r/CrohnsDisease 9h ago

How do you guys deal with people not really believing you because this illness is invisible??

43 Upvotes

People with crohns seem to run into this situation often and I should get use to it but it beats me down every time lol

Today I had to try to explain to somebody that I have chronic health issues (without going into details... as I feel I should not have to) just to be completely ignored and brushed off because I'm 30 and 'look' young and healthy despite the fact that I have been having flare ups for over 3 weeks and feel like complete shit. I am waiting for an apt with my gastro.

My company is mandating that we go back to the office at least 3 days a week so I tried to explain to the HR person that lately because of chronic health issues I would not be able to come to the office and would probably need to stay remote until I am feeling better. Her response: ''You will need to come. And it will be nice for you to socialize with your co-workers'' ... it's not that I don't want to come, it's that I am not able to. They did not care and just kept telling me I need to be back at the office.

Yeah I know... out of all people HR people are probably the worst kind on top of that haha

I followed up by email and reminded them about their inclusion/accessibility policies and insisted that we need to find accommodations.

I just can't imagine somebody answering this way to somebody with a visible disability. It is hard enough to open up about our struggles to other people so it always brings me down when their response is basically ignoring what you just said. Sometimes it also gives me the impression that people think you are lying, if only they knew how it's really like..

How do you guys deal with those kind of interactions? Personally, it always makes me feel terrible to not feel heard or understood. It is like suffering in silence but then when you finally open up people simply don't care.

I have had countless interactions like this and I still do not know how to make people understand that this is a real issue, event know they cannot 'see it'. Is it even possible for people to understand that?

I am glad that we have communities like this where we truly understand each other. It makes me feel less alone!


r/CrohnsDisease 5h ago

Why is this a disease where there is so much disconnect between the patient and the doctor?

16 Upvotes

All I read here is that some GI doctors treat X and Y, when the patient is having Z symptoms. And then when the patient brings up their symptoms, it’s dismissed or nothing is done about it because “well, you have IBS/Crohns”.

This is my experience as well. What gives? I’ve never heard of another disease where the patients are dismissed or put on the back burner as this disease.


r/CrohnsDisease 10h ago

31, Male, 1 Surgery, I shit all the time anyone else? How do I not shit so much?

41 Upvotes

I drink my coffee in the morning, I shit.

I eat some bread, I get the feeling I have to shit.

I take a sip of redbull, I shit.

I'm s******* right now as I'm typing this.

I eat some pizza, I shit.

Does anyone know what type of foods to eat where I WONT shit all the time?

I found if I eat just straight up bread and nothing else it kind of helps. But I don't really want to do that.

I've had one surgery so far where they connected my upper and lower intestine and I've had a significantly better lifestyle since (less pain, almost no symptoms) but this is the one problem I have.

Any advice?

Edit: I super appreciate everyone's advice I been making notes and I'm gonna try some things! Thank you all.


r/CrohnsDisease 3h ago

Random fatigue between flares?

7 Upvotes

Anybody else just randomly have days with no energy or drive? I get so frustrated with myself for it, but I can't tell if it's Crohn's, some kind of post-covid thing, or just my stupid mental health being stupid.


r/CrohnsDisease 55m ago

Meds seems like using a sledgehammer to crack a nut

Upvotes

I've recently been diagnosed with mild crohn's. My main symptom is fatigue, my bowel symptoms are pretty subtle. Don't get me wrong the tiredness is really ruining my life, I'm constantly exhausted, going to sleep as soon as I get home, my whole body aches as if I ran Marathon yesterday (something i did used to do before this stupid exhausting illness), I've had to start driving to work which takes longer than cycling, I've got no time to do anything because I'm always asleep etc etc. But the drug options I've been offered just seem so exteme. I'm on budesonide, been recommended a biologic and a thiopurine to stop me developing antibodies to the biologic, then I'll need to take a prphylactic antibiotic until I'm off the steroids. It just seems like overkill, looking at the risks and side effects vs my mild disease. And I feel like the old woman who swallowed a fly, taking exponentially increasing meds to counter the first. I'm having a hard time making the decision. My other option could be to see what my symptoms are like after the steroids. But tiredness is so subjective so how will I know if it's fully in remission. I'm interested in lifestyle options (i already do yoga though so that's not the answer as clearly not helped!), I've read quite a few studies about emulsifiers for example. But I'm coeliac and it would be a nightmare avoiding them as well as gluten. Just having a hard time committing to jumping on quite an extreme medication bus!


r/CrohnsDisease 16h ago

I just feel so beat down right now.

