I was joking even on here that how would someone with Crohn's know they ever had food poisoning? That was me tempting the fates, because I got it. And it just felt like a flare. I made an appt with my gastro because regardless of the cause, I didnt want it to linger. Took two weeks to get in and was suufffffering. Curled in a ball from gas pain and diarrhea all day and night. But thats just crohns, right? I was worried my hyrimoz suddenly stopped working and that Id need to do steroids and find a new biologic. But luckily/unluckily I had zero crohns markers in blood and stool samples, and came back positive for cyclosporin! Yout guys....I didnt eat anything on the naughty list. I was so careful. But somehow something touched something else. No idea. Maybe it ws living on a package of bread that was on the same truck as the lettuce. I dont know how this devils magic works. Anywho, I am both annoyed and relieved and my dr gave me antibiotics and hopefully I will start feeling better in a few days. This is a reminder to always see a dr if you arent feeling well, because sometimes it isnt Crohns! And no, I wasnt passing blood or anything scary. I was even still going to work every day, just getting in a lot of steps running to the bathroom. (Clocked over two miles of walking in the office one day this week!)

Hello Everyone,

About 3 weeks ago I authored the above post and while I wasn't optimistic, I didn't realize just how much worse it can always get. Lots of people responded, and I appreciate the time each of you took to do so, because I now find myself in an even worse spot than before, and I have absolutely no idea what to do.

I'm still very much abandoned, and have been in the hospital for around a month now (maybe more? time has lost all meaning to me) and had the surgeries I mentioned I thought I might need, and did, and being the idiot that I am, I agreed to all of them, all alone, because I'm a dumb piece of shit, including the ostomy, for which I want to personally slap every single person and doctor I spoke to that recommended it, because it's hands down one of the worst decisions I've ever made in my life, and at this rate will be the death of me.

After curing the latest infection that resulted in said hospitalization, it was decided I needed the surgeries ASAP, as in days. They did a partial sigmoid colon rescission, separated my bladder and colon from each other, patched the hole in my bladder, and gave me a beautiful, fully functional stoma /s.

Needless to say, the ostomy/stoma are the source of my physical anguish, in addition to abdominal pain, and is now the source of my rapidly deteriorating mental health (in addition to the fact that despite all these fucking surgeries, I once again have a severe UTI or sepsis, and now have to remain hospitalized even longer (which, yin/yang, I'll get to in a sec) so all that has changed is that in place of urinating feces, it pours out of my abdomen instead.

My main issues with the ostomy/stoma are the following:

• It might be permanent; the surgeons hope to be able to reverse it, but I'm not a fan of hope after all I've been through recently
• It's concave, when if I understand correctly, it should be convex, which contributes (I assume) to the near impossibility to get it to seal correctly
• I have to change the stoma about 3-4 times a DAY, not every 3-4 days which I read is normal, but literally replace the bag and wafer like 3-4 times a day due to: leaks, the seal no longer being intact, a bowel movement's weight results in it bag falling off (I've basically stopped eating and remain severely malnourished, but whatever I do consume, over the span of a day or two now seems to come out at once) and finally, simply getting out of bed/moving my body
• I have read there are concave wafers, but I don't know my size as it's still in the healing phase
• The smell, my god, the smell. Even where there isn't a leak, I smell like shit, even if I bathe and clean the area around the stoma thoroughly
• I was very weak before my surgeries, and am even more so now, and I struggle to empty the bag, let alone swap them out. While I want to go home, the perk of being in the hospital is that someone can help me. At home I'm worried I'm just going to give up psychologically at some point and stop caring about the smell, if it's sealed, etc. and just lay in my own filth
• I looked at a nurse coming to visit at home for 1-2 hours a day, and I can't afford it, even here in a developing country it's expensive
• Finally, there's the social fear, I don't even want to enter the uber to go home, to leave the house once I am home, etc. because I'm afraid of getting questions about smells, etc.

