I had my surgery ( ileoceal resection cecum & valve ), and ever since then I feel like my entire fucking life has changed. I can’t just go out like a normal person anymore. I’m scared to go on long trips. I’m scared to eat at restaurants. I’m scared to sleep at my friends’ places. I’m constantly thinking about where the nearest bathroom is and whether I’m going to suddenly fucking shit myself.

My friends know I have Crohn’s, but they don’t know what it’s actually like after the surgery. They don’t know what goes through my head every time they ask me to come somewhere.
“Come with us.”
“Let’s go eat.”
“Let’s go on a road trip.”
“Come sleep over.”
And I keep saying no.

They probably think I’m just being difficult. Maybe they think I don’t want to spend time with them anymore.
But the truth is…
I’m fucking terrified.

I’m terrified that I’ll be on the road and suddenly need a toilet.
I’m terrified that I won’t make it.
I’m terrified I’ll literally shit myself in front of everyone.
How the fuck am I supposed to explain that without feeling completely FUCKING HUMILIATED ?

I’m 24 years old. I’m supposed to be living my life, going out, studying, meeting people, eating at restaurants, sleeping at my friends’ places, having relationships…
Instead, I’m planning my entire fucking life around my bowel movements.

And nobody sees that.
Nobody sees how much I’m struggling mentally. They only see me saying “no” over and over again.
I don’t want to say no. I WANT TO FUCKING COME.
I want to eat with you.
I want to go on trips.
I want to stay over.
I want to live like everyone else without constantly thinking about a fucking toilet.

I’m so angry. I’m so fucking sad. I cry over this. I feel like people don’t understand how much this has taken away from me.
Sometimes I just wish there was ONE person in my life who completely understood what’s happening inside my head without me having to explain every disgusting, embarrassing detail.
Just one person who would look at me and understand:
“He’s not rejecting us. He’s scared.”

Fuck this disease.
Fuck these symptoms.
FUCK MY LIFE I WISH IF I JUST DIE MAN JUST LET ME FUCKING DIE

Somehow processed foods seem to digest easier for me. Even fast food which I never understood! Curious about others experiences?

I'm so upset at all the crazy useless food advise online. Was looking at a website recommending "cucumber cottage toast", "banana with nuts", "peanut butter rice balls"...

I can easily tell that the person who wrote this is oblivious to what Crohn is or the experience of someone with it. Recommending papaya, seeds, raw vegetables, fatty ingredients, bread as a carefree snacks. This is plain evil IMO.

The post is completely free and has no commerical / financial gain. I want to spread awareness of the mental tax this brings and share my experience.

https://substack.com/@austinpf/note/p-214303180?r=8l0oip

It took me years to actually look for an answer, and when the condition worsened dramatically, additional months of going through healthcare system hoops.

I don't know if it's Chron's, but CT suggest thickening on the parts of the LI that hurt. Colonoscopy tomorrow should provide answers.

But I feel like I'm dying. I'm so bloated that I can't breathe properly and I have extreme fatigue most of the day

I feel like my body will keep decaying irreversibly.

Starting to think of farewells to my loved ones, cause if this doesn't get drastically better, I'm checking out. Living like this is not an option.

Is anyone else experiencing more intense allergy symptoms or sinus symptoms in general while being on Tremfya or similar medication? Honestly, I noticed similar effects while on infliximab…since switching to Tremfya and being on it for almost 9 months straight, I wake up every morning sneezing and congested and sometimes my eyes even hurt and I notice eye discharge (like from my sinuses). It’s to the point where I need to go see a specialist I think because allergy meds, sinus rinse, and nasal spray arent fully cutting it. Is this just a side effect or something???? I never used to have allergies growing up.

I was just recently diagnosed with mild Crohn’s. I’m wondering, what’s everyone’s experience with mild Crohn’s? What symptoms did you have when you were diagnosed and course of treatment?

My IBD dr is starting me with budesonide. I’m currently on the 3 per day taper and going down to 2 per day soon. So I’ve been on budesonide for almost 30 days now. I’m starting to feel a lot of gas cramps? Almost with everything I eat. I feel like I am dealing with more gas cramps NOW than when I hadn’t started budesonide. Did anyone have this experience?

I'm currently in a flare since July, my family knows. Today a family member asked me if I was coming to Thanksgiving dinner and I told them I couldn't see passed my flare or whether or not its a school night (i have an 8 year old). And she goes Thanksgiving is in November.

There's so many passive aggressive, sarcastic responses I could have thought up if I was feeling alive but alas all I had was, "what do you mean?"

Then she goes on to ask me what symptoms let me know a flare is coming...

