r/CrohnsDisease

Hey everyone! I’ve been diagnosed with Crohn’s for about 3 years now and I’ve tried all the low FODMAP, anti inflammatory diets and it feels like what people call “real food”: fruits, veggies, steak, potatoes, chicken, etc. all cause me so much pain in comparison to chips, pizza, popcorn, etc. I want to eat healthier but it hurts me! It seems overly processed foods are the only safe ones for me. I could down a turkey and American lunchable but the real turkey would take me out for a few days. I am able to eat candy too, although it makes my joints hurt severely if I have too much. I’m wondering if anyone else has had this experience? Am I crazy and need to eat different? I just find it SO strange!

Long live the simple meal.

What is yours?

Hi, just wanted to know if there are any Indians here who have Crohn’s.

I’ve been wondering how other people in India are managing it because honestly, sometimes I feel like there isn’t much awareness about Crohn’s here, even among doctors.

What treatment are you guys on? Are you taking biologics or managing it with other medicines? And how has your experience been with gastroenterologists in India?

Also, I’m curious about the family side of things. Do your parents, friends,relatives actually understand and support you, or do you have to explain your condition to them all the time? How do you manage college/work along with Crohn’s?

Would really like to hear from other Indians about their experiences, especially if you’ve been dealing with Crohn’s for a long time.

Hi all, I’ve been on Humira for almost 3 years now and it’s started to produce some significant side effects due to which 2 of my doctors have advised me to switch to RINVOQ. I would really appreciate hearing your experience on 2 questions I’m pondering:

1. Are the side effects from Humira really side effects? Has anyone else started getting eczema, skin sensitivity, random rashes, tingling in hands and feet, sometimes numbness a few years into taking Humira?

2. Has anyone actually successfully gone on RINVOQ without experiencing acne, fatigue, and other side effects?

I just don’t want to switch to a medication that’s 4x more expensive and potentially more harmful in the long run to clear up my skin, as important as that may be.

Thank you!

So as the title kinda suggest I am getting slot of imposter syndrome recently regarding my crohns. I just feel like my head is wanting to do things and just get on with the day but my ody has given up and is bust flooded with fatigue. Im using a walking stick currently aswell due to fatigue and pain when walking for a while. But this has made me feel even more of an imposter. Like I've always been fit and relatively healthy and now I'm just shattered all the time and just can't do much due to fatigue.

Any one else feel like this or tips to help?

Hey all. Haven’t posted so much as was waiting on first colonoscopy, so I’ll recap my situation.

Symptoms for years, but in June things really kicked off with severe abdominal pain that landed me in A&E. CT with contrast confirmed active terminal ileitis, fat stranding, mild narrowing and lymphocytes suggestive of chronic inflammation. I’d had 3 weeks of constant diarrhoea and blood which swung right the other way and I couldn’t go to the loo at all. I ended up admitted again two weeks later with horrible, horrible lower right quadrant pain, awful nausea, really really bad constipation etc. Prescribed Ondansetron, Buscopan and GI confirmed he was thinking IBD, so he ensured colonoscopy was ordered and also ordered small bowel MRI and OGD.

Over the last week or so, the nausea and lower right pain eased a fair bit, just still fatigued etc. However, I did start noticing horrible pain in my back passage initially when passing stool, but also just on its own. I figured maybe a fissure or piles higher up.

I had the colonoscopy today and it showed scarring and older inflammation in TI and ileocecal junction, plus fresh, active inflammation in my rectum. Endoscopist said I need to take steroid enema for 4-6 weeks and she wants me on it before the weekend. Biopsies will take 12 weeks (I’m in Northern Ireland, southern trust). I am so tired of feeling ill with no firm explanation for why. Anyone experienced anything like this?

So I’m still in limbo, still no confirmation of anything, but enough evidence now to need actual treatment.

Diagnosed around the age of 15, peak hs years. Girls varsity basketball, starting to drive and every other positive hs experience you can imagine lol. Fistula, abscess and stomach pains led me to get diagnosed around 2012. In and out of hospitals for flares until I started Remicade late 2012. It worked wonders lol was in remission for a good 10+ years. Left my job of 7 years for another and had a point in time i had no medical coverage in 2024. Everything immediately went down hill. Long story short, bowel was strictured and inflamed and i was having pretty bad symptoms and flares. Fast forward to March 2026 i elected to have a resection done, that was performed July 9 2026. Since then I have felt amazing. Like I’ve been cured (although thats impossible). I am now on Tremfya and finally gaining some weight. I can tend to my 8month old son with no issues, eat what i want. Life has been great this last month. Hopefully it gets better for you too 🙏🏽