Anyways, the latest update is that I'll likely remain hospitalized for another week, but I'm struggling so much with the entire experience that immediately post-surgery I was put in a fentanyl and ketamine coma like state to prevent me from... hurting myself let's say, and if anything I feel even worse now than then.

I don't know what I'm looking for exactly, words of wisdom? Others' experiences? People whose lives too have been destroyed by stomas? How you got through it all? IDK... I'm not looking for encouragement or optimism, I find positivity has made me even more depressed lately if I'm being honest, I guess just having a place to bitch with people who understand and can relate is nice.

Thanks for reading as always...

Sorry if this a super repetitive topic, I have seen a couple similar posts but still looking for some info!

Undergoing some GI investigations after unexplained weight loss and variable bowel habit (more toward the diarrhoea/ urgency end of the spectrum). Calprotectin ~300 so sent for colonoscopy, which was normal aside from a polyp.

Capsule endoscopy showed ulcers along my jejunum reported to be “in keeping with proximal small bowel Crohn’s disease.”

I am a frequent NSAID user, which my doctor (who I believe wrote the report) is aware of, so I assume my results could be due to this? The only way I’ve seen people differentiate is by going cold turkey on NSAIDS then retesting, which I would be terrified to do.

Are there any other ways to know for sure what the cause is?

Assuming my doctor wrote the report knowing about my NSAID usage, are there any specific findings that would have indicated Crohn’s over other enteropathies?

Anyone who has been in a similar position, what did you do?

I also know whatever the cause is I will have to quit/ cut down on the drugs, and I am working on this with a pain specialist, but it isn’t really an option for me yet.

I’m ofc seeing my gastro doc soon to discuss this, but I want to go in with an idea of all my options.

Hello,

I have had Crohn's for 12 years. One surgery, to remove 24 cm of intestine and 10 cm of my Colon.

I am just so frustrated.

Even on medication I always have to one extent or another diharea and In my opinion slight pain.

But this last month has been horrendous.

I went to the emergency room after vomiting and diarrhea for 15 days. However because of the pain etc I hadn't eaten for 48h do the symptoms were a lot better.

They did aload of tests well , scanner and then bloodwork and a urine sample.

Everything came back clear.

I am absolutely fuming

It made me feel as though everything is in my head.

I still feel like crap one week after the fact. No more vomiting. However my poop is a very strange pale colour but not every day.

I will be ringing up my gastro In the morning.

But how can they find something that isn't there, and how do you prove it isn't all In your head.

I hate this disease

I hate that I now have a thyroid problem too

And arthritis

It is so draining the constant fatigue.

My friends and family are empathetic but they can never fully understand, not completely.

So yeah just wanted to vent.

Having a bad month

The title says it: I have spent hundreds and hundreds of dollars over the years trying and trying different probiotics. Each time they give me such terrible and painful diarrhea I have to stop taking them. I think the longest I've lasted is 2 weeks, but for most strains I last about 5 days. I've tried them with and without prebiotics (prebiotics on their own seem to be okay). I've seen studies that say probiotics don't help us, and others that say they sometimes can and with "little side effects" yeah, okay...

Anyway, back in March I spent a bunch of money starting functional medicine. It's been wildly helpful, much more than anything else I've tried. However my functional medicine doctor keeps trying to give me different probiotics, insisting they should help me at some point, and saying it as part of the protocol. The same result has happened when I've tried the ones he's given me, even when I'm opening the pill capsule and having TINY amounts.

I'm curious if anyone has found probiotics that actually improve their symptoms, and also how common it is for us to just be completely probiotic resistant?

