Hello! I (25f) have struggled with severe stomach issues my entire life, but it worsened when I was 18, they told me it was anxiety and it wasn’t until last year that they gave me a colonoscopy, they found some inflammation in my duodenum and my oesophagus, but the rest was normal, then I had a pillcam and they found erythema in the terminal ileum. My CRP is significantly raised, and so is my faecal calprotectin, I have constant low grade fevers, periodic rashes all over my body, blood in stool, chronic diarrhoea and constipation (alternating), sudden urgency to go to the toilet (to the point where I have to run to a toilet, and ive shit myself while in public and unable to find a toilet), not feeling empty and strong pressure in my butt, anaemia, and b12 deficiency, raised liver enzymes and I get stomach pain so severe that I’m vomiting and passing out, I have to take liquid morphine. My gastroenterologist is booking me in for a second colonoscopy where he is going to try and get a little higher than the last doctor did. I don’t understand why it has been so difficult to get a diagnosis when it seems so obvious? I am slightly overweight and feel like this is affecting getting a diagnosis, because people expect you to be emaciated with crohns. During my first flare up (which was the worst ive experienced) I lost 25kg and looked extremely unwell. I have read about people getting diagnosed with crohns / IBD with less evidence / symptoms than I have. I’ve been trying to get a diagnosis for almost 20 years now, (more seriously in the last 7 years) is this normal? I know they have to be thorough, but from the very beginning, I’ve brought up the possibility of crohns and everyone has doubted that I have it, including my current GI, but with every test, we keep finding evidence of it. He even said that the inflammation in my terminal ileum “could be nothing”, I’m really struggling. Thanks!!

I am curious to see if you think the Crohn diagnostic had a positive impact on your quality of life.

I've had Crohn's for over 20 years and it's been relentless. I've had 5 operations, colonoscopies at least yearly. I'm refractory to biologics and have run through the lot, been on clinical trials and have been on steroids on and off since diagnosis.

I'm now up for another surgery which would be a permanent ileostomy (I had a temporary one before). I'd have less than 200cm of bowel so will likely have small bowel syndrome with possible intestinal failure. I have three strictures and currently can't eat (liquid diet). Even on the liquid diet, the pain is way beyond my threshold. I have asked for a second opinion but I'm not very hopeful.

I have had enough and I don't know what to do. I don't want my life to be like this - the pain is awful, my world is shrinking and all I want is a damn burger.

It just seems utterly hopeless.

How do you keep on going when things just seem to get worse and worse? It just feels like it's impossible to stop the constant medical interventions, there's never a break.

I'm trying to support my husband as much as possible during this transition. What are ways that family and friends supported you during your early diagnosis that helped the most? Also would love to hear about anything that helped you navigate this new normal.

How can you guys ever tell if blood in stool is from a flare up or from something else? Had about maybe two tablespoons of bright red blood in the toilet (when using the toilet). I have no other symptoms. I’m waiting to see a doctor. Just freaking out. I don’t want another flare up 😭😭😭

Has anyone had this issue before?

i’m very prone to getting tired from medications so i take most of mine at night. i took my first dose of Rinvoq today around 2pm because i didn’t think it would cause me to feel tired, but i am super sleepy now.

I have had 4 hospital trips for the same reason. 3 admissions to inpatient. Sudden diarrhea, throwing up, abdominal pain. I’ll be fine for two weeks then I happens again. My WBC has gotten as high as 30. I’ve had blood in my stool. And my fecal calprotectin is 585. I just got an endoscopy and colonoscopy yesterday, the doctor took 4 biopsies. The only official thing they have diagnosed me with is colitis. I am almost certain I have Crohn’s disease, but I’m not sure why they are so hesitant to diagnose me with it. I can’t keep living this way. I also am now so afraid to eat anything. Could anyone give me what works best for them? Also a safe list of foods? This is all new territory for me as I’ve never had any GI problems until a couple of months ago. And now it’s non stop and debilitating.

Hi. So I had a right hemicolectomy almost a year ago and had my first colonoscopy a few days ago. I’m still bloated and it feels like my gut is still settling. Never had this with previous colonoscopies.

Did you experienced any mild side effects with your first colonscopy after a resection?

So I have a seasonal job right now (Working as a highschool football medic). Football season is almost over and with Christmas coming up, I need to start getting presents. My best friend offered me a job with Little Cesar's, pay isn't bad for hours.

My only issue is I'm in a terrible flare right now. Nauseous (taking zofran almost daily for it), terrible diarrhea, chronic fatigue, etc. It's bad in the morning, as the day goes on it's slightly better. I don't really want to but I need to work. Any tips or advice right now?

I got my first new treatment on Monday, I know it’s not supposed to work right away but I’m begging it to work quicker.

