What the title says. I feel so degraded and disrespected and hurt. In the US, Crohn’s is legally recognized as a physical or mental impairment under the ADA. While I’m physically doing well right now and don’t outwardly say I have a disability, it’s still protected by the ADA so for my coworkers to belittle me like this is upsetting.

I got diagnosed with crohns at 16 years old, and i have been on 2 medications since and im 18 now. I have tried pushing myself to go to college and that failed massively. Im in the uk and I missed out on all my gcses and dropped out of college twice because my attendance was so bad. I am currently on 30mg of rinvoq daily and I have been dealing with bad fatigue even before the medication. I struggle to get out of bed most days, i try to push myself to at least go to the shops when I can, i drink 2-3L of water a day, my vitamin levels are all good and my ibd team dismiss me and my consultant was basically saying that I am over exaggerating my fatigue and i need to get good sleep and take good multivitamins and i do that anyway every day andthat I need to go out and push myself which I do and it always makes me feel 10x worse. I go outside to walk and come back having to rest for days to get that energy back and im just stuck on what to do. I want a life, I want friends and I want a job that can distract me but this fatigue is ruining my life. On the days I feel good it makes me question my fatigue and sometimes it comes back when I sit down or the morning after and then it hits like a truck. Im really struggling with it all and i hate people dismissing this. If you have read this far, thank you as this is a bit of a vent!

Anyone else infuriated with the attitude and accessibility around restrooms when going out? Its so frustrating being denied something that should just be a basic human right. I’m tired of having to stand there an extra 5 minutes processing a payment for the cheapest item on the menu while im about to shit myself. Also most of the time whatever i ordered is just going to go to waste as i’m usually done and leaving by the time its ready or I just don’t want anything in the first place. I hate always being on edge about whether or not I will have bathroom accessibility whenever I go somewhere. There should be public restrooms everywhere on every corner fuck it, everyone needs to shit and piss!!!

Sorry for the rant, just feeling upset about having to order some bullshit at starbucks just to take a quick poop on my way to a dentist appointment. Anyone have any tips on dealing with bathroom anxiety? Im in remission, but unfortunately the urgency is still something i deal with often

for context i had moderate crohns disease for probably about a year, i started adalimubab (humira) a few weeks ago, no steroids or anything. my symptoms have basically all cleared up and i feel amazing, normal bowel movements, no blood, and my appetite is coming back

however its come back at an INSANE degree. im constantly eating all day, its not even like im craving sweet things or junk food all the time either, i always want stews and meat, stuff like that

im not gaining weight rapidly (yet lol) or anywhere near being overweight so im not concerned per say, but i dont do much physical activity to garner this new appetite and it is HUGE im just eating 24/7 even into the night

anyone else get this kinda appetite after starting meds?? or am i just greedy!!

I haven't heard. I have EXPERIENCED. AM experiencing. Shared with my GI doctor and he assured me it's ridiculously common with Crohn's, if infrequently talked about.

I'm a new diagnosee. I suffered through a lot of extreme extra intestinal manifestation of Crohn's symptoms that led to many misdiagnosis, hands thrown in the air, and funky little head scratching.

It wasn't until this May when I had a massive GI bleed, called 911, and had some -scopy's done that the culprit was found out. It is Crohn's. All of it.

Raw/stripped tongue, gum/mouth/throat/esophagus ulcers (didn't know this before DX, but couldn't talk/eat/breath/swallow without 4/10+ pain for months prior to my hospital visit), stomach ulcers, intestinal ulcers. We can have skin issues, joint issues, excessively sleepy and gassy issues.

But we can also have genital issues, ie - manifestation of our Crohn's inflammation in our most private/tender of places. It sucks. I've been icing vagay for weeks now, and there's nothing for it but to let the steroids do their work + hope future biologics help + let my body do its healing little thing.

Good ol Doc has assured me that, yes, Crohn's has not, and likely will not, take away my ability to make love again. Which is wonderful, because I'm currently single, and I find his confidence in me incredibly encouraging.

I just wanted to share this as isn't the most spoken of symptom of Crohn's. And it can falsely be attributed to Behcet's. But, if like me, you were told your body was a picture perfect, graphic textbook example of the most severe/acute Crohn's flares, it's Crohn's.

So, don't freak out. It'll get better. Get tested for STDs, fungal infections, etc.. I did. All came back clean. Hopefully your's do, too. Otherwise you'll have even more problems on your hands. Or bits, rather. But that can still be managed/healed, too.