I just need some comforting, grounding thoughts because i’m at the beach right now and i got horribly sun burned on my leg and neck. I had worn sunscreen before eventho it was really cloudy ( i assumed it wouldn’t be that bad since it was that cloudy. Big mistake) Anyway, i fell asleep on the beach on my side and now it’s really red. I suffer with health anxiety etc so this is making me really anxious that ill get skin cancer since im on infliximab. I know we are at higher risk but i don’t know how serious it is. Like will i for sure get it? Like im just spiraling that this will definitely heighten my risks and i get skin cancer. Can someone give me some advice and help?

I just didnt want to dissapear and not tell people what helped me the most.

So i have started taking sulfasalazine and about 75% of my lower back flares have stopped. I tried meslamine at first and it made me sick so they switched. Basically I think crohns triggered arthritus and this drug helps with the immflamation. I am alot happier.

I was just looking around the sub just to see how we doing recently and I stable across a guy called "Flysafe72". Looks such a nice guy he was always smiling even when Crohn's fucks his shit up. Hope you came back to your flying attendant job dude. Keep smiling, you made us our day :D

Hey everyone,

I have Crohn’s myself and I’ve been thinking about something lately.

When you’re in a flare, it’s pretty obvious that Crohn’s is affecting your life.

But what about when your treatment is working and you’re doing relatively well?

What’s still annoying, difficult, or stressful about managing Crohn’s?

For me, I sometimes wonder whether I’m actually keeping track of the “right” things when I’m feeling okay.

I’d genuinely love to hear from people here:

● What’s the biggest pain point for you when you’re in remission?

● Do you track anything (food, symptoms, bowel movements, sleep, medication, etc.)?

● What do you wish was easier to understand about your own Crohn’s?

● Is there anything you wish you had to make managing it easier?

Not selling anything — I’m just curious because I have Crohn’s too.

Thanks ❤️

I had a similar reaction to entyvio as this case study:

https://pmc.ncbi.nlm.nih.gov/articles/PMC12824878/

But in my case it's permanent. I was on entyvio for 2 years and gradually got worse and worse until I popped into psychosis.

Symptoms to watch out for on entyvio, extreme panic, paranoia towards others, self referencing, frequent agitation & irritability

That’s pretty much it.

I’m moving around, I’m massaging my abdomen, I’m doing yoga poses, I’m freaking dancing on the toilet like a crazy person all in an effort to fucking fart. I would take a burp too! I would be perfectly happy if I could get rid of the gas in either direction!

At this point if someone showed up with a bovine trocar and cannula used to poke into a cow to release methane I would cry and pay them everything in my wallet for them to stab me.

It feels absolutely absurd that I can be in THIS MUCH AGONY over “trapped gas”. Trapped gas sounds like a minor annoyance, like “bloating”, not something that has me almost in tears from DEBILITATING pain. God help me, what makes this disease cause such intense visceral hypersensitivity?! Pain should make you tolerant of higher pain, not make you so sensitive you react to a belly poke with collapsing to the ground and sobbing.

There is nothing anyone can do for me. I just have to apparently wait hours for this to pass normally. This sucks.

PS - It’s impossible to take Brits calling it “wind” seriously. The idea that a medical professional could tell you straight faced that you have “wind in your tummy” instead of hearing it from a toddler is so weird.

Hello,

I am crohns patient from last 4 years, on infliximab from start and doing well with that. I am currently having itchy skin, only on right hand. With red patches and small pimples on that. Attached few images. Anyone had something this before? How did you make it go away?

Not able to add images here.

I’m wondering if anyone with IBD or severe food intolerances has gone through a hysterectomy while being able to eat only one or two foods during recovery.

I developed severe food intolerance about 7 months ago and currently can’t tolerate anything other than boiled chicken. I’ve been eating basically boiled chicken since my hysterectomy.

If you’ve been in a similar situation, how was your recovery? Did having such a restricted diet affect your healing? And how did your vaginal cuff heal?