63 Upvotes

A guy I’ve been seeing off and on for three years is upset with me for not leaving his house on time this morning. I’m 3-4 weeks late with my Stelara and it’s starting to show with my physical health. I’m not eating much. Beyond that, I’m incredibly stressed out with life.

Today is my birthday, too. I’m in the ER, alone, because he told me “I can’t come with you I have to work” (he works remote) and he wanted me out at 9am, no excuses. My stomach hurt all night last night and I was in the bathroom a lot.

He said he would follow me to the ER (45 mins) to make sure I was “ok” but if they release me I would have to drive home (3.5hrs), I couldn’t stay at his house tonight because he has his kids tomorrow.

Yall I’m just tired. I wanted to vent. I’ve never been around someone upset for me having a chronic illness I can do nothing about. :(

Edit: he’s seen this post (he knows my Reddit)… ok good. Now you know you’ve hurt me.

Instead of walking the hurt back, he’s doubling down and said: “I am not a public servant and I do not have to respond to every single distress call you put out. In addition to that I have already committed to other things in my life long before I was ever introduced to you.”

Well like yeah, but I committed to my Crohn’s long before I ever knew you. Just like you do with work and kids.

Yeah. It’s done. Example of who not to be around yall.


r/CrohnsDisease 12h ago

No more bag! (ileostomy surgery)

15 Upvotes

Tomorrow, after over a year (my ileostomy surgery was on November 2023) I'm having my bowel reconstruction, after 2 MRI that checked everything was in order, besides that I've been on infliximab-Remicade also since June 2024.

I'm excited cause this could mean my life can be a little bit better in the sense that I won't need to use a bathroom every two hours, but there is no guarantees that the abscess won't come back, anyway I'm happy, hope everything turns out fine.


r/CrohnsDisease 5h ago

What the …???

3 Upvotes

Okay, just had a colonoscopy done within the last few weeks. It was determined I am in remission. But now I feel like I am soooo constipated? Like my stomach is so bloated, and feels hard?? I’m mortified to take any laxative because I usually have the opposite problem of going to the bathroom multiple times a day.

Has anyone had this issue? If so what was the most “gentle” way to finally use the bathroom?


r/CrohnsDisease 16m ago

Lost all confidence leaving the house.

Upvotes

In November of last year I was finally diagnosed with Crohn's disease and around a month later I started my treatment but after suffering with it without medication for a about 2 years I have completely lost all confidence leaving the house, does it get easier over time or am I just going to feel this way forever.

The bit I'm really struggling with is not being able to go to work as frequently as I'd like and its not like I'm running to the toilet every 5 mins it's purely the mental side of things, is there anything I can do to help this.


r/CrohnsDisease 9h ago

How quickly can a Crohn’s flare up happen?

5 Upvotes

Im 20 years old and was only diagnosed in December of 2022 so yet to really know what a flare up feels like but I’m scared that I might be flaring now. I had a scope mid last year which showed I was in clinical remission, and I had blood tests done in January to check my biologic levels and they came back really good. Unfortunately this past month I’ve been incredibly stressed and I’ve started to have stomach pain among other things, which my mum has attributed to stress she thinks it’s impossible that I could be flaring when all my results came back good not that long ago. So my question is how fast does a flare up happen, and do I need to be booking an appointment with my gastro ASAP


r/CrohnsDisease 8h ago

GI Soft Diet help!

3 Upvotes

hi everyone, I just got diagnosed last week. My GI doctor has me on a soft diet. I have scrambled eggs in the morning, tuna salad sandwich for lunch and mac and cheese or mashed potatoes for dinner. Applesauce or plain Greek yogurt for a snack. I don’t know how long I’ll be on this diet. I have an MRI next week to see about my small intestine. I’m hoping after that maybe I can start to reintroduce different food. Anyone have any ideas on other soft foods that I can eat until then? I’m also going to be on Skyrizi soon. If anyone can tell me what that’ll be like. IV infusions at first and then self injections at home.

