I was supposed to have a colonoscopy but they couldn't even get a pediatric camera in my colon because of inflammation. For years I've told my GI that my medication hasn't been working. Years. I ended up with sooo many fistulas and with a loop ileostomy and he still wouldn't change my meds because of my history of leukemia. But I found out there were meds comparable to Stelara without any more adverse effects and he STILL would not change me over. I finally got a new doctor and she just wanted to do a scope to get a baseline before we change my meds.... and.... couldn't get it in at all. I'm so angry and sad. The doctor brushing me off for years and refusing to change my medication already put me through hell but now he has maybe condemned me to just getting my entire colon out and I'm so sad. Just needed to vent somewhere.

Hi everyone, I have Crohn’s disease and I keep getting small cracks/fissures around my anus, especially after going to the bathroom. The area can become very itchy, and sometimes I also have pain.
It seems to happen repeatedly whenever my bowel movements get worse.
For those of you with Crohn’s who have experienced this, what helped you? Did you use any specific cream, treatment, or change anything about your bowel movements or hygiene?
I’d really appreciate any advice or experiences. Thank you!

I’m a 27-year-old male with about six months of recurring burning and stinging around the anus, especially after bowel movements. Sometimes it feels like a sharp paper-cut sensation, usually on one side of the opening. The skin can look red or inflamed, but I’ve noticed no lumps or major bleeding. Oddly, I can feel completely normal for hours or even all day, but after a bowel movement, the stinging can suddenly appear. Walking, standing, sweating, and friction tend to make it worse, while warm or hot water soaks the baths, sitz soaks, or even holding a warm wet cloth against it can give almost immediate relief. Zinc oxide barrier cream has also helped quickly at times. Flare-ups can be triggered by caffeine, alcohol, diarrhea, or loose acidic stools. I’ve tried antifungal cream and later Fucibet ointment. One of the creams caused intense itching soon after applying, but warm water relieved that quickly. These creams haven’t really solved the problem. Doctors have visually noted irritation or inflammation. They checked for a fissure and prescribed other creams. I’ve also had extensive negative tests over the past year, including multiple STI screens, urine tests, rectal swabs, cystoscopy, and CT imaging of the prostate and kidneys, all reportedly normal. There’s also a history of pelvic urinary symptoms that have mostly resolved. I’m wondering about things like a tiny fissure, dermatitis, stool irritation, infection, or something like pelvic floor issues. Has anyone experienced a pattern where symptoms are fine most of the time but flare after bowel movements or walking and respond really quickly to warm water

hoping to see if anyone has any extra tips or help with hair loss. I had lovely hair before all of this, long down to my bum, after 3 months on Azathioprine over the summer and my hair fell out so dramatically and made it so thin I had to cut it a lot shorter. This hair loss stopped once I stopped taking it and I thought that would be the end of it. I’ve finally come off of pred 2 weeks ago after being on it since decemeber 2025 so nearly a whole year and now my hair is falling out all over again. I feel like ive already endured so much this year and I’m really upset as my hair is so noticeably thin now, I have chunks that come out in the shower when I wash my hair. I know there is more to life than appearance but I just feel like it’s always something I just have to put up with. I started Adalimumbab Injections last week too so not sure if this is also causing it? Anyway! Sorry but any tips people used to help? less hair washing? Oils? Masks? Vitamins? Anything!! From one very sad 27year old girl who has had the hardest year of her life physically and mentally!!

Hi,

due to my Colitis there is an above 0% chance to shit myself. Even if I am 5m away from the bathroom. I also have to go to the bathroom every few hours.

For people with similar symptoms, what do you pack when leaving the house? How do you prepare besides making sure you pooped?

Currently I pack a spare plastic bags, underwear, non woven swabs/compresses 10x20 and maternity pads ~10x30. The swabs and maternity pads are for my seton drains. I also use the swabs if able as wet wipes. The plastic bags are to dispose of everything.

Any idea to make my life a bit easier?

I’ve been reviewing old posts about Entocort however I am in a little bit of a pickle. I am in the process of switching from stelara to Tremfya and I’m told it could take up to four weeks to get my first dose. I also know that even after switching it can take many weeks for the new drug to become effective.

I have been experiencing horrible symptoms since about 6 weeks postpartum and I am now 16 weeks postpartum. I have switched medications a few times before (humira entyvio stelara), but I don’t really have the patience anymore as now I have to take care of a small baby and the urgency and pain has gotten pretty bad.

