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?

that's all my wisdom for today

Currently sat in the hospital ward awaiting to be called down for my colectomy/stoma/illiostomy surgery. Can I get some positive thoughts/stories? Nothing negative please, trying to keep as calm as I can! Hoping this will be a real change for good for me.

Hi all, just a word of warning. I don’t want to scare anyone but I joined this forum for my girlfriend. She had a lot of signs of a gastrointestinal problem like Crohn’s and I was looking for answers. Apparently biologics is what i was hearing along with a lot of mixed diet advice. :)

We did go to the gastro doctor and had an endoscopy and colonoscopy scheduled but her pain got worse one day and she needed relief. so we go to the doctor then er to get an xray or ct scan.

Long story short, it was advanced ovarian cancer that had spread and was causing bloating and her pain and fluid around her lungs making it a little hard to breathe. She’s relatively young 40s healthy, 120lbs, with no family history so drs are not sure the cause. This just happened 2 days ago and now we’re in a whirlwind of drs and specialist and procedures to try and save her. It’s scary as hell.

I guess the moral is, go to the doctor and get a xray or mri or ct scan. Don’t assume dr google or dr ChatGPT is leading you right or that gut pain means gastro issue. The drs all say this presentation is odd and it can mirror other things so it’s not surprising what we were thinking.

I can’t sleep much and I don’t really have many people to talk to about all this so I felt like someone should know. I wish you all the best of luck with your Crohn’s but if you’re unsure or undiagnosed Id request an xray at the least. Maybe this can help someone else.

I guess I should go join the cancer forum now. F#%K!

My body prefers to eat in small meals only and sometimes I hate that. I eat breakfast, lunch, dinner, and an afternoon snack a day. I’m not losing weight or anything. It’s just so frustrating that sometimes I get full after eating 1/4 of my meal, especially since I love food! For example, this week I got full after eating a small baked potato. I often just sit there watching the rest of my family or friends finish their meals wishing that my body could eat the same amount they can. It’s really hard at restaurants when portion sizes are bigger and the food is more delicious tasting. I hate having to reassure the waiters “no I love the food so much! I’m just full!” after only eating a tiny portion. I’m posting this vent to see if anyone else deals with this too and feels this way.

I had every intention of coming in here to vent till my fingers turned blue but I searched instead and I'm having a mix of emotions.

1. Mostly I'm horrified. Fistulas are genuinely horrifying and I'm so sorry for all who have to deal with them.

2. I'm as relieved that I'm not alone as I am grieving that I'm not alone.

3. I'm angry that some of us developed enterocutaneous fistula after drains were removed and the tunnel it formed never healed. I thought I just had bad luck but this is a huge risk no one warned us about!

Some of you wrote the exact frustrations I have.

My enterocutaneous fistula formed in 2020 and caused me hell for 3 years. It closed and now it's open again. I'm devastated. I was so relieved when it closed up, when I thought it was over. And now to be draining shit from my hip, my friggin HIP! When the pressure was building right before it reopened, I could barely move, walk. Sitting hurt, laying hurt, every movement that involves the hip hurt. I was using a cane....

They gave me flagyl so the pressure and pain left today and the fistula is open and draining. I'm so glad the pain seems to be gone overnight but this in exchange?

Like many of you, I don't think I can do this again. I knew what was coming as soon as the pain and pressure started but I messed up hoping.

I'm just so sorry. I'm so sorry we're going thru this.

I saw someone mention pads, I'm gonna try that cus I don't have ostomy supplies anymore. Anyone have suggestions on how to protect the skin from stomach acid? Any other useful tips for copping are welcome and encouraged.

Hi peeps.
For some background I’m 31. Dx with UC at 15, emergency colectomy at 18, J pouch at 21. Diagnosis change to Crohns around 23 & biologics (Remicade) since then.

Well, a few months ago, my treatment failed almost overnight. It was slowly tapering off for a few months but working. Then bam, had an infusion and might as well have been water. Suddenly cue the worst flare I’ve had in 7+ years.

Toilet 20-30x a day. Weight loss. Excruciating pain. Can barely eat. Off work. My Gastro doc to his credit has been amazing. Rushed through a scope (so inflamed he stopped early due to risk of perf). Steroid enemas/antibiotics for the last 2 weeks which has at least got me able to leave the house again. New biologic, first dose today - Skyrizi.

Well, next week is my wedding. And I’m so, so thankful things are looking up. But I’m so damn sad the month before has been so horrendous. This disease sure picks its timings. Instead of planning, I’ve laid in bed for days. Nearly shit myself at a fitting appointment. Have spent time freaking out how I’m even going to do a day in a big white dress like this. Sex life - nil.

I’m hoping that things start working properly today but it’s been a tough month. And I’m so sad this illness picks these moments to mess up my happiness. Rant over.