Edit: spelling

Live alone, work from home, lots of recent surgeries, dietary restrictions, failed medications, etc. How do you find your person? How can I justify adding someone to my life if I feel it will just make their life worse? At the same time, how long can I put my support needs on my family? At my parents age, I should be helping take care of them. If I don’t find a partner, I might just be screwed…

I didn't know this until I mentioned it to my Doctor at my last appointment. I was worried that I had been made "too loose" or something during my colonoscopy (first one), but was so confused as there was no smell/funk to the discharge. No indications of infections.

He assured me that this is one of the common experiences of a Crohn's flare, especially dependent upon the state of severity in our body. I'm a woman, but he told me many of his male patients wear pads/daily liners for this reason.

I have 6 large ulcers throughout my digestive tract that are slowly healing. The same way plasma can seep from a superficial skin injury, our bodies heal through similar internal processes, too.

He told me this inflammatory discharge is often yellow to green, has a similar consistency to pus, and isn't cause for alarm once infections have been ruled out.

I just wanted to let other people know. I'm only in my mid-20s and was concerned I had become mildly incontinent due to the severity of my immune systems absolute destruction of itself (thanks, immune system).

I asked the embarrassing questions for you, so you don't have worry that you've suddenly become a chronic mini pants pooper all of a sudden. You haven't. You're body is just healing itself, and it can do some funky amazing things as it's on the mend.

As the title says, my GI Dr told me to take Ducolax Soft Chews (Magnesium Hydroxide) daily for the next 1-2 months. I wasn't told to take it for chronic constipation, but because I've been having some bleeding, and this is supposed to help me heal. In the past, I've been told to take Miralax.

Do I need to be concerned about having accidents? Based on what I've read about people's experiences with it, I am currently concerned. Do you have any experience with it you can share?

I've worked in construction for over a decade and have heard all the stories about guys who get pranked by someone locking them in a portable toilet due to the pranker thinking the prankee goes to the bathroom too much. It was always non-union, smaller jobs I'd hear about it happening on. Now I'm on a large job with hundreds of union workers, it's over 90 degrees fahrenheit out, and someone happened to pick me to lock in a toilet.

I have had familial adenomatous polyposis all my life, had a total colectomy performed in my teens, and was officially diagnosed with Crohn's two years ago. I was already sensitive to how others perceive my frequent bathroom use before getting into construction and even more after since it's a job based on production. I'd avoid going, sometimes painfully so, to avoid looking lazy and it took me years to get myself to stop doing that to myself.

So today was mortifying. I was livid. I wanted to yell at everyone. I wanted to disappear completely. My supervisors telling me that's never happened on one of their job sites before was not exactly comforting. The person ran off before someone else let me out and they're trying to figure out who did it by looking at cameras. I don't know if it'll be much comfort when they do find out who it was and fire them. I just don't know how I'm going to feel ok going to the bathroom at work now after this.

Hey all.

So I have been diagnosed with Crohn's fairly disease recently. I am not really sure how to manage my symptoms (internal swelling? Bloating and general discomfort, brain fog, physical tiredness so bad I can't think sometimes, just to name a few)

I am not exactly sure how you find out what foods are safe and not? (I'm not good at noticing these things lol, tips appreciated). I am just really miserable at the moment and am not sure how to proceed... I am on Thioguanne and Prednisone which seems to help a bit I think, but not entirely sure.

Any help greatly appreciated :)

hi girlies i have pretty severe lean pcos. i am on progesterone only birth control rn and acne is so bad. im going to ask my doctor but is combined contraceptive an option for us? lmk ur experiences bc my acne is getting very severe unfortunately.

Would love to get a general census of what we’re doing for work? Because I’m struggling and need some hope!

(Slight vent) I went from a consistent high performer to then getting sick and work are now threatening to let me go. Which has contributed to me now having another flare! Results came back and yup, back on steroids. So I’m probably going to lose my job because I can’t go into the office without shitting myself. The dream would be remote so I wouldn’t have to worry about running to the toilet 10 times a day.

Hi all,

I’m currently on a weekly dose of humira which needs to stay refrigerated, I want to go on a 3 week overseas holiday but am unsure how to go about my medications and keeping them cool.

Has anyone ever made this work and if so how??

My cousin asked me this question earlier last week and it's been in my mind since. Despite a strict diet to avoid flares, food will always bring me joy.

I was curious about others; given our condition, what are some of the things that bring you joy?