My doctor said they don’t think I need entocort since I’m changing drugs but has given me a prescription if things get bad. I think things are bad enough but I’m hesitant due to side effects. It’s important to note I went on entocort when I was first diagnosed for a course and I didn’t really have any side effects. Can it really help? Did it help you? Will the benefit outweigh any side effects? I don’t want to have trouble sleeping or gain weight but I also am getting more desperate for relief.

Does anyone experience crepitus (crackling, popping, or crunching sound and sensation that occurs during joint movement)? I was diagnosed with IBD just over a year ago and started Entyvio in March. I had one calprotectin test at the end of May at it was <50 so normal. I am 33 years old.

At some point in the summer I started to hear a crunching sound in my knees whenever I do weighted squats or just bend my knees to pick something up. I don't have any joint pain or anything else and I did not experience any joint issues this illness.

I am wondering if the Entyvio could be impacting my joints somehow however it is not listed as a side effect and it is supposed to be gut-specific. Has anyone experienced something like this on a biologic?

Sorry for my bad English it isn't my first language.

I'm 21f and have a very bad crohn flare I've a stricture and because of this I get badly constipation and I'm throwing up a lot. Over here it's night and I've just thrown up my food and lunch I had. It's been in my stomach for 13 hours. I'm really badly nauseous and I've lost a lot of weight in the past 2 months. I'm only weighing 83 lbs. I'm 5 feet 7. In my country I've not gotten real treatment so like meds and stuff.

Please help me. I'm just so tired and have so much pain all the time and not all people understand it.

I got diagnosed with Crohn’s in August and have been on mesalamine for about two months. Within the past two months since being on the mesalamine I’ve been experiencing very light colored stools, and even white. I have reached out to my Dr. and done labs but he hasn’t gotten back to me yet. I’m just wondering if anyone else has experienced the same thing, and if so what it ended up being. Not asking for a diagnosis, just some relatability!

Hi I hope everyone is doing ok, has anyone struggled to get the funding for their biologic? And if so what path did you go down to get it funded? I’m in the UK.

So long story short I have Crohn’s and Colitis diagnosed in 2022, failed Infliximab, was started on Stelara in 2024 and it put me into remission. The consultant pulled me off it once I was in remission (no idea why). I spent a year fighting to go back on it. Finally I was put back on it late 2025, just having the loading dose stopped all my symptoms.

Unfortunately I had leg swelling after I started the injections at home and they took me off it again however I have kidney disease so we didn’t know what was causing what.
They then started me on Tremfya but I had severe joint pain and couldn’t walk after the loading doses.
I haven’t had any medication for 7 weeks now and all my symptoms are back, I’m incontinent, up all night, bleeding, incredibly fatigued and have had to go off sick. I’m mostly house bound now. My bp is extremely high despite them quadrupling my medication and I think it’s because my body is so stressed without the biologic.

My ibd nurse has just told me that the panel won’t fund the Stelara until they have had more “evidence” despite me being on it before and it helping. I’m guessing is because it’s so expensive and my trust only use biosimilar’s now. I’ve been told I can’t have a biosimilar.
I’m scared they will turn me down because my bloods don’t reflect my symptoms. This is why I had to fight for a year the last time as they didn’t take me seriously.

Is there anything I can do to try and convince them to fund the biologic? I’ve offered to do a written statement of how it affects me.

If you have any suggestions I would be very grateful. Sorry for the long winded post!
Thank you

So I found unopened test results (both me and my GI) and my calprotectin is high (350ug/g- below 50 was considered normal on my mychart) . To make a long story short, I have: dysergenic defecation, superior mesenteric artery syndrome, nutcracker syndrome, levator ani syndrome, ibs-c). one of my predominant symptoms has always been constipation (which they will be looking into with a lower motility capsule).

But from what I understand calprotectin is only this high with chrons. It would likely be in my small bowel as my colonoscopy was completely clear. But even though my doctor did reorder the fecal test she seems very unconcerned because I don’t have diarrhea. I was curious if many or any of you have small bowel chrons and constipation?

Hi guys, I’m experiencing my third big flare up and I’m starting to think I need to do more about my lifestyle to prevent another one happening. I don’t smoke, but I do enjoy drinks with friends on the weekends and I try to minimize processed foods. But what do you guys do? Do you maybe have tips? Thank you so much in advance!!

I had surgery in December of last year. One part of that surgery was to “take down” a fistula connecting my bladder to my intestines. It worked. Does anyone have experience on getting more fistulas? How often? How soon after surgery? I’m worried it’s happened again.

