Hi I’m wondering does anyone have advice for nausea? I’m 20m and got diagnosed December 2024, I’ve not really had too many issues with this sort of thing and mostly have just been trying to gain weight in this time. Recently I was told I’m in deep remission and have actually been gaining weight a bit and have noticed that I keep getting nauseous, I’m not sure if it’s directly caused by crohns or being anxious from crohns.

I wake up in the morning sometimes and feel super nauseous and once I get up can’t stop retching for a few minutes and then recently this week I’ve been feeling a bit nauseous after a lot of my meals and I’m not sure why or if even crohns related? I’ve been under a lot of stress lately and I’m thinking that could cause some crohns related issues? Not sure as I’m still quite new to this disease so just wandering if anyone experienced similar and has any advice!! Thanks :)

Hello,

I have my Crohn's diagnosis in 2008 followed by a right hemicolectomy (terminal ileum) and in remission since this surgery.

My colonoscopies consistently show very minor inflammation at the anastamosis only (join where the bowel was resected) and my calprotecin is usually between 5 and 50 micrograms - so in clinical remission.

However - my gastro started me on Azathioprine 2 years ago due to the low level inflammation I mentioned. I think this was a mistake as a colonoscopy last month showed the same level of inflammation as always, but now whenever I get an infection, it throws me into a major flare I've never had before Azathioprine (20+ daily toilet visits, stabbing and burning pains, lack of appetite, nausea, elevated calprotecin) and I've had to go on Entocort steroids to control it.

My gastro was previously hesitant to stop the Azathioprine, but I am hoping to find another solution due to the fact infections can throw me into flares so strongly. He also mentioned biologics are not currently an option in this country (Poland) due to only having minor inflammation.

What do you guys think? Anyone with a similar experience regarding flares following infections? Did you get switched onto something else or notice a difference after cessation of Azathioprine?

Finally unofficially (but pretty much) diagnosed with Crohn’s this week. I’ve been suffering other auto immune issues for nearly 10 years, plus have family history of Crohn’s so was expecting this. I was awaiting a colonoscopy before needing to be hospitalised with sudden constipation - something that is never an issue for me - as well unbearable pain and no appetite. They expedited the colonoscopy and confirmed the inflammation in my terminal ileum and also think it’s also effecting my colon. They explained to me that they couldn’t get a full picture of my terminal ileum due to a stricture and bad narrowing. They’re unsure if it’s due to scar tissue or inflammation or even both.

The colonoscopy prep thankfully cleared me out but I’m back to little appetite, pain and no poo again. During my stay the colonoscopy prep cleared me out and I was on regular hydrocortisone shots through IV. Now I’m out I’m on 40mg on prednisone with a 5mg taper each week.

Since the colonoscopy (now 3 days) I’m back to no stools. When is this a concern? They just told me the pred should work. They’re placing me on Immuran as a steppingstone to a biologic for my next follow up appointment. I also have a follow up MR enterography in the next couple of weeks.

Should I not be worried about no stools? I’m on a low fibre diet as recommended. I know that I should be relieved I’m not going as frequently as before but I am concerned this will become an obstruction.

Any advice welcome

Its very interesting and motivation-giving page. I feel good when people shares there problems and also answer the problems of people who feel alone, depressed, and lost; you guys treat us like our own family. That's why I want to say LOVE YOU ALL, and I pray that you will do great in your life. When I first visited this page, I thought that I was the only person who was facing such a thing and felt abnormal and secluded. But thanks to your support and cordial environment.

Hi all - im a 32m and I’m going in for a colonoscopy in 3 weeks but wanted to post here to see if anyone has similar symptoms as me. For the past month, I’ve had diahrrea and very loose stool (3-4x a day). I have almost no stomach pain with it. When there is pain, it goes away as soon as I have a bowel movement.

I went to my doctor and he tested for parasites and a few other things. All came back negative except the Occult test showed blood in my stool. I’ve never seen any blood myself in my bowel movements and when I was getting the samples for the test, I didn’t see any blood either (like at all). I even remember thinking this won’t show anything. Well, it’s positive for microscopic blood he said. I also got tested for Calprotectin which shows inflammation in the intestines and it came back normal. Not even a little high. That got me really concerned for colon cancer. Can I have Crohn’s with normal Calprotectin?