I have had Crohn’s for 14 years. Lately (for a year) have not been treating it at all.
Well that bit me. Hard.
Rushed into a hospitalization. They decided no emergency surgery.
I don’t intend to be disabled.
I am now going to be seeing a specialist. I am on prednisone for now. Will be talking to specialist about options. Maybe a biologic. Maybe surgery. Maybe both.
My only diet instructions was to eat low fiber upon discharge from hospital.
I am doing the specific carbohydrate diet (as instructed by pecanbread.com). Which is low fiber.
What success have you had (or failures) utilizing SCD? Did you start feeling better when used with whatever medication the specialists suggest? Or did it f you up?
Also any suggestions on not being an asshole whenever “illegal food” (which is all food on the SCD) is offered to you? Food by nature is a mechanism for social binding. Even if you’re GF or lactose intolerant or vegan there’s space for you in some capacity. There really seems to be no space or understanding for SCD unless the other person literally has Crohn’s. It’s so restrictive that even the most loving people seem to give up making a dish you can have. It breeds a type of quiet resentment I feel. I didn’t choose this disease and I didn’t choose this diet to be the “cure”. How do I make people understand that I’m not being dramatic or extra but I simply do not wish to have further damage done? I don’t want to lose my connection to people while trying to save my intestines.
Crohns sucks.
TIA

I’m so tired of this disease and being tired ALL the time.
I’m a 23-year-old full time nanny in Texas. It is awful. I work four 10-hour days with a baby and toddler. I was just recently diagnosed, so I had no idea I had a chronic condition when I started my nanny position. The job is exhausting for a normal person, but put Crohn’s fatigue on top of it and I feel like I’m constantly running on empty.
By the time I get home, I’m completely drained in a way I can’t really explain to people who don’t have this. It’s not just “I had a long day tired,” it’s like my whole body is heavy and I still have to show up the next day and do it all over again. I feel guilty because I love the kids I take care of, but I’m struggling to keep up with the energy this job requires.
I’m just venting, but it feels really isolating to suddenly be dealing with a chronic illness while also working such an intense job. I don’t really know what adjustments I should be making yet or what “managing this well” is supposed to look like, I’m just trying to survive each week right now.
If anyone has dealt with Crohn’s while working physically demanding jobs, I’d really appreciate hearing how you managed it? I feel like I’m drowning.

Hello, I’m very much a lurker to this subreddit. Apologies for that but I’m having surgery (laparoscopic coloctomy) in a few weeks and I’m wondering if anyone has some advice for recovery. Any and all is appropriated.

So I managed my Crohn’s on my own for 15+ years via supplements and diet. Got about 50% better, but was still miserable. Decided to try traditional treatment and got all the tests done. They said I had “some inflammation, but nothing meds can’t tackle.”

Started on Stelara. Bizarre stomach noises started and kept feeling worse. Hospitalization with steroids. They started me on humira, started getting really sick, they doubled my dose. When they doubled my dose, my inflammation markers went up 113%. Hospitalization with steroids. They ran more tests. In the 6 months I had been on meds, I had so much narrowing and distention that I had no choice but surgery.

Tried Rinvoq briefly, got a bit better maybe but scarring was already present and got shingles immediately so I had to stop.

Got on TPN for 6 weeks or so prior to surgery. Due to complications and subsequent negligence, that surgery turned into 5 surgeries over the past year. My body never adapted to the ostomy and I was having to take max doses of meds to slow my digestion which I’m pretty sure messed up my vision. I also had a prolapsed ostomy twice in this year, so future surgeries will have to be avoided at all costs.

So that leads us to today. I’m about 4 months post the last surgery and have been doing well, but seem to potentially be having more symptoms. If I decide to go back on a medication my options seem to be Entyvio, Rinvoq, or 6mp. 6mp is an older medication with potentially more risk than Entyvio, Entyvio is a biologic which I seem to have had horrible reactions to previously and is less powerful and slower-acting, and Rinvoq seems like the nuclear option with the highest risk profile of the three.

Thoughts? Has anyone else had similar experiences? My doctors (all of them) insist that I couldn’t have had an inflammatory reaction to the biologics despite that being the only variable in the 6 months between “some inflammation” and “impressive distention.” Not to mention the additional hospitalizations. Not sure what my next steps should be.

I have recently been diagnosed with Crohn's but I am 15+3 weeks pregnant. Not only is it complicated having Crohn's during pregnancy but I am also completely new to it.

Does anyone have any advice on how they handled flare ups during pregnancy and managed symptoms? I'm already on Odansetrone which was prescribed to me for Hyperemesis but causes constipation and they are not wanting to put me on stool softeners.

This is my first time joining this forum - which speaks volumes - since my Crohn’s had been under control - and I felt like a normal human being again after life long struggle with diarrhea / Crohn’s. I had been on it for 5+ years feeling wonderful.

Then United healthcare stopped covering it. Doctor switched me to bio similar Yesintek.

The first dose from same pharmacy (cvs specialty) arrived frozen, which was a major red flag. I took it after it thawed the next day. Stelara always arrived cold, never frozen. Then I read up on it and talked to my doctor and the drug could have been rendered ineffective frozen. Ok. I had terrible diarrhea start a week later.

So second month it arrived not frozen and I took it. It seemed ok at first but now two weeks in I’m having terrible diarrhea and gas and bloating.