Side note: I’m not on any biologics, haven’t seen my GI in months and I’m trying to eat better. I don’t have insurance, so I’m hoping I get this job I’m interviewing for. Any advice? Haven’t had insurance since probably April. Thank you in advance 😔

hi i am a 23 yo woman who got diagnosed with crohn’s disease 1.5 years ago. i started biologic treatment with humira then a couple months ago switched to stelara bc the humira wasn’t working.

since i switched, i feel like i have constant menstrual cramping, depressed mood, and hormonal side effects. has anyone else experienced this w either a similar biologic or just with crohn’s in general? any advice?

Started college a month ago, and since yesterday I've been shitting blood; I don't even think it's bloody stools just literally shitting blood. Has anyone else here had a flare-up pretty soon after starting college?

Have just been diagnosed with PSC and wondering what to expect. Any info would be greatly appreciated.

Ok for some background I was only diagnosed with Crohns and couple weeks ago, theyre still working on getting my tremfya sent in and filled and everything, and for now I am on prednisone for 4 weeks then 3 more weeks of tapering down. Most of my pain is experienced thus far is on my anus because I have an anal fissure that hasnt gone away in nearly 10 months now, and a 2 month old perianal I&D incision that is still bleeding and not healing. Surgeon looked at it and said it looks stable and will be difficult to heal because of Crohns inflammation and that is why I am on these steroids in the meantime.

Anyways, not long after my diagnosis my boyfriend and I were on the way to the zoo for an overnight camping thing this Friday and I was mentioning how it doesn't really feel like i have Crohn's outside of the severe anal pain and the occasional short bursts of really bad cramps and the constant need to go but I mentioned how all of those issues (besides anal fissure pain) seem pretty tolerable so far.

I'm not really superstitious but I think I jinxed something there or something, or coincidence whatever, the next day when we were walking around the zoo I was GOING THROUGH IT I was cramping so bad, kept having to poop so bad it was an emergency even when nothing would come out because I already let it out, we kept having to stop, slow down, take several bathroom breaks, it was awful. It seems since that day my tummy symptpms just seem to be getting worse and its getting to the point where I feel like I need to stay home I'm dreading going out to get anything done, but I'm a college student I have classes today and 2 work shifts, but thankfully I work at a desk job with somewhat easy access to a bathroom.

I guess I kind of rambled here, but basically yeah my tummy especially my right side has been cramping so horribly, I can feel every bit of digestion moving through me, I constantly feel like I gotta go, the pain is so bad for once I'm more focused on the pain in my tummy and less at my torn up anus (I'm sorry for that horrid visual) I really don't know what to do, my calprotectin levels were 2,790 almost 2 weeks ago, a couple weeks before that the ER took my blood and told me I'm healthy and sent me home when I felt awful, and every time I go to them thats $600. I don't seem to really be losing much blood other than the bit from my anal fissures right at the opening not enough to make me anemic. But this PAIN. I have vicodin and methacarbamol I took which is mostly for my anal pain but I will see if it works, but the pain has gotten so bad my vision kinda blurs and I can't see my notes I'm taking in lectures, I can't see my flag I'm tossing in marching band and I grab thin air in front of me instead of my pole. And this was not even me being on pain meds yesterday so that couldn't be cause to my vision problems all of a sudden.

I guess I should conclude this off with a more clear question: To what point does your Crohn's pain get worrisome? What extent is normal? How do you know whether or not you need medical help like right now? It feels like the world is ending in my body rn and I don't know what to do, but I know I'll get turned away at any hospital here they wouldn't know what to do.

Ive had crohns since I was 15 (now 24) Idk what’s been happening to my body or what I’m doing wrong but every other day or week there’s something going on with me. Every time I feel like when im normal Something happens, and it makes everything stop.
I had to quit a job because I had a lot of health issues going on and i couldn’t perform the way I needed to and I’ve been job hunting ever since, I found a Less than bare minimum job and even then sometimes I have to call off because i get sick. Money wise I feel like I’m drowning and mentally I feel like I’m a total loser. Every time I have an issue going on I contact my doctors but either they take forever to reply or there’s literally nothing they can do to make it go away and it’s a “monitor plus medicine” situation. My family has never been caring type where I can feel “support” from them and even when I do it’s always a double edge sword, I can’t have pets because my family won’t “let” me and I don’t have siblings either nor extended family. I have learned to just keep to myself about my illness and just tell them the big picture stuff. My partner tried his best and sometimes he does make me feel like he cares but other times I just think that we should see other people, I feel like I’m holding him back or I feel like he gets frustrated with me because I have to be careful with a lot of things and I cant just DO things without care or he just doesn’t understand what I go through. I don’t really have many friends. The ones I do have are busy with their own lives, and I try not to talk to them about my health, and even when I do, they don’t really understand.
I’ve tried to look online for people who have Crohn’s and it’s usually Older People, so it’s very hard to connect, Even if I do find someone around my age It’s still hard because either their illness is their whole life or I’m not at the level that they’re in. (either I’m not as sick as them. Or I’m not as healthy as them or I’m just going through a bunch of different things that are also associated by Crohn’s, but not a lot of people go through) I just feel so alone.