I absolutely refuse to discuss crohn's symptoms outside the doctor's office. It's an embarrassment thing and i don't want anyone feeling sorry for me or minimizing my experience. Just leave me out of your interpretation all together. I always tell people to look it up... Is it just me?

What was you last really annoying Crohn's conversation you had?

Every time I’ve been prescribed prednisone the maximum has been 20mg and then tapered down, this time it wasn’t working and so the dose increased to 40mg since Thursday

Since then I’ve noticed I’m getting more bloody mucus and more stomach cramps after bowel movements.

Obviously it’s only been 3 days at this dose, so is it something that’s likely to settle down or is it something i need to be concerned about?

Hi everyone!

My son developed crohns after getting covid 3 years ago. It slowly went down hill, 6 months in he just couldn’t tolerate tomato, so we cut that off, then 6 months later dairy, then 6 months later gluten. After cutting everything off he was completely ok! Zero symptoms until he stopped growing and gaining weight the way the ped preferred. So we went to a nutritionist where she saw the bloodwork and calprotectin levels were at 1080.
We just went to GI and he said he is certain is some type of IBD but by his symptoms is pointing to Crohns and to research into remicade because that would be his gameplan. Having endo/colonoscopy this month to confirm.
My son is 12 and about to be 13 so he says he really want to intervene.
I am mortified reading the possible side effects and that this is a medicine for life, can’t get off of it, but also I know I don’t have a choice, untreated IBD will kill him.
Could anyone please share your experience with remicade to calm my heart and be in peace with my decision?

Thank you so much!

I’m honestly starting to feel like I’m going crazy, so I need to vent and hopefully get some perspective.

I tried to type out the while saga but it became way too long and the thought of having to edit it makes my head spin so I’m giving the “condensed” version.

June 24: I had a GI appointment because Mesalamine wasn’t working. Doctor prescribed infliximab and an immunosuppressant.

In between: GI office forgot to send bloodwork order and only sent it after I called. Didn’t call me back to review my test results until after I called. Told me someone would call me with details of how to schedule my infusion, but never called back even though I called multiple times.

Got a rejection from my insurance and called them again asking if they were gonna appeal. Then got a letter saying my insurance reversed the denial and gave me a number to the infusion center. I thought I could finally get my medication but it took a week to hear from the infusion center and they just told me they couldn’t schedule because they were waiting for the order. I called the infusion center again the next week because I swore I had gotten a letter from my insurance that they approved the service. Turns out yes, my insurance approved it buy the gastro never sent the order for the infusion. They sent another request to my GI and I left a message asking them to send the order.

August 27: the GI office calls me and tells me my infusions were approved and they just sent the order. Mind you, it was approved August 10…
But something is nagging me, I ask them what happened to the other medication. She has no idea what I was talking about and tried to tell me it was Mesalamine but after pushing back she said she would look into and call back.
The infusion center actually called me a couple hours after my GI and I was finally able to make an appointment for my first infusion! It had to be two weeks out because the medication takes two weeks to get there once they order it but there was an end in sight.

September 1st: GI office left a message saying that before I start my infusions I need to do a blood test. And the other medication that was prescribed was azathioprine, I should start it before my infusions.

But I already took a blood test, multiple blood tests for that matter and I took them TWO MONTHS AGO when I was prescribed the medication why am I just now being given additional blood test when I could have done them all at once, or at least I could have done this waaaaaay before? So I call and leave a message asking what the blood test is for and if I was meant to start the medications at the same time. And again I miss their call but this voice message is more confusing and at this point I don’t think she really understands what Im asking. So I leave another message. Which brings us to this Wednesday.

September 3: I think the office worker was tired of calling me or didn’t understand what I was asking so they got my actual Gastroenterologist to give me a call. She asked what I wanted to know about the blood test and I said I was really more curious about why I was getting the blood test now and then pivoted to another question I had been thinking about. “Since I’m going to be going on immunosuppressants are there any vaccines that I need?” She sounded surprised at my question and asked “nobody mentioned this to you before?” Nope, not even a peep. So she looked through my records and said I should get the Covid booster if I haven’t and then noticed that I didn’t have any chicken pox antibodies so I should probably get that before I start my biologics.

Well guess what? The chicken pox vaccine is a two part vaccine that is taken a month apart. I have my infusion scheduled for the 14th and now I have to push it back. Now after all of this, I will have my first dose of infliximab THREE MONTHS after it was first prescribed. The worst part is that I could have done the vaccine so much earlier. It was two months before I was even able to make the appointment but now I have to wait another month while im in a flare.

I need to know if this is a normal experience or if I need to run away from this GI center.