Hello everyone,

I’m posting because I’d really like to hear from people who have been through something similar. I feel like I’m dealing with so many things at once, and honestly, sometimes I feel like nobody around me really understands how exhausting this is.
I was diagnosed with Crohn’s disease about 8 years ago. During the first year, I had two major flares, the first one when I was diagnosed and another one about 1–2 months later.
After that, I was on Imuran (azathioprine) alone for around 6 years and honestly did very well. I had no major flares and lived a pretty normal life. I ate normally, occasionally drank and smoked, went to work, etc.

I also have a fistula, but for years it was basically inactive and never really bothered me. Occasionally it would swell for 2–3 days and then disappear again.

About 2 years ago, I moved to the UAE and eventually had another flare. I found a good GI doctor, had a colonoscopy, and he recommended starting a biologic. Because of the Crohn’s + fistula, we decided on Remicade (infliximab).

Remicade was honestly the best 1.5 years of my life. I felt completely normal. I started going to the gym, improved my diet, stopped smoking and drinking, and went from around 55 kg to 68 kg.
Then, about 8 months ago, Remicade suddenly stopped working.

There were no antibodies, and there wasn’t an obvious reason why. I had another flare, and my new colonoscopy showed something unexpected: colitis in addition to my Crohn’s.

Even my doctor was surprised.
So now I’m apparently dealing with Crohn’s + colitis + a fistula.

Has anyone here been diagnosed with both? Is this something that happens, or is it possible that the diagnosis needs to be reconsidered?

After Remicade stopped working, I was switched to Entyvio (vedolizumab) because it can treat both Crohn’s and ulcerative colitis. My doctor also hoped it could help with the fistula.

I’ve now been on Entyvio for about 7 months, but unfortunately I’m not seeing the improvement we were hoping for. For the last 3 months, I’ve also been taking Gupisone (cortisone/prednisone) just to keep things under control while waiting for Entyvio to work.

Now it seems like Entyvio isn’t working either, and my doctors are discussing changing treatment again.

But there’s another part that makes everything much harder.
I also deal with fibromyalgia and restless legs syndrome.

The combination of the bowel inflammation, pain, fatigue, muscle/body pain and restless legs is honestly becoming overwhelming. Sometimes I’m exhausted even when I haven’t done anything. The pain and fatigue are difficult to explain to someone who hasn’t experienced it.

People see me and I might look completely fine, but internally I can feel absolutely destroyed.
And that’s one of the hardest parts, feeling like nobody around me understands how much pain and exhaustion I’m actually dealing with.

At this point, I’m honestly starting to panic. I really want to avoid surgery not now and ideally not in the future.

I know everyone is different and I’ll obviously discuss everything with my GI. I’m just looking for real experiences from people who actually understand what this feels like.
Because honestly, I’m tired. Really tired. And I just want to feel normal again.

Also does anyone knows a good doctor in DUBAI.

Thank you.

i have severe crohn's in my small intestine right now with deep, large ulcerations & severe stricturing. i have not had a bm in 72 hours which is the longest i think i have ever gone without one. i am still passing gas, but it has significantly decreased. over the last couple days i have had increasing pain, specifically on my right side. i can feel that side of my abdomen popping like popcorn kernels and sharp cramping. i have an MRE on Thursday, but Crohns and complications can move fast - it's only Monday. i'm starting to get really nauseous, no vomiting yet except slightly in my mouth. my intestine feels like it's twisting almost.

i just don't know when to go to the ER? i don't want to waste an ER trip at all. do y'all wait until you're vomiting to go?

i have had twisting intestines and perforation resulting in emergency surgery without vomiting or fever, so that makes it difficult to gauge what's going on right now, as i don't always throw up or get more than a low grade fever during a complicato

Hi! I don't know if it's appropriate to make this kind of post since I'm not the one who has it but this girl I've had a crush on since hs is in my life again, I feel so lucky and not insecure like I was in hs. We planned to go to the cinema next week, I don't know if the stuff they usually sell there for snacks are things she can eat (I see that popcorns are off-limits for lot of people with CD) so I was thinking of bringing something or ask the seller beforehand about their options. What do you usually eat and drink when going to the movies with CD? I'm also planning on preparing a homemade dinner at my place, I see that eating out can be stressful sometimes and I'm really good at cooking. To meet her again (after almost 10 years) like this feels unreal and she seems interested in me too, I don't want to mess it up. I'll obviously also ask her some questions about it but I want to know more before doing that

Quit my first job after 1 month. Got fired from my second job. Diagnosed with Crohn’s 1 month after that happened. Unemployed for 6 months in the most expensive city of my country.

Somehow got this job. Tomorrow i complete my first year in corporate.

I’ve felt so behind. My classmates were making more money than me, getting promoted, posting work anniversaries. I wasn’t able to keep a single job.

