD ?

[@ThatRNWithAnOstomy]

This is the truth…

[@minecraftressa2740]

I absolutely hate being told to eat better. I love fruits and veggies. Not really an option. I had ileostomy surgery March 29th of this year. Sunday (July 2nd) my family got together for 4th of July. I decided to try to eat fresh fruit (two small pieces of watermelon, two small pieces of cantaloupe, two strawberries, and a few grapes). Yesterday, I had 4 bag leaks, I have the pouch system that is on and one more left. I won't get my new supply order until the 10th or 11th. It is stressing me out. I am afraid to eat and cause another leak. I have love/hate feelings for this ileostomy. Without it, I would not be doing well, but the limitations since my ostomy hates fruits and veggies is driving me nuts. I am thinking of tossing fruits in a blender and seeing if that helps since I have not had a problem with apple sauce.

[@870annie]

U can eat peach!!! The hospital even gave me some when i started to eat after surgery 3 months ago just dont eat the skin!! Also apple and pear without skin!!! Thats what i eat since surgery.. didnt try vegi yet..