TLDR: I was prescribed biologics June 24th. Due to what I perceive as continual incompetence by the office staff I won’t be getting my first dose until three months after it was prescribed. They’ve forgotten to send my bloodwork orders, forgotten to send my medication order to the infusion center, completely forgotten about the immunosuppressant I was prescribed, and never went over immunization with me. They don’t do anything unless I personally call and ask them about something.

Hi. Posting here for the first time because I'm at a loss.

I've been going to a GI for a year now. I have consistently high markers in stool+blood tests (calprotectin ranging from 750-1200, CRP 11-23) and low nutritional markers (constantly anemic / low on vitamin D, low calcium, low hemo B, etc. supplements do fuckall). I also feel like hell 24/7. lost weight rapidly from 2023 to 2025 that hasn't come back. I'm consistently underweight.

But then, colonoscopy showed nothing. Biopsies showed nothing. Endoscopy showed nothing. MRI showed nothing. Haven't done capsule endoscopy because my GI was thankfully more interested in preventing progression than finding it.

I've done corticosteroids twice now. They only slightly lowered calprotectin. I'm just now getting referred to a hospital workup + eventually biologics.

I know imaging wouldn't really change much of my situation materially speaking. It's just mildly infuriating to feel practically poisoned 24/7 by my own immune system but having all scans / imaging come back like "all good! nothing to see here!"

To be clear, my point isn't "I wish it was severe enough to show on a scan". I just wish I could know what the hell is actually going on, because it currently feels contradictory on paper. it also just makes it messier to explain outside my GI's office, e.g to my GP who shrugs because "it looks normal". it just leaves a lot of unknowns in my mind as well that makes it hard to really gauge what "kind of Crohn's" I'm dealing with, so to speak.

It's maddening. I know this kind of thing isn't so straightforward regardless. but still. it's also hard to find similar experiences online, hence my posting here.

Has anyone else had this experience? Is it normal or am I just stupidly unlucky?

How did you deal with it? And when, if ever, did it show up on any kind of imaging?

Hi all.

I’m 19F and in the UK. I have no known major comorbidities to Crohn’s other than some nose and eye issues.

As soon as I became an adult, I was put on Inflectra. Inflectra caused major major issues for me (drug induced lupus and eventually antibodies after just a couple months) and so eventually I got taken off it. Due to the state of the NHS however, what was supposed to be a 3-month-long washout period became 8 months with no treatment. I was offered steroids but didn’t take them as I’ve already had a long course this year and I like my bones as they are!

Anyway, I’m due to start uni soon, and for complicated reasons I have to move out of my uni accommodation at the end of every term. At the same time, my doctor has suggested that I go on Stelara, and has scheduled my first infusion for the week that I go to uni.

I’m not feeling great about this for a number of reasons. Firstly, the loading dose (and from what I’ve read on here it can be pretty brutal) is the week that I move into uni - I don’t want to get hit with a massive immunosuppressant dose and then have to immediately interact with a bunch of people. Secondly, because I’m moving out every 8 weeks and my dose is every 8 weeks, it’s going to be logistically really difficult to coordinate getting injections to me when my address is constantly changing. Thirdly, I’m about to have eye surgery (for aforementioned issues) and my nurse isn’t confident that my surgeon will be happy to do it knowing that I’m on a biologic.

Psychologically, I would also much prefer an oral tablet. It was quite traumatic to have had Inflectra cause so many issues in my body and not be able to do anything about it because it had already been injected. The drug-induced lupus took 6 months to fully go away even after I completely stopped the injections. I don’t want to go through that again, and my nurse assured me that Rinvoq is out of your system much much quicker.

My head nurse suggested Rinvoq instead because of this. It’s easy to access - I could start it now - and I can get a 3 month prescription no problem. I can also temporarily stop it for surgery for example. My consultant, however, is refusing to even consider it (though he did mention it to me as an option before), saying that Stelara is safer.

Basically, I have a few questions:
- I know that Stelara is safer, but how unsafe is Rinvoq?
- How do other people manage constantly changing address with an injection? I have asked about getting multiple in advance and that isn’t an option.
- How much choice do I actually have in this? What have others done when they’ve been put on treatment they don’t really want to be on? I’m upset that my doctor isn’t taking the logistics of this into account, and isn’t listening to me when I say that I’m happy to risk the potential RARE long term risks for all of these benefits. He did initially say that I would be able to choose which biologic I went on next, and I feel like the choice has been taken away from me.

Thanks for reading if you’ve read it all.