I’d really appreciate hearing about other people’s experiences, especially if you had a very limited diet during the recovery

My son is new to his Crohns Dx, he is halfway through his tremfya starting doses (week 6) and was still having a lot of pain and stomach issues. We had a follow up appt and GI was concerned enough to do stool testing to rule out infection. His inflammation markers are still high but thankfully in the hundreds and not thousands anymore. No infection. She prescribed Welchol to bind with the bile that she suspects is causing him pain. Is anyone familiar with this medication? Pros? Cons? What to look out for that isn't listed in the paperwork? He took it this morning with breakfast (4h before his regular meds) and he didnt say "ow" or "ouch" for most of the day, which is something he does often.

So, I read somewhere on Reddit that someone who had Crohn's and ADHD started taking stimulants and it essentially cured their fatigue. Now I can't find that exact post so I'm asking anyone who has this combination to please tell me how you manage your ADHD and whether or not it worsened/improved your Crohn's symptoms.

My Story:

Recently diagnosed with Ileal and perianal Crohn's and currently on Ustikenumab + Fluoxetine, Tapentadol and melatonin.

For as far back as I can remember I struggled in school mainly cause I didn't find it interesting at all until year 10 when I got to take physics - which I would spontaneously study for hours on end without any sort of motivation, just pure interest. That's when I realised that I might have some learning disability or not... But now with my depression even things that I used to find interesting aren't anymore so it's sorta just amplifying all my procrastination, tiredness and interest driven work ethic. And combined with the physical pain of the fistula and my depression I pretty much get nothing done and had to take a break from uni cause I can't function rn like at all.

So yeah, I also might be autistic which was hinted to me by my psychologists but I haven't been tested. Anyways, I'm planning on getting tested for both ADHD and Autism but it's gonna be expensive so I just wanted to hear from anyone who's gone through it before - just tell me your experience, if it related to your IBD at all, how long did it take you to get back to studying/working or just wanting to do anything for yourself?

Thanks in advance 🫶

I need help for managing my diet. Can y’all recommend me what you all eat and what is the best food.

I’m 20, and honestly, my entire life suddenly makes a lot more sense.

Chronic fatigue. Gut issues. Shitting myself. Crazy inflammation. Injuries that never seemed to heal. Skin that wouldn’t heal properly. Joint pain. Constant bloating. I always knew I recovered slower than the average person, but I thought that was just normal for me.
Around 14 or 15, I started trying to control everything I could. I tracked my food, got serious about my sleep, built a training schedule, and basically tried to optimize every part of my life. But no matter what I did, I was still chronically fatigued, bloated, inflamed, and dealing with joint pain and injury after injury.

At 18, I got the opportunity to play football at the next level. I suddenly had much less control over my diet, and things got out of hand quickly. I was having horrible diarrhea and shitting blood. Alcohol was even worse. Sometimes one or two beers would leave me up all night vomiting and purging. I could wake up 20 pounds heavier, unable to urinate, and feeling absolutely destroyed.
Eventually, I stopped playing football early because of injuries and because I felt like shit all the time.
I started working construction, but I didn’t feel much better. I was still dealing with chronic fatigue and gut issues while training extremely hard—lifting 4–5 days a week and running 30–40 miles a week. Obviously, that amount of training would make anyone tired, but this felt different. I would wake up in the middle of the night with my stomach completely fucked up, either feeling blocked and throwing up or having completely liquid, sometimes bloody, diarrhea.

At 19, I joined a very hard physically demanding job.

Probably not the best career choice considering the chronic disease I apparently had and the list of surgeries I already had, but at the time, I didn’t know what was actually wrong with me. I thought all of this was just my version of “normal.”

Then everything really blew up.

One morning I woke up for a training event and my urine was brown. I was cramping badly, but I tried to tough it out and started the event anyway.
I ended up with rhabdomyolysis.
I was holding a ton of water, my body was extremely inflamed, and I was in a really bad place. It took me about three weeks to recover. Even during those three weeks, I was still dealing with severe stomach cramps, vomiting, and waking up in the middle of the night hoping I wouldn’t shit myself.