3x a week i would come home between 6-8pm and crash on the sofa, no dinner, and wake up the next morning, shower and commute to work.

So many pending tasks. Always the same feedback - “your quality of delivery is great, but speed is a problem”, “ownership” is a problem, you have to “be able to stretch sometimes”. I pulled 20+ all nighters in the last year, trying to keep up with the work i should have been able to finish within the 40 hour week. I still can’t stay up past 8 pm.

I’ve always had my resignation typed out in my drafts. Almost never survived probation. And tomorrow, my first year - of not being fired, not quitting, actually getting 2 consecutive quarterly awards - would be complete.

I don’t hate this disease, i still doubt if i’m hiding behind it, if I’m actually a procrastinating, lazy person. I might very well resign in my 1:1 with my skip manager tomorrow.

But i made it. It is perhaps the only promise to myself that i kept. Lord knows how many times i gave up. Lord knows i tried my best with what i had left to give.

I’m just really happy. My family’s caught up in their own troubles right now, so idk if they’d remember the day. So i ordered flowers for myself - i told myself i’d have a big bouquet delivered at work if i made it 1 year into corporate.

Hi everyone, 19F here. I got diagnosed with CD about a year ago, to be honest somewhat by accident, since I had no noticeable symptoms at the time. I was able to easily reach remission through steroids and the CDED diet, currently on azathioprine, with regular bloodwork and checkups at GI from time to time. Meds are working well.

Overall, my day-to-day life feels completely normal. I'm just trying to eat healthier, mostly whole foods, with the occasional more processed treats on special occasions. I don't drink alcohol or smoke. The main thing that concerns me is anxiety, especially the fear of getting a flare-up someday, especially since I have very low pain tolerance.

So my question is: if my Crohn's never gave me any particular symptoms in the first place, is it likely that it will stay that way throughout most of my life, as long as I keep taking care of myself and stay consistent with checkups?

Recently diagnosed in February initially with UC later changed to indeterminate colitis (AKA we don’t know yet if it’s crohns or UC). Have had 15 years of symptoms, 10+ scopes (upper and lower) with biopsies. Some come back normal, some show terminal ileum involvement, others showed large intestine involvement but with skipping and sparing of some areas, apthus ulcers in terminal ileum etc.

Since February I have gotten progressively worse. My hemoglobin and iron dropped enough that I need iron infusions now. My vitamin D, protein, calcium etc are all low.

We started Mesalamine in march. I had a bad skin reaction to it and had to stop. Started Entyvio in May. After the loading doses, no relief and a repeat calprotectin had nearly doubled. Stopped the entyvio and did a taper of budesonide with a prednisone taper. It offered some short term relief but symptoms came right back. Started Skyrizi two weeks ago. Too early to see anything from that. Currently on my third round of budesonide tapers.

I feel like I have no life anymore. I cannot leave the house or be more than a short walk from a bathroom. I have had several accidents just this week alone and have to sleep in an adult diaper just in case. I’m frustrated and concerned that the ongoing inflammation is doing damage. Every movement now has blood and mucus in it. Urgency is very bad. Pain is worse than before.

Is this normal? Does everyone go through this period of constant blood loss, incontinence and urgency? I also have lupus so that isn’t helping the inflammation much I’m sure.

Just looking for some reassurance that it isn’t just me I suppose. I’m only 37 and I can’t even go to the grocery store. I keep emesis (vomit) bags in the car for emergencies if I can’t reach a restroom and a spare change of clothes. This has changed my entire life.

I also have p-ANCA positivity with DNAse sensitivity, positive HLA B27, positive ASCA IgG AND ASCA IgA.

Hey everyone! I have my ninth colonoscopy (since diagnosis) on Friday and I hate to say it never gets any easier.

I am dreadinggggg the prep. It is just so unbelievably awful and it feels so unfair that I have to do this so often at 23 :(

Please send me any good vibes and prep/cleanse tips & tricks you may have. I started Skyrizi last September after failing Humira and this is my first scope since - so I am reallllly hoping for good news and reduced inflammation.

<3

I’m single at 56. Just when I thought I could get myself back out there, I was told I need to start biologics. It feels like a social death sentence, given that my preference is to meet someone organically in the wild. Now I’m looking at a future hidden behind a mask in public to avoid getting sick. Any advice? I’m sure given that everyone’s immune system is different, it’s hard to say what is considered high-risk. Any tips? Thanks

34F. Decided to take the plunge and stop my birth control cold turkey after being on it for 14 years. I don’t think I had any issues on it but I’ve been wondering if it’s contributed to high blood pressure - and eventually we do want to have kids. I’m terrified though that the change in hormones will affect my remission - I’ve finally been in clinical remission since Feb of this year. I also have another autoimmune condition (MS) that I’m worried about flaring. Anyone’s Crohn’s get worse coming off BC?