I’ve basically been sofaridden for the past three days with terrible stomach aches and sickness from eating literally anything in this nearly 3 month flare. I’ve had to sleep 3+ hours every daytime aside from today because the pains keep me awake.

And I think I’ve unlocked a new symptom this flare - extreme cold at random times! Shivering with four blankets on. It just feels like I cannot do anything at all without something triggering and it’s destroying me so much.

Sorry just needed to rant somewhere a bit.

Hi all, I’m (27, M) new to the group but have had Crohn’s for about a decade. I’ve always tried to “push” Crohn’s off to the side (don’t worry, I am on medication for it haha) in the sense that I try to forget I have it. I do try to eat well and work out in general, but any symptoms I have I just say everyone has issues like this, or it’s just IBS not IBD related. Recently though, I’ve been acknowledging it more and am thinking about putting in an ADA accommodation request at work. I’m doing well (knock on wood) but really want to work from home so I am close to my personal bathroom (I’m sure many can relate). My job can be done from home completely, but my company requires us to go into office 3x per week (recently increased from 2x). I know legal advice can’t really be given here, but I’m curious if anyone has ever put in for an accommodation like this? I’m just nervous that I’m asking for too much/this isn’t reasonable. Thanks in advance!

I normally use Humira but my prescription expired and I have to miss at least one dose because of my country’s weird policies about biologics. They do not give me the prescription because all my tests were done in another city, my hometown , but im in uni so I will have to wait until my report is approved again until i can start using it again. Some of the required tests take about 2 weeks and my dose is supposed to be tomorrow. It can be 1 or 2 doses that i may miss.

My own doc in my hometown is really bothered by this, as am i. Has anyone had to miss a dose this long? Im considering going to my hometown to get it, even tho its far and my midterm week. My last flare was just getting better, if i will possibly flare again, i will do whatever to avoid it. What was your experience?

Endoscopy, Colonoscopy, and Small bowel MRI clear but everyday I’m suffering. Gallbladder, Pancreas, Spleen and Kidneys are supposedly fine.

I really thought they would see it on the MRI but i’m feeling so deflated.

Synptoms:

Malabsorbtion (nutrients) Wierd Bright Yellow Stool for 5 months First IBS-D now IBS-C Severe bellybutton pain - feels like something stabbing me and pulling me from behind there and feels like tearing Nausea and no appetite LRQ pain and URQ pain Affecting my periods Belching / So much excess gas and bowel sounds Losing weight Sometimes blood in stool Feels like something is stuck to the wall of my lower abdomen that I can feel when breathing in and out

I’m going to beg my GI for a pill cam but after that I don’t know. Has anyone tried medication for chrons as a trial without scans showing anything?

Has anyone had above symptoms specifically the bellybutton pulling and pain?

Thanks

just to add my calprotectin was over 200

Hello ! Got a NG tube inserted this morning (7 hours ago) Is that normal it hurts when I swallow? Or when I move, my stomach/chest hurt/burn like when we swallow a big pill that rubbed through it? Will it pass ?

Welp back in July I had a test and my number was 246 so not crazy but out of normal. Doctor immediately wanted to drastically alter my infusion schedule and/or add another drug. I said woah silver let's retest and see if they lower. Just got the second test results back and they doubled. 😓 Really bummed as this is ensures all the changes he wants. I guess my question is seeing some people in this reddit with 1000, 2000 even 3000 calprotectin is 470 bad? Enough to drastically alter my treatment plan? My blood work has all been great. 40yrs old male, Crohns since 25, on biologic infusions for 12 or more years. Thanks for any insight or advice.

I have a severe flare up and I am currently not medicated because my doctor is waiting for biopsy results, however I have cramping pain that makes me non functional. Is there any immediate relief from that that doesn't include serious drugs like steroids? do IV NSAIDs work? I tried antispasmodics like mebeverine but found no relief..

Just had my third (last) infusion yesterday. Today I feel like I've been run over by a bus, then a truck and then a train. Don't feel like eating which is totally abnormal for me. This is the absolute worst I've felt of all three infusions. Not much more to say really. Just came to commiserate.

Edit Feeling a little bit better. Had a nap and been eating. A bit of a rollercoaster with flu-like symptoms I guess but no fever. Just that feel a little and then feel worse kind of thing. Perhaps my immune system gathered the troops shouting...we may be a bit confused but we will not be ordered to stand down!

Hey everyone, Ive been noticing my eye bags/crepey mess worsening under my eyes, loads of joint pain( right wrist, left lateral hand pain, left knee pain, ankle cracking and wrist cracking), lots of fatigue especially after eating lots of sugar. Just tired all the time, back also hurts (scoliosis most likely is the cause of that though, although I never used to have significant back pain till these last few months).