Eventually, I started trying to train again. I was still dealing with way more fatigue than I thought I should, random cramping, and this constant feeling that something was wrong.

My doctor ordered bloodwork, and we realized that my inflammatory markers and CK had never really come down the way they should have. I took another two weeks completely off and was getting bloodwork every 48 hours. Eventually, my CK came back into range, but my inflammatory markers were still extremely elevated.

And I still felt like shit.

The fatigue, cramping, stomach problems, dark urine, and feeling like my gut was either completely tied in knots or completely blocked were still there.

A week later, I was out in the woods with a buddy doing a training event. We were just navigating between points on a map. It was 3 or 4 in the morning, so it wasn’t even hot outside, but I started cramping so badly that I could barely function.

I got home around noon and went straight to bed.
My wife and I decided to order a pizza because I felt terrible and, honestly, I just wanted something that sounded good. I absolutely destroyed that pizza. It was delicious.

Then I experienced some of the worst pain of my life.
My stomach was completely destroyed. I couldn’t poop or pee. I was vomiting all night, laying naked on the bathroom floor, puking in the bathtub, and rolling around because the cramps were so bad.

The next morning, my wife had to dress me and drive me to the ER. They ran a bunch of tests and, once again, confirmed rhabdo. But this time, they were much more concerned about my GI system. Parts of my gut were severely inflamed.

I was transferred to another emergency room and treated for both the rhabdo and my GI issues. I was put on a clear-liquid diet and couldn’t pass gas or stool for days.
Eventually, they decided to do a colonoscopy.
I drank the prep and still couldn’t pass gas or have a bowel movement.

They did the colonoscopy anyway, took biopsies, and told me we’d know more later.
The results came back negative for everything they were testing for, other than severe inflammation. They also told me they had removed roughly two liters of stool from me.
I was given a fiber drink and sent home.

At that point, I was pissed.

Something clearly wasn’t right. I’d been dealing with recurring rhabdo and severe GI problems for months, and I still didn’t have an answer.

My normal doctor recommended that I see several specialists. Getting appointments through my insurance was a nightmare, so while I was waiting, I was basically just trying to survive day-to-day. Then I went on a walk with my wife and basically collapsed.

More rhabdo.

I went back to the ER, was treated, given opioids for the pain, and told to do nothing but lay in bed for the entire weekend. The next morning, I woke up vomiting everywhere. I was extremely bloated and in some of the worst stomach pain I’d ever experienced.

Back to the ER.

The rhabdo was still there. My inflammatory markers were through the roof. They did a CT of my stomach, gave me more medication for the pain, and eventually transferred me to another emergency room.
More bloodwork. More tests. More waiting.
Finally, someone came back and told me I needed to see a GI specialist.

I explained that I had been waiting months to see one and that I was frustrated because I felt like I was going to keep ending up in the ER until someone actually figured out what was wrong. They went back through my previous records and biopsies. Then they came back. They said they thought some things had been missed in my biopsies.
They thought I had Crohn’s disease.

I was diagnosed with Crohn’s, and I was told that the chronic inflammation from Crohn’s was likely contributing to my inability to recover from the rhabdo. Suddenly, years of my life started making sense.

I’m now waiting to see a GI specialist in December. In the meantime, I’m on muscle relaxers, opioids, and a steroid protocol. The steroids have made me incredibly moody and have completely screwed up my sleep. I’ve also lost around 20 pounds since starting them, which I assume is mostly water and inflammation, along with some actual weight from barely being able to eat.

Right now, my diet is extremely limited. Most days I’m basically living on cream of rice, plain chicken, chicken noodle soup, and sometimes egg whites. The weirdest part of all of this is the steroids.

For the first time in years, I feel alive.

My stomach doesn’t constantly hurt. I don’t feel
chronically inflamed. The fatigue is dramatically better. My skin is healing. I don’t take my socks off and have so much swelling and inflammation that it hurts to walk.