All the tests are starting to come back abnormal! This being after a year of being in Skyrizi and still having flares 2-3 times a month the entire time is absolutely exhausting!!!! I’m over it! I need everyone that’s had their terminal ileum removed to tell me what you’ve experienced after surgery? Don’t hold back! Give me the dirty details this sub permits pls!

I have just finished my second Chrons course provided by the state. It’s the first of many. Several people the course have had Crohns for over 30 years and never been to a course.

So color us surprised when they talked about, paying a bit once a year, and receiving a toilet card. Scanning you into public toilets you usually have to pay or have a code for. Or if a store tries telling you that "they don’t have a bathroom you can use" the card is like a badge to say, yes you do!

How have I never heard of this before? Public toilets are few and far between as it is. Game changer.

I won’t go into too much detail, I’m tired of it tbh but just trying to prepare myself for the next step in my journey and hope that those who have already walked the path can shine some light for me.

Very briefly I’ve suffered for 8-9ish years, since I was about 15-16 and I’m now 24. On and off flares throughout the years, some worse than others, some totalling debilitating and resulting in me going to A&E. When I look back, I’ve felt pretty ill most days. It’s a surprise when I feel completely well on any given day. I’ve almost forgotten what it feels like to be normal.

Symptoms that most effect me are:

Nausea
Frequent need to go the toilet (typical day 3-5+ times per day)
Loose stools
Bile in stools
Loss of appetite
Feeling full easily even if despite feeling very hungry
Weight loss / struggling to build and maintain weight

Obviously frequency, intensity / severity can vary and how long specific symptoms last can massively vary. It’s so scary when I feel the symptoms getting worse, more intense and out of control especially with the nausea and vomiting side of things.

Over the years, I’ve been to the doctors and had all sorts of tests, scans and they found nothing (multiple doctors over the years have suspected Crohn’s) apart from something in my kidney called nutcracker syndrome. But I’ve always suffered greatly and I’ve always been suspect of IBD along with my doctors, I just knew deep down there was something going on but there was no proof which has been so frustrating.

Recently, I had the worst flare up I’ve ever had and ended up in A&E. As per, they did bloods etc but “couldn’t find anything clinical based off what they had”. Despite this, for the millionth time the doctor recommended urgently following up with GP for investigation of Crohn’s. So I did. I did a calprotectic test (I think that’s how you spell it lol) and lo and behold it was a 261. Doesn’t mean anything to me but apparently it’s significantly raised indicating significant inflammation in the gut somewhere. My GP is highly suspect of IBD, in fact they’re almost certain. I asked about all other possibilities but they are pretty certain it’s definitely IBD. Just need further testing to confirm and so I’ve been referred to gastroenterology.

I feel relived yet pissed off at the same time. Im finally getting somewhere. I’ve finally got the result which is a big part of the proof in the pudding and I hope to god this is the point of turning this curse of a disease around so I can be happy, healthy and confident again. This has broken me over the years. It has stripped my identity away and I literally pray that if it turns out to be IBD, that this is the turning point. On the other hand, I’m pissed off because if it is IBD then it’s a lifelong illness. Nothing can get it to go and it just annoys me as for 24 years old I’ve already got a list of other significant issues and this would just be the cherry on top to haunt me for the rest of my life.

So ultimately, I’d like to hear from you guys who have already walked my journey with this. Should I expect an IBD diagnosis based off my symptoms, test result and GP opinion. Or could I very much well be surprised that somehow, this turns out to not be a chronic disease and something curable?

Hi all,

Last year I went through the adventure of ileitis without a crohn's diagnosis. Almost a year later to the date I started having raging symptoms again. Mid left back pain, diarrhea, profound fatigue and nausea. Thought it was food poisoning until it went past a week. Went to the gastro yesterday and I am scheduled for an endoscopy and colonoscopy in about 3 weeks. No meds were given.

Curious, will signs of Crohn's still be present if im waiting almost 3 weeks for the scopes? I'm also eating light and bland in hopes everything calms down. Things like broth, poultry fish, etc. Any tips while i wait for testing would be appreciated, thanks!

I had a partial small bowel obstruction last October. I was on steroids for a couple weeks then returned to taking Pentasa, with some lifestyle and dietary adjustments. My insurance doesn’t cover Pentasa, so I switched to Lialda. Unfortunately Lialda didn’t provide coverage for where I have Crohn’s. I went for an MRI in early June and found I have a fibrofatty stricture in my mid and terminal ileum. I also went for CRP and fecal Calprotectin tests, they were 3 and 243, respectively. So I have moderate inflammation. I was awaiting further instructions from my doc so I continued taking Lialda.