I take Remicade infusions every 8 week, and 10mg tablet of methotrexate on Saturdays and 5mg of folic acid on Sundays.

Does anyone else have joint pains and like cracking, lots of fatigue and super bad under eyes 😭😭.

I’m also hella bloated and have been for around 2weeks 💔 anyways pls share yall

Hey everyone,

I'm a 45 year old woman with a five year old child.

So... For over a year I have had the indications of crohn's show up in my blood tests and stool collection. Sky high inflammation, anemia, C-reactive protein and others... I got labeled with IBS when I was in my early twenties and my gal bladder died at 25.

I'm wishy washy on how upset to be at my doctors for this. I get it with my gastro, she didn't order those blood tests and I had mild inflammation anytime she did run a test. However, my primary ignored a ton. Bad results on a blood panels in a row? Yup, she ignored them. To be fair... I've had meh health since I was born. I also have had major experiences that caused PTSD when the Crohn's flares started getting worse, so I get it. I have a list of medical issues that are being treated or have been in the past, including child hood seizures. I dunno, I'm in a ton of pain and maybe I just want someone to be mad at?

I'm also running a low grade fever and coughing from heavy antibiotics. I have to admit, I'm embarrassed. I wasn't even going to mention the thing that I thought was a fissure to my gastro doctor. I thought I was having a heavy period. I think part of it is having been diagnosed with hemorrhoids at nineteen and being laughed at by nurses.

It wasn't a fissure. I've not had them for a long time but I have in the past. It's fistula that requires a drain, I don't know it that's the right terminology, and yeah I'm exhausted. Just another thing to add to the pile. I have a surgical consolation coming up but in the meantime I'm a bit scared too. Gastro says most likely I would need a quick drain placed... But she doesn't know for sure. She only knows what she can read off the MRI and what she can see. Again, not really mad at her.

How do you deal with all of this? I feel like a bad Mom. I was coming to terms with my body and now... I hate it all over again. I'm not dysphoric or wishing to be in a different body, I simply don't want to deal with pain anymore or the inability to run with my daughter... Or the utter and complete exhaustion. Don't get me wrong, I am not in a crisis but I'm so tired of all of this... I look drunk walking into my daughter's school! Sometimes I can't leave my own house because of the demands of my... You get it.

Last night, or a few nights ago I dunno I'm so confused right now, my daughter said "I don't like you anymore, you're too cranky." No, I don't yell at her but my patience can run a bit short when I'm in so much pain. I know part of it was because she tossed her listening ears into the abyss for considerable amount of time but it still hit me right in the chest. We talked about it and I explained everything in terms she could understand again. She's more upset that I can't give her piggy back rides right now.

My gastro gave me a website but it's more clinical and a lot of eat this don't eat this... Does anyone have any advice?

I've got another doctor appointment tomorrow for pain management. Gastro will be putting me on intravenous medication every eight weeks.

Hey guys, I've been on biologics for a while and as of recent every 3-7 days before I get my monthly dose of Remicade (Once per 4-weeks) I start feeling more frequent stomach aches and have to use the bathroom more often than usual. I was wondering if that's normal? Or should I be a bit worried

Hi yall! I just wanna know if anyone’s has had a similar experience and can possible share insight?

I’ve been on Remicade since April of this year, and if you already know it’s an infusion medication that you have to get like every 8 weeks.

My experience with it so far is that as soon as i get the infusion done i feel AMAZING and all symptoms subside and i just feel like on top of the world. But then once i get to that 4-5th week mark, i believe it starts to wear off and symptoms starts to gradually return and worsen up until it’s time to get my next dose again, and then repeat.

I went to my GI about this and the consensus was either they up the dose or shorten the time of when i get it. After doing some labs and MRI’s she put in a new order for me which I guess she decided to just up the dosage amount from 5mg/lb to 7mg/lb.

I get the new dosage amount this friday as i’m currently suffering with symptoms and i just want to know if anyone has dealt with something similar as this and did increasing the dosage amount actually help you???

It was a big fucking mistake mamma mia jesus christ on a horse

I have been in remission for many years but couple years ago I stopped taking medicines (asacol). Im still in remission but my hairline has started receding and couple years ago I had perfect hairline. Could stopping medication be reason for that? Can I have inflammation still in remission?

Hello, fellow Warriors!

So, I have been having some serious eye issues. I was diagnosed with Anterior Basement Membrane Dystrophy. I’ve, also, been really exhausted, like sleeping the sleep of anemia.

Yesterday, a blood test came back that I was deficient in Vitamin A. For a normal range of 34 to 94, I came back with a 32.