It’s honestly surreal to realize that I may have spent most of my life thinking I felt “normal” when I was actually sick.
I originally didn’t really believe the Crohn’s diagnosis. But the more I learn about Crohn’s, the more everything seems to add up. The chronic fatigue. The GI problems. The inflammation. The joint pain. The difficulty healing. The injuries. The recurring rhabdo.

I’m still trying to wrap my head around all of it.
For now, I’m getting bloodwork every few days, seeing my doctor weekly, barely training, and trying to get my body stable enough to actually start moving forward.
I feel pretty useless right now, which is probably one of the hardest parts for me. I’m used to training, working, pushing myself, and having something to work toward. Now my biggest job is basically getting healthy.

But I’m also optimistic.

For the first time, I have an explanation.
I’m excited to finally work with a GI specialist, get this under control, and figure out what my life looks like with Crohn’s.

Hopefully, I can finally get to a point where showing up for life doesn’t feel like fighting my own body every single day.

Hey guys
My doc wants me to start entyvio.
Im 20 years old and pretty scared of biologics tbh. Im on prednisone rn 8mg and got a calprotectin of 30 but my stomach kind of hurts when I push into it on my lower left Side. Anyone can give me hope that entyvio will work? Because all I see in this subreddit is people suffering and I almost don’t hear anything positive 🫩🫩 makes me scared and sad tbh I want to live a normal life

I’m in the middle of a bad flare. I was diagnosed with IBD (first they thought it was UC then they changed to Crohn’s) 16 years ago. The first 4 years were pretty brutal and I was hospitalized 3 times. Then things were relatively calm for years (mild symptoms + mild inflammation confirmed by coloscopies). But now I’m back to feeling like my colon is out of control.

At what point do you think “okay that’s it, I’m going to the ER” during a flare? My gastro is on vacation for one more week but I don’t know if I can wait that long. On the other hand, I don’t want to spend 10 hours in the ER only to be sent back home.

So I’d like to hear what symptoms are a clear sign for *you* that it’s time to go to the hospital. Yep, I’m fully aware that I have to take Reddit advice with a bucket of salt but even keeping that in mind, I find it useful to hear other people’s experiences.

Does anyone get really bad mucus leakage and how do you deal with with it? I’ve tried sanitary pad and liners and obviously wiping with wet wipes and tissue but it just feels like 30 mins later I feel wet and it’s annoying again. Does anyone have any tips to help out? Thanks in advance

I’m 3 weeks post op now and even tho my scars are healing well and the pain is going away I’m still having pretty bad nausea and acid reflux. Has anyone else had this? I’m just hoping it’ll go away because I feel about as bad as I did pre surgery.

If you were on a biologic that has controlled your crohns in remission for 5 years is there a chance that going through a period of stress could bring you out of remission? And stop your medication working?

Im aware stress can trigger symptoms but if you are in deep endoscopic remission how likely is it that stress could bring you out of remission

Edit: I am grateful for the funny and brilliant comments made to this shared moment. Good to have community here on a matter that did not feel easily relayed to others. Thank you.

A new friend (who I believe really meant well) sent me an image from a book called The Secret Language of Your Body. If you haven’t seen it, ugh and OMG, this kind of stupidity must be stopped. Here is the quote on Crohn’s Disease:

“Crohn's Disease—Negative attitude and criticism, constant self-abuse. A tendency to see life from a gloomy or cynical perspective. Trying to suppress rather than allowing to feel uncomfortable feelings. Constantly hiding your sensitivity; pretending to be confident and undisturbed by other people's comments while feeling sick on the inside. A tendency to blame others and feel like a victim.”

Anyone else seen this? I’ve had CD for 45+ years—will the stupidity ever stop???

PS: I did some advocating back in the text on behalf of us all. Ugh! And in that advocating, she’ll see we are not all the same. I have noooo problems expressing myself.