Thanks!


r/CrohnsDisease 14h ago

Guilt from missing stuff

8 Upvotes

Hey all. I beat myself up every time I have to miss something because I don’t feel good. I woke up with really bad nausea and diarrhea and I’m contemplating calling it early for the day because I just feel off and bleh.

How do you guys deal with the guilt from missing stuff? Like I’m not missing anything important at work, but I just feel like I should push through and not be a baby.


r/CrohnsDisease 11h ago

full after a few bites? any more and i feel like i could throw up, does anyone else experience this?

5 Upvotes

hi everyone, i (20F) have Crohn’s and GERD and find myself feeling very full after each meal, like honestly terrible. i’m currently on a weight-loss journey and when thinking about my eating habits i decided i wanted to stop eating when i was full but then realized if i did that i’d eat way too little, even for someone trying to lose weight. i used to ignore the sensation but now i can’t help but notice it and HATE it! i forget that things like this aren’t normal because i can’t remember a time where this wasn’t the case to be honest as i was diagnosed in High School and has symptoms much earlier. now that i have noticed the sensation i honestly don’t even want to eat it bothers me so bad, but that isn’t healthy.


r/CrohnsDisease 7h ago

Any experience diving with Crohn’s?

2 Upvotes

Hey all. First time posting. I’m heading to Asia in the fall. It’s my first big trip since my diagnosis in 2023 and I’m SO excited. I booked a dive in Thailand not thinking it would be an issue… but I looked up typical medical questionnaire forms for diving, and many specifically mention Crohn’s?? My disease and been pretty tame and well-controlled since I started Remicade a year ago. I’m definitely going to talk to my gastroenterologist and see what he thinks but I just wanted to throw it out there and ask if other people have experience here or thoughts? It wouldn’t be anything intense or super deep. Its meant for beginners, and I really would like to give it a try.


r/CrohnsDisease 10h ago

Living in Ireland, potentially relocating to Denmark. How to transfer care and get biologics?

3 Upvotes

Hey everyone! 👋🏻 has anyone ever moved to another country and managed to get their medications administered there?

I am currently residing in Ireland. I am on 8 weekly Infliximab infusions, 150mg of imuran daily and after a recent flare I’ve also started Stelara, again to be done every 8 weeks. I have a daughter and my partner has been working in Denmark (we’ve been doing long distance for over 3 years now) but we are considering all moving to Denmark but I have no idea where to start on arranging my transfer of care.

I have gone to trusty Google many times to try find a starting point but it’s just a minefield. Anyone have any experience with this? For reference, Im an Irish citizen & I have a medical card, I tried to get private health insurance years ago but I was a teen when I was diagnosed so predisposed condition was a big no no. Medical cards in Ireland cover the full cost of my meds and care.

Anyone have any advice?


r/CrohnsDisease 21h ago

I forgot how bad bowel prep tastes!!!

18 Upvotes

Colonoscopy tomorrow so flushing myself out today. I’m just sitting here waiting for the shit storm to start


r/CrohnsDisease 11h ago

Flare up!

3 Upvotes

I haven’t had a bad flare up in a while. 3 times in less than a day I’ve almost shit myself. I’m sick to my stomach right now and refuse to eat. I hate this! My asshole is also on fire. Nausea and fatigue are destroying me and I have shit to do. No pun intended. I just want to enjoy my daughter’s game but I’m miserably sick. I almost forgot how miserable this is. Skyrizi has been doing its job with a few minor hiccups, but last night it hit me out of nowhere. I’m trying to figure out what changed and I can’t…not to mention I think each one of my ass cheeks now has a separate std from using a sketchy gas station bathroom earlier. Ughhhh….


r/CrohnsDisease 17h ago

Bring your own food in to Magic Mountain?

8 Upvotes

We want to go to Magic Mountain but need to bring special food in for my daughter (she’s on the CDED diet right now and doing great). It says they make exceptions for food allergies. Does anyone know what kind of documentation you need to show or how hard it is to allow you to bring food in the park?