I’m wondering how much a low 2 points can be affecting me? Can it be the cause of my eye trouble & my corneal erosions?

My doctor seems clear that I have Vitamin A based Anemia, but isn’t sure if the eye issues are related.

And I know that a Vitamin A deficiency is super rare in the U.S., but I wonder if any of you has dealt with it and can tell me about your own experience?

I took 200,000 iu’s (prescription from my doctor) of vitamin A today, will take the same again tomorrow, and another 200,000 iu’s in a week and then retest in another week.

Starting hadlima this week for crohns which i was recently diagnosed with, wasn't too nervous about it until I started doing some digging online and started seeing risk of cancers and what not, I guess I'm just wondering if negative side effects are common with it? I can deal with being at risk of more colds and stuff but man some of the other side effects are a little scary.

So I have had surgery and been on around 4 different types of biologics and medication. None of these have had any effect and my calprotectin is at an all time high of 4500. Steroid treatment doesn't do much other than make me hungry all the time. I'm relatively new to crohns (diagnosed 4 years ago) so is it a possibility that no medicine will help and/or I cannot go into remission? Do I just have to live the way I am right now?

Any help or even just personal experiences are appreciated, thank you.

For the last three years, I've had constant and unrelenting severe IBD flares every few weeks, making me pretty much homebound and sending me to the ER a few times.

Two months ago, I moved from the US to Europe, and my symptoms have been significantly better since. I started attending two universities here a month ago (at the same time - the campuses are right next to each other - long story - med school and vet school) - so you can imagine I've been extremely stressed and sleep-deprived. Despite this, my symptoms have been entirely controlled and haven't been interfering in my life at all. I don't have any labwork to back it up, but at the very least I've been feeling much better. I no longer have liquid stools or blood loss, I'm no longer running to the bathroom 10 times a day, and my fatigue has improved.

Europe is much more walkable, and attending classes at two universities means I'm walking more than I normally would, so I've had about 12000 steps per day. I think the physical activity is a very significant contributor, but I also wonder if there are other factors.

I take public transport every day, and haven't been very strict about hand-washing before eating due to time constraints (don't recommend, obviously, normally I wash my hands constantly, you can contract harmful pathogens from doing this) - but I wonder if that has diversified my gut microbiome and helped regulate my immune system. Studies show that microbial diversity is reduced in individuals with IBD. I also went to the zoo a week ago, and I spent a while at the petting zoo section with some farm animals, and then didn't have an opportunity to wash my hands for several hours afterwards. I know it seems like a reach, but I feel like my symptoms have improved even a bit more since then. There are some studies that say that spending time in nature, in rural settings, and with animals can have microbiome benefits that help regulate the immune system. I wanted to ask if anyone has ever noticed any improvement in symptoms after getting pets or moving to a more rural or agricultural area? I lowkey wonder if being a vet would actually be a better option for my health, considering I would get to interact with a wide variety of animals and be exposed to a wide range of bacteria. I would like to expand on this topic and provide some academic sources, but unfortunately I'm low on time at the moment and it's 1 AM.

Last of all, Europe has more regulations on food additives than the US. I've actually been eating an unhealthy diet here - lots of processed foods, lots of sugar, and things with additives like guar gum and carageenan. I do notice I feel a bit worse for a few days after eating something with guar gum and carageenan, but it's not terrible. Overall it seems like there are still fewer food additives used here than in the US, and I wonder if that could be another factor. I was eating a much healthier diet in the US, and yet feeling so much worse.

I'm just curious if anyone else has any stories or experiences like this?

To give a an idea of the severity of my IBD (not 100% clear if it's Crohn’s or ulcerative colitis): For the last three years, I've been trapped in a constant cycle of severe flare ups, where I would feel awful for a few weeks, spend a few weeks gradually improving, and then relapse into another bad flare. I had frequent bloody stools, extreme flu-like fatigue, and just a general sense of being really ill as well as low on electrolyes. I ended up in the ER twice, and felt like I was constantly on the verge of another ER visit. The first visit was for critical potassium deficiency (where I was passing out, violently shaking, in extreme pain, and my teeth were chattering uncontrollably), and the second time I was there for temporary vision loss due to a retinal hemmorhage caused by anemia (from the blood loss.)

I had graduated undergrad, but then became pretty much home-bound, partially due to difficulty finding a job in my field but mainly because it was hard to accomplish anything with my health status.

I apapologize for rambling and not providing sources, but as I mentioned it's 1 AM and I need to sleep/study.

**Obviously, based on most current evidence, I recommend frequent hand-washing, as a lack of hand washing can expose you to harmful pathogens that can cause a flare up or increase risk of autoimmunity - but I wanted to share my (unintended) personal experience and discuss the hygiene hypothesis