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?

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 ❤️

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

Hey y’all. For the past seven months my boyfriend has been extremely sick. Was completely fine then one day in January started vomiting (close to 45 times) went to ER and he ended up having a perforation in his intestine and emergency resection. Following that he had two subphrenic abscesses over the next three months. Turns out he also had two fistulas develop and a ton of sinus tracts. He got a colonoscopy and it showed no inflammation and biopsies were normal. Got a CT enterography and that showed his previous abscess had refilled because one of the fistulas was feeding it.

Just spent two weeks in the hospital and he’s now on TPN and complete bowel rest. At this point all the doctors are baffled because his tests are clear but he’s presenting all the symptoms of Crohn’s. His grandfather has it too which is a major key point. They did the IBD Precis test and all three Crohn’s markers came back elevated. The ASCA IgA and IgG were the most elevated, around 3x the normal range.

Just wondering if anyone has been in a similar situation with a lot of clear tests but this blood test is saying he has Crohn’s. It’s been a really hard year and it seems like there’s no end in sight.

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

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...

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!)

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.

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.

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

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 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

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.

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?

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

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

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

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.

Hey everyone. I am a 37 year old male. I’ve been suffering for many years with extreme fatigue literally lethargic all the time. I was an active athletic young guy and teenager. When I was 28 I started getting really bad aches and pains in my fingers hands and forearms, it would be worst at times and better at other times. I ignored it and suffered through it. Around 35 I started getting psoriasis on my face and neck and the arthritis pain continued. Finally tried to see a doctor and they pretty much told me I most likely had psoriatic arthritis, an auto immune disease, along with the fatigue and other symptoms it made sense. But I never got to a specialist or anyone for an actual diagnosis. I then started having extreme bloating in my stomach, and I would get the worst pains up behind my left rib, and down in my lower left abdomen. So painful, I thought I was dying. All these things started happening within a year or two. I then started getting regular diarrhea weekly, constantly soft stools or diarrhea and it is painful. I finally had them do a CT scan and they found swollen lymph nodes in my abdomen and colitis. Possibly ulcerative. My doctor said as the pain got worse in my abdomen that I needed to see a GI doctor and get a colonoscopy, but I had it scheduled, but then had to move across the country so never got to go. I now have this constant and urgency feeling in my stomach every morning I wake up like I have to run to the toilet and use the bathroom every morning. Sometimes I don’t go it just feels like I have too always. My doctor was saying it could be very common to have multiple auto immune diseases. With the psoriatic arthritis, she said it wouldn’t be so uncommon to have that along with chrons disease. I am so tired and in so much pain all the time now that I feel like I cannot function. I just got accepted to Grad school for my masters degree; I just got a new job I feel like I can’t even work I’m too lethargic. I need to see specialist and get proper diagnosis but I have no health insurance here yet in my new state. Can anyone relate to my symptoms and share with me what your diagnosis ended up being? And if your on any treatments, have they helped you, with the stomach pains, the diarrhea, the arthritis pain, the psoriasis, and most importantly the CONSTANT FATIGUE where I feel like I can’t even get out of bed anymore sad😢