When I first got diagnosed 5 years ago at 15 y/o I didn’t understand this disease either. I thought oh it’s just a disease that makes you shit a lot can’t be that bad. I wish I was right about that but unfortunately I wasn’t. Recently i realized how sick I really was and how much I went through the past 5 years, throughout my supposed to be peak teenage years. In and out of hospitals, getting different treatments, feeling the absolute worst of my entire life but still showing up to school and sports and whatever else like everything was normal. Unless I told them, no one could tell how sick I was. And a lot of people I knew downplayed my symptoms or made me feel like I was overreacting about how sick I felt. Oh you’re fine it just makes you poop stop pretending, you can’t be that tired from it, why are you acting like you’re dying, etc. stuff like that. It’s like people really don’t understand Crohn’s disease and the severity that it can get to. I was in a flare for 3 years straight because no medicine was working. I ended up in the hospital right after I had Covid and had a 104 degree fever because it exacerbated my Crohn’s like crazy. My calprotectin was over 5000 when I got admitted. I was there for 10 days and over the course of that flare at just 17 years old, I lost 35 pounds. Because of Crohn’s, I am a completely different person. My health anxiety is terrible, anytime I get a cold or infection I’m terrified I’ll end up in the hospital again. I still have no energy and always am reminiscing of how much energy I used to have before I got diagnosed. And it just sucks people don’t understand this disease because it just feels like you’re all alone fighting it and there’s nothing you can do about it. And what really hit me was that I have this disease for the rest of my life. I will constantly have to deal with the ebbs and flows of going into remission then flaring then remission then flaring. And I’m sure a lot of people with Crohn’s feel the same way. And it just sucks that no body around me understands.

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I’ve had chronic diarrhea for about 4 months. My stools can be completely watery, and this happens even when I eat very simple foods. Sometimes it seems to happen even when I haven’t eaten much.

What’s unusual is that I don’t have abdominal pain, vomiting, fever, or significant fatigue. I mainly have watery stools and urgency.

My diarrhea does not wake me up from sleep.

Occasionally I see a small amount of clear, jelly-like mucus in the stool, but it doesn’t happen every time.

I take psyllium husk (ispaghula). It sometimes makes my stool more formed, especially when I eat rice, but it is inconsistent. Sometimes it works, sometimes it doesn't, and if I eat other foods it may not help much.

I’m trying to understand what could cause painless chronic watery diarrhea like this.

For people who have experienced something similar, what was eventually found to be the cause, and what actually helped you?

I’m especially interested in hearing from people who had watery diarrhea for months without abdominal pain or nighttime diarrhea.

I know this is a little bit of an emotional post for me, but I just wanted to ask if anyone else here has Crohn’s that is primarily/only affecting the rectal area.

I’ve been feeling kind of alone, sad, and honestly a little embarrassed about it, and I guess I just want to know if this is something other people experience or if it’s considered “normal.” Most of the people I’ve seen or heard about with Crohn’s seem to have it affecting their small or large intestine, so I haven’t really come across many people with it mainly affecting the rectum.

For a little more context, my colonoscopy showed that the rest of my colon and the ileum looked normal, but my rectum was friable and bled easily when touched. They took biopsies, and the biopsy showed chronic and active inflammation, along with rare small, poorly formed granulomas. The pathology report said the findings were consistent with inflammatory bowel disease/Crohn’s in the appropriate clinical and endoscopic setting. My GI doctor ultimately diagnosed me with Crohn’s disease of the rectum. I also have an anal fissure and chronic constipation, which makes everything even more confusing because I’m trying to figure out what symptoms are coming from what.

My CT enterography also came back with no significant findings, and my labs didn’t show significant inflammation, so it seems like the inflammation is pretty localized to the rectal area.

Sorry for the emotional post lol. I was just diagnosed recently, so I’m still very new to all of this and trying to understand everything. I think I’m mostly just looking for reassurance that I’m not the only person who has Crohn’s presenting this way. If anyone has a similar diagnosis or experience with Crohn’s primarily affecting the rectum, I’d really appreciate hearing about it. Anything helps

Hello guys once again, quick tldr I got diagnosed 2 years ago failed remicade like 3 months ago did my 3rd skyrizi infusion and now I'm gonna do the treatment thru injections in my house. My worst symptom is crippling fatigue and when I'm on my period I feel the whole going to the toilet multiple times a day. When I tell this to my doctor about the fatigue he says he can't really explain why I'm feeling like this due to my blood work being just fine and can't know why I feel like this, also when I tell him about my period symptoms he says I have to go to a gynecologist WHICH I WENT and he told me my Crohn's needs to get better for me to get better when I'm on my period but my doctor said that I have to get a second opinion. What should I do I'm pretty lost.

Hi there,

I take adalimumab injections every two weeks, and I am travelling abroad for a month.

Has anyone had a similar experiences? Does cooler travel cases work? UK

Thanks!