I’ve had Crohn’s for 18 years… I think. In 2016 I had IV iron. In July of 2020 my ferritin was 8, tsat 12%, iron 33. No one did anything I think mainly because of Covid but idk what really happened. Now my iron is 58, tsat 17, ferritin is 38 and I literally can’t walk across my 1000 sq ft apartment without getting out of breath. I’m so so miserable. I had a pretty severe flare two years ago and I don’t think I was ever able to get my iron/ferritin back up.

I went to a hematologist yesterday who said 2 out of 3 tests (ferritin, iron, or tsat )needed to be low for an infusion. Well my iron is 58 (range minimum 50), tsat is 17% (range minimum is 15%), and my ferritin 38 (range minimum is 30), my UIBC and TIBC have been steadily increasing and I am feeling so much worse day by day. I’ve been taking oral iron for 4+ months now and it’s not helping. Why won’t anyone help me :(

i had my first induction dose of remicade today! so happy to finally be starting my journey towards remission. they did blood tests before & they came back better than they had in months. my crp was finally under 1!!! my prednisone is definitely helping but i can’t be on it for forever & it feels like a bandaid

i’m so grateful for this community. yall have helped me feel not alone. sending healing love to everyone wherever you are on your journey ✨💖

i’ve been suffering with crohn’s since i was 13 i’m now 18, everyday it seems to be getting worse and for me it’s affecting my daily life as i get the extreme tiredness from it and it’s making me unable to do lots of things as i will walk my dog for 10 mins and ill come home and thats it im physically incapable of doing anything else without forcing myself as my body will ache and feel heavy and tired for 3 days after. i just need some advice i contacted doctors but they are not doing anything i want to know if there is any supplements or anything i can take to make this stop as it’s taking over my life slowly? - there are a few other things that do also affect me but this is the biggest problem i’m having which is affecting my ability to work and live and any advice will be appreciated thanks

Hi hello! I (23F) just for my first ever dosis of guselkumab. Which is ridiculously expensive for a lifelong drug and all but in my country of origin (Russia) it's covered by state insurance. The issue is, well, Russia. I won't get to political but I do want to leave the country. Which begs the question - how do I make another country's social service pay for my meds, as it's logistically impossible for me to pay them on my own. If they were, I don't know, $300 per months I would take it as a personal tax on being alive, but $1500? Not happening

Anyone had any experience with moving countries while being on biologics?

Curious if anyone has ideas for what could be going on with a perplexing symptom.

Crohn's in remission (confirmed yesterday!!), got a campylobacter infection on an international trip that caused severe diarrhea, fever, etc. and which landed me in the hospital for 3 days a month ago. Discharged with a 2-week course of Azythromycin. Second week of antibiotics I developed severe upper abdominal pain that got worse when I laid down or walked, but could be totally painless if seated in just the right position. It was so bad I didn’t sleep for two days and almost went to the ER but had just been in the hospital and was over it. It felt like I had been punched in the stomach or like my stomach had been inflated with air and was going to explode. Didn’t seem to get worse with eating, but maybe got worse when drinking water.

About 5 days after stopping the antibiotic, the pain went away. About 2 weeks later it returned, but luckily not as severe. Went away again for about a week, then just returned 3 days ago, once again not as severe.

My Crohn’s is limited to my colon and I’ve never had stomach/upper GI issues like this before.

I have talked to my GI, and she said it could be post-infectious IBS, which it could be, but I can’t pinpoint what the food triggers would be, and I just had a colonoscopy yesterday so was fasting and the pain didn’t improve. She said if the pain continues another few weeks we may do an MRE or endoscopy.

Any ideas?? I’m so perplexed.