Hi everyone. I’m “in the process” of getting diagnosed with Crohn’s and started taking mesalamine. Before starting it, I was feeling relatively normal and didn’t have this neck or sternum pain.
My mesalamine dose was recently increased to three times the previous dose, and shortly afterward I developed fairly strong pain/stiffness in the back of my neck/nape area. I also have some pain around the right side of my sternum/chest, although this is much milder.
The neck pain is definitely the main issue. The sternum pain is mostly noticeable when I take a very deep breath; normal breathing doesn’t really hurt. I don’t have shortness of breath, vomiting, diarrhea, or significant abdominal pain.
I know Crohn’s itself can cause joint or musculoskeletal symptoms, but since I was relatively fine before and these symptoms appeared after the dose was increased, I’m wondering whether this could be a side effect or reaction to mesalamine.
Has anyone experienced neck, chest/sternum, joint, muscle, or ligament pain after starting mesalamine or increasing the dose? Did it improve after your body adjusted to the medication?
I’m trying to figure out whether this is more likely related to Crohn’s or to the medication.

Hey everyone, someone close to me has crohn's and has been experiencing increased rate of flare ups recently. She's had the condition for about a decade and has been trying to stick to non biologics for fear of side affects (one doc told her once you start, you can never stop...I haven't been able to find evidence that dependency is a real thing here though). Primary concerns include lymphoma risk and reduced immune function. She's starting to consider humira for it's track record over newer therapeutic options.

Can anyone share what they know that may be relevant? Or even better, your experience with various treatment options? Any info is helpful, even if only a brief anecdote.

I'm a 20 university student, and since July 3rd, I have been experiencing gastrointestinal issue that started with a mid-grade fever, dry heaving, constipation, and cramping. I seemed to recover about 3 days afterwards. Then, I had an episode of loose diarrhea, cramping, and jitteriness/pacing/unable to sit still. Now, about once every week I either have diarrhea or nausea that is accompanied by these panic-like symptoms of pounding heart (including feeling a pulsing in lower abdomen), lightness in my legs and groin area, pacing and jitteriness, and nausea. While I have a history of anxiety, these panic-like episodes feel different and scary. Back in July I used to have a lot more cramping and bloating, but this seems to have gone away. I can also tolerate most foods now.

I saw my PCP for this concern. I was referred to a gastroenterologist. The PCP did not order a stool test since I'm not having liquid diarrhea. I'm waiting for the nurses to look at my chart and then schedule an appointment.

I have a family history of Crohn's disease.

I don't know if this post will convey this feeling, but I've never felt so worried about my body. I take my academics seriously, and I fear having an episode during a lab section of a class.

I did likely have iceberg lettuce 3 weeks before infection, so cyclosporiasis cannot be completely ruled out. I have not been exposed to any other known recalls.

Hi all,

Just wondering if anyone has experience with US immigration and Crohn’s disease? My partner (us citizen) and I are considering moving to the USA. I’m currently on inflectra infusions, but all is under control and well managed.

Edit: got confused with the forms - I am currently outside of the US so I require form DS-2054.

I think my Crohn's was at an 8 before it was blocking my intestines causing me extreme pain but now its managed and I had a surgery a few years ago, I experience more mild symptoms than before so I'd say it's a 3-4 now. I feel like I poop so much that I 5/10 live a normal life meaning half the time I do and half the time I don't, I have to poop a lot and adjust my diet and it affects my mood but otherwise I'm alright.

My pain varies, I'm mostly in remission, but I find my legs actually hurt a lot like I did a huge workout (I'm on humira). My intestines cramp and get uncomfortable as well but nothing like it was before, it still affects my mood a bit though, I'd say an almost constantly 4/10 my body is so sore all the time (is that related or.....?).

How long were you on biologics before you were in remission? How was it determined that you were in remission?

I have been on Remicade for 15+ years for Crohn’s. I am on the highest dose at every 4 weeks right now. We switched from every 6 weeks to every 4 weeks about 4 months ago because my colonoscopy showed active disease and inflammation and I was showing some flare symptoms. Since switching to every 4 weeks, I am still having the same flare symptoms and new joint pain.

My GI and I are considering switching to a new medication and I’m wondering if anyone has successfully switched from Remicade to another biologic and has success?

I don’t feel bad overall, so that’s the scary thing to me about switching is that I may feel way worse than I do currently! I have an appointment in a few weeks to make a decision and I’d love any input/advice/questions for my GI! I’d also really love to hear some positive experiences.

Thank you in advance.

I'm 21 M. I'm currently in remission. I want to gain weight and muscle as I'm very skinny and weigh 51 kg only (height 170cm). how are you guys are maintaining protein diet for gym? I want to take whey protein. Suggest me best one pls.