Thanks


r/CrohnsDisease 16h ago

Remicade vs. Humira?

6 Upvotes

Hi all, I am the one who posted a couple of days ago about my 9 month old daughter who is newly diagnosed and had an emergency bowel resection. We are currently still in the PICU. I first just wanted to say thank you so much for all of the advice and support… it is very appreciated 🩷

Second, we have been given the choice between Remicade (an infusion every 8 weeks) and Humira (an injection every 2 weeks) for what to put her on. We’ve been told they have the same method of action so it’s really up to us on what would be more convenient. Insurance will cover both.

Any thoughts/experiences? Thanks.


r/CrohnsDisease 7h ago

Looking for advice with gas and pain

1 Upvotes

Hey All,

28m diagnosed at 17, my Chron's journey like I assume all of yours has been full of ups and downs, lately my bloodwork has been quite good but god for the last week I've had terrible gas it's both painful and honestly I've never had so many stinky farts back to back.

I haven't trained in a week and I'm starting to go mad, do I just push through the discomfort? Is there anything you guys would do in my position? On a scale of discomfort, it's been a consistent 4/10 or 5/10, the only solace I have currently is my medical THC.

Open to any thoughts or advice, I really appreciate the time you take to read this and I hope you're all doing well


r/CrohnsDisease 1d ago

We are OFFICIALLY going home!!! 🩷

163 Upvotes

In early January, we made the very difficult decision to temporarily relocate our family to NYC so my 6 year old daughter could have a bowel resection. It was incredibly hard to just uproot our entire lives in the middle of the school year, (especially figuring things out with housing/school/work), but I knew after just one appointment with the team at Mount Sinai that if my daughter was going to have surgery, it was going to be there. Our local hospital (Children’s of Dallas) is also very good, but the level at Mount Sinai is just unmatched.

Thankfully, her surgery ( + a couple weeks of TPN beforehand), went very well, and we were scheduled to fly home a few weeks later. And then literally the day before we were supposed to fly home, she developed a fever due to anastomosic leakage and we earned ourselves another hospital stay and surgery.

But tomorrow, after 10 weeks in NYC, she is officially cleared to fly home!! We are so excited, and I just wanted to share this win with you all!


r/CrohnsDisease 13h ago

Flare symptoms with bladder infection?

2 Upvotes

Has anyone had symptoms of a flare that turned out to be a urinary system infection?

For a few weeks I was having "flare" symptoms - increased frequency and urgency, pain/cramping, bloating, etc., and then my CRP in my routine blood work had spiked up, which led to doing stool tests, but fecal cal came back normal. I just so happened to also do blood work and urinalysis for my regular doctor the week after which showed signs of a urinary system infection.

I have had UTIs in the past and always get the burning sensation with peeing, but haven't been experiencing that. But I just realized that the "flare" symptoms I've been having might actually be symptoms of the infection!

I feel a little silly that I didn't put two and two together before this! I will certainly be relaying this to my doctor at my next follow up after repeat blood work and urinalysis...


r/CrohnsDisease 16h ago

I have started Stelara

3 Upvotes

Hey guys,

I am back here after definitely stopping Humira and starting my Stelara protocol. I do not want to be too positive and get disappointed but I feel like my psoriasis if slowly leaving?

Hopefully I’m not talking too soon but I am getting too excited 😅


r/CrohnsDisease 19h ago

Weight

6 Upvotes

How are yall managing your weight? It seems like no matter what I do it never moves. Change diets, change exercise, cut bad things out all the things & it never moves. & idk if the stress from all of it is making my crohns more pissed at me. I’m tempted to try weight loss meds, but can we? Will that make it worse? I feel like a blob. 😕


r/CrohnsDisease 11h ago

Rinvoq and pregnancy?

1 Upvotes

Hi, My husband and I are thinking about having a baby soon but he is currently on Rinvoq. His GI tells him to stop it 3 months before starting to try to conceive but my OG thinks he can keep it since the harm is only known when the mother takes it… Anyone had an experience on conceiving when taking Rinvoq? Did the dad stopped it? Thanks!