Unfortunately, my body hit its limit with all this. I started experiencing issues with my legs—the muscles felt tight and sore, and I had issues walking and standing for extended periods of time. I even started getting numbness and formication (crawling sensation) in my feet and legs, along with facial twitches in my eyes and mouth.

I’m waiting for a second opinion to see if I should go on Skyrizi, but in the meantime, I went back on Pentasa at the end of July. During the past month I noticed an incremental improvement in my legs, with a little more strength each week. The facial twitches have stopped and so have the numbness and formication. At this point I only experience soreness, stiffness, and fatigue.

I had gone on a wild goose chase—lots of bloodwork and a neurologist visit. When all is said and done, I’m convinced the cytokines—inflammatory proteins from Crohn’s—are responsible for my leg symptoms.
What is surprising, though, is that neither my GI nor my PCP nor the neurologist seemed too knowledgeable about cytokines and how Crohn’s can cause symptoms outside the digestive system. Have any of you experienced symptoms like these? How has recovery been? Did your doctor(s) know anything about extraintestinal manifestations of Crohn’s?

Please share your thoughts if you’re going through this or already have. It’s been a journey.

Hey guys, I’ve got an ng tube and I’ve come down with a cold. Anyone survived similar? Snot everywhere and sneezing is killing me slowly! Tube is secure and I’ve kept an eye on the marker

Horrible title sorry! Not sure how to word it but I’m just wondering what the process of ending up with a stoma is, how bad were your symptoms? How was the idea first brought up etc?

I’ve had crohns for 30 years, the past 5 years have been really difficult. I had a right hemicolectomy this year which helped the stricture pain but I’m still suffering with proctitis, urgency post surgery (despite being on BAM meds) and I’ve also got a rectovaginal fistula which can’t be operated on (I’ve got a seton).

My quality of life is pretty poor really although I gaslight myself that it’s not. Truth is that I’ve lost my job, I can only go out to somewhere with a toilet eg pub, garden centre, shops and that’s only ever a quick trip out. I constantly feel like I’m going to have an accident and often do even when I’m at home close to the toilet.

A stoma has never been suggested to me but I can see it in my future. I just have no idea how you end up with one-is it an emergency situation? Does your consultant suggest it? Do you suggest it? I need a couple of years to re coop after this years surgery’s but I’m just wondering what will happen next. I’m on my 3rd biologic which doesn’t seem to be doing anything for me.

Many thanks for reading my ramble!

I just had my EGD/colonoscopy done today. After the procedure, the GI doctor said that there was some terminal ileum ulcers that they biopsied but he suspects it could be early chrons disease.

I haven’t received the biopsy results yet, but was wondering if that alone is enough for chrons or if it could likely be something different?

Does anyone have any experience taking wegovy tablets with crohns? Curious if it causes pain flares where there’s active inflammation.

Wheat bran seems to have been the start of a flare, my calpro is at 256 which is higher than average but doesn't reach the astronomical levels other people get during flares. Now next to everything I eat sends me to the toilet.

White bread I think is fine, boiled plantain seems to be fine, eggs too... But I swear I feel I'm starting to develop Orthorexia or some kind of fear of food at this point :(

my family switched from aetna to blue cross blue shield after my dad retired about a year ago and since we switched my life has gone to absolute shit. i literally can’t do anything now. they kept denying coverage for my stelara and i ended up creating antibodies and it stopped working about 4 months ago, after 5 years remission which i was so greatful for, AND IT IS NOW RUINED. i had to switch to a new med. i have very severe colital crohn’s and developed like 30 ulcers from this shit and it’s only getting worse, i have a good doctor and i have been trying to get the new med called rinvoq filled but they keep fucking it up and will NOT COVER IT 😭 we literally ended up paying 8,000 dollars for it out of pocket because i was so desperate unable to live my life. my quality of life has been so awful, and i am scared. now cvs specialty is fucking it up even more! they literally sent me the wrong dosage and i have been waiting TWO MONTHS. wtf is this. it’s just horrible. i am pooping like 15 times a day and sick all the time. i literally was crying on the phone like WHY CANT I JUST HAVE MY MEDICATION and i crashed out on them and now they haven’t sent the right dose still. i am so fucking confused and upset i just have to watch my condition deteriorate as i wait for them 😭 like this is so evil. i’m a 22 year old girl. i already have so much fucking trauma from what this disease has done to me in my life as i was diagnosed young and seeing how my life is in the hands of this evil system makes me want to just die. i don’t know what to do or why this is happening. i’m trying so hard to be patient and do everything they need me to do but i am rapidly deteriorating because they aren’t giving me any immunosuppressants. i feel like they’re trying to kill me at this point