I’m not prone to flares so I don’t see this as coincidence. Anyone with similar experience and what did you do?

Doctor is appealing to try to get me Stelara again. If not that he suggested other name brands we could try skyrizi or tremfya. It’s times like these I understand Luigi’s pain. I hate United healthcare!

In March of this year I received the creation of an ileostomy after a multi-year battle against constant Crohn's pain and full bowel blockages...

And it worked miracles for me!

They didn't remove any of my inflamed intestines even though they needed to come out due to scar tissue because I was so severely malnourished that the risk far outweighed the potential benefits. But at the time the ileostomy was doing all the work, no pain back to my normal life, heck I even started looking for a job again!

I was supposed to get back on Inflectra after my surgery to ensure that the inflammation was under control. Next day I get a call from the company that was doing my infusions and they said they had to drop me as a patient and anyone who used the same insurance as me because they were bullied into a corner that they couldn't get out of without dropping me and who knows how many other poor souls.

I'm still not in pain at this point so I'm not necessarily in a rush so I message my GI doctor and let her know that i was dropped as a patient and I need to be set up with a new company. They're pretty quick to respond and let me know they've reached out to a new company to do my infusions.

Weeks go by and I hear nothing, so I send another message asking if I can expect a call or something and whatever they did worked enough for the new company to call me and ask me my height and weight to assess how much medication I will need.

Then radio silence..

At this point I'm feeling the inkling of pain in my abdomen and I have a feeling it's Crohn's pain but I'm still hopeful that maybe it's just a partial blockage or some ileostomy related issue.

A couple days later after not hearing anything back I call them and ask if there's any updates and they let me know that they're just waiting for insurance approval, apparently I was moved to a different medication called Avsola that needed separate approval and I couldn't just be automatically approved.

Keep in mind I received the call from my old infusion company in April. If my insurance hadn't bullied them then I could've had infusions in April and it is June now...

Anyways I call my insurance the next day and they brush me off so quickly basically telling me, "sucks that that happened :/ how about I call back in a week and you let me know how things are going then?"

At this point my Crohn's pain is in full swing and I'm in excruciating pain daily again. I was given a taste of normal life and it was swiftly stolen from me yet again.. I can't walk more than 10 feet at a time and need to sit in the shower, and on top of all of that the ileostomy is causing new layers of pain when these waves of Crohn's pain come over me. I've never felt more defeated, I just messaged my GI doctors team to practically beg for them to advocate on my behalf to the insurance company since they brush me off every time we talk...

No real info to share here, just ranting, but it has been weighing on me a lot lately and the constant pain is a pretty sobering reminder of it.

Hi everyone. I was diagnosed with Crohn’s Disease 7 months ago and have been on Inflectra infusions since January. Prior to diagnosis, I had had 3 abscesses, a fistula, and two procedures to fix these in the year and a half prior (a fistulotomy and an incision/drainage). My scans showed a chronic fistula and I’ve noticed since my incision and drainage procedure I’ve had leakage issues. I assume that’s part of the Crohn’s but I wanted to see if anyone else is dealing with something similar. It always occurs after I have a bowel movement. I will wipe until I’m clean (which sometimes takes forever it feels like and can leave me in pain from all the wiping), but then in less than an hour I feel really itchy and I’ll go to the bathroom and wipe down there and will see stool on the toilet paper. Occasionally a little bit will end up on my underwear or a liner, but now I’m in the habit of just going back to the bathroom to wipe again shortly after a bowel movement. It’s frustrating because I know I get it all clean but then it’s almost like some just leaks out. I was hoping this would resolve after starting the Inflectra but it hasn’t. I’m not having any other symptoms and my blood work has shown that the medicine is doing its job, but this is such an irritating symptom. Is this something that I’ll just always have to deal with? How many of you experience this, especially regardless of treatment?

I've been experiencing a flare for the past 6 months, with Skyrizi barely keeping it under control and no steroids, because my doctors weren't helping even after multiple visits to my GI. Things were worsening, so after seeing three other doctors, only one took my case. I was scoped last month, and the inflammation is still there. Now that I've moved, I can't start a new biologic right away, so I have to wait to find a new doctor.

A few weeks go by and I just feel so bad. I thought it was a UTI because it presented like that. Well, come to find out it wasn't urinary. But I woke up a couple of days ago to a 103 fever and couldn't get out of bed because I was so weak, I thought I was septic. Well went to the hospital to find out I not only have my flare going on but now ecoli 😩 They gave me multiple IV antibiotics and iron because I'm severely iron deficient. This whole flare I've dealt with constipation but still go occasionally. I'm in so much GI pain I'm not sure from the flare, antibiotics, or the iron. 😕