TIL A lot of blood donation centers (within the last 3 years) changed their criteria for blood donation and now anyone with Crohn’s on any medication at all is no longer eligible. I have donated on biologics many times over the years but now no longer. And there is a massive blood shortage which sucks for everyone. I’m not sure why I am so mad but man this disease just takes and takes doesn’t it.

I want to continue breastfeeding..and last time when I was at the hospital 5 days because of appendicitis induced by Crohn she refused breastfeeding when I came home..

Hi 23F here, got diagnosed in April with inflammation of the terminal ileum. I’ve had to stay in the hospital 3 times this year and the past nearly 2 months have been hell. Worst pain of my entire life but I typically don’t have diarrhea like I used to, I have pretty infrequent bowel movements and I have a lot of pressure and bloatedness that I assume is from inflammation and I can’t really relieve. I’ve been on steroids for almost 2 months and am tapering down now and I’ve had a lot of bad side effects like the mental fog and all that.

I’m on my 3rd week of Rinvoq and I’m still dealing with constant pain everyday, electrolyte drinks and Tylenol help but I’m so exhausted having to deal with this. I’m depressed and worried about how low the success rates are for immunosuppressants, from what I’ve seen they’re like 30-50% and then only 20% maintain remission.

Eating is a big coping mechanism for me and is the highlight of my life and it’s disheartening I can’t indulge in it like I used to. I just want to be able to live like other people and I’m just scared I’m never going to be able to go into remission.

I’ve completely cut out smoking and I’m eating safe things like rice and chicken but I’m still having pain everyday and it just feels like I’m never gonna live a normal life again. If someone could give me some encouragement or advice or support I would really appreciate it.

For context I was diagnosed at 18, I’m now 28, and I had my son in 2024. I’ve never felt guilty for having Crohn’s disease except for today.

I was finally feeling like I had enough energy to go out and had planned to go to the zoo with my son after his nap.

On the way to the zoo I could already feel the pain starting and the need for the toilet.. I got to the zoo in time and the need was gone. Half way around seeing the animals, the need came and it came fast. The pain was unbearable and I made the decision to come home.

My son is 22 months so I know he doesn’t know the difference of seeing all the animals, but I can’t help but feel guilty like it’s my fault.

Some days are easier to get through than others and this one wasn’t.

Hi—i have crohns and am almost 2 years since having my first child. Recently my bowels have been a little rough, but i can feel either gas or stool moving. It literally feels like kicks across my stomach as if i were pregnant (dont worry, this sister has had a tubal salpingectomy and a hysterectomy scheduled.) does anyone else has this? Should i be concerned?

I've been borderline anemic for a good year plus, and suffering from extreme exhaustion.

after a bunch of run around and testing my oncologist is going to try doing a round of iron infusions to see if it will help me out.

Anyone out there doing iron infusions, did it help you? how long before you saw any benefits, if any all?

Heyy so sorry in advance for this one to be clear I'm not looking for medical advice in lieu of going to the doctor's - I have already tried to get a gp appointment but I'm currently being ghosted and awaiting a call back on what to do further which I don't think I'm getting anytime soon 😭 I am looking for someone to share if their experience is aligned here and how serious it is - because I feel my doctor is not taking this seriously and I'm worried I'm panicking and causing a drama for nothing!

I have severe constipation like to the point where I need to strain to go to the bathroom and nothing is coming out except mucus - I obviously am steering clear of laxatives as I am worried that will destroy my intestine, some stuff is coming out but it's tiny and rock hard.

I am also waking up with horrid pain in my mid back on both sides and pain that radiates to my chest, the pain is not bad until I move around or bend over or do something that exerts me.

I'm not being sick but I have felt nauseous.

I look pregnant with how bloated I am, I feel like a gas balloon that won't pop

This has been going on a couple of days.

Does this line up with anyone else's experience of constipation with Crohn's? And is this something anyone else has ever experienced?

When I was diagnosed I was told about all the loose stuff but this is the first time in a long time I have been constipated and I'm seriously worried something is wrong but I already feel a bit stupid with the way my doctor has treated me and I'm worried that if I go to A&E I will just be wasting time?

On day 12 I made a post asking for suggestions on helping the bowl move. I took miralax, stool softeners, and copious amounts of water. A tiny bit moved on day 13/14. Dr.’s office called back Monday morning, after I called at 4 something on Friday. Said to take 1-2 bottles of magnesium citrate, I believe some suggested this in the previous thread. I took 2 bottles on day 15, since I took mirilax and the softeners on day 14. I have been in the bathroom for two hours with almost 30 flushes, but it has been smooth sailing! Had to bring in my phone charger at one point.

Might cancel the CT scan since I don’t believe it was a blockage and I don’t want to pay $400 even with insurance.

Idk how much longer I’ll be in here, but I feel the cleanse. Gotta keep standing up to circulate the blood.

Thank god for my bidet and thanks to everyone for their helpful suggestions. This community is always supportive.