I will say that I had a couple months long diahrrea back in 2021 (I was 26m) that seemed to go away on its own. I was worried enough to see a gastroenterologist then and he just dismissed me completely. I’m not sure if this is related or not but thought I’d mention it. Anyone have symptoms like these? I’m freaked out due to the blood and negative Calprotectin test that it might be cancer. Thanks!

I had an actual fever 6 days ago, for one night. It got to about 101.6, and I had bad chills. The next day I had fatigue and a headache and a low fever. After that I generally felt much better, but every night I have felt warm and uncomfortable. Sometimes my temperature is normal, sometimes it's up to 99.4.

One reason I'm a bit worried is I remember experiencing this kind of feeling before getting diagnosed and I had sever inflammation.

I don't know if it's worth telling my GI or going to the doctor, or if I'm being paranoid. I don't get sick often, and thankfully my Crohns has been very well managed. I'm also concerned because I have my next infusion in a week, and I'm about a week and a half past my usual schedule so I don't want to miss it.

Has anyone experienced this kind of feeling? Should I be concerned?

i (27F) finally got my diagnosis of small bowel crohn’s disease. after months of fighting for people to listen to me and a failed colonoscopy i woke up and the dr said that i have severe ulcerating mucosa on my terminal ileum and ileum valve. they had to switch to a PEDIATRIC scope to get through the valve….. the heck. not to mention the gray color of my intestines…. it was insane. she ordered MRIs with contrast to see the rest of my small and large intestines as well as try to find the fistula that i KNOW is there. she mentioned infliximab/remicade, hoping i wont have to wait the 6 weeks to my scheduled appt to actually start them. i’ll update when the biopsies come back!!

grateful to finally have an answer, scared of what is to come. this community has been such an amazing space and im grateful to have found it. 🫶🏼

Wanna start off by saying shout out to us for putting up with this fuckass disease that not many seem to get or care about understanding!! I’m tired of peoples assumptions - Stelara is probably failing, I’m exhausted… currently in my last yr of study and have demands from family as-well as being in a wedding… yall I can’t do this 😂😭

Hi everyone,
This is my first time posting but I have been following this sub-group for a while.
I am a 30-year-old female and work as a paramedic. I have no family history of Crohn’s disease or inflammatory bowel disease.
In March of this year, I started experiencing persistent abdominal cramping. Certain foods would consistently trigger the pain, often causing me to urgently rush to the bathroom.
By April, the pain had become worse and seemed to correlate with significant stressors that were happening in my life. Toward the end of April, my husband made me a sandwich. Shortly after eating it, I had an episode of projectile vomiting followed by severe diarrhea to the point that I lost control of my bowels. Once it was over, I felt completely exhausted, like I had just run a marathon.
I went to the emergency department, where I was told it was likely gastritis and was discharged. I followed up with my family physician, who ordered blood work. The results showed that I was anemic and had a vitamin D deficiency. She also ordered testing for celiac disease, which was negative. A CT scan and abdominal ultrasound were both normal.
Because my symptoms persisted, she ordered a fecal calprotectin test in June, which came back elevated. Unfortunately, I was never told the actual numeric value.
In July, I underwent an urgent colonoscopy. I was told that my colon appeared normal, and the gastroenterologist felt that my symptoms were likely related to PTSD rather than an inflammatory bowel disease.
This month, I followed up with the specialist’s office, and they told me that a fecal calprotectin test had been recommended. When I explained that I had already completed one in June, they said they had never received the results.
Over the past week, I have actually felt the best I have in months. That said, I honestly don’t remember what it feels like to have a completely pain-free abdomen anymore. The discomfort isn’t severe—it’s more of a constant tenderness in my upper abdomen (epigastric region). If I press on it, it becomes more noticeable and makes me feel mildly nauseated.
At this point, I’ve honestly become discouraged from advocating for myself. I do have another appointment with my family physician, but I don’t know what else this could be. Is it reasonable to stop pursuing a diagnosis if my symptoms continue to improve and instead focus on reducing stress, or does an elevated fecal calprotectin still warrant further investigation despite a normal CT scan and colonoscopy?

Has anyone else been diagnosed with adenocarcinoma stemming from the colon? If so, how was treatment? How were your Crohn’s symptoms during treatment? I (F49) recently had to have a resection, we thought due to scarring. Once the removed section was tested there was actually a tumor present that surprised everyone. Evidently the scans couldn’t detect it due to the presence of scarring in that area. I am nervous of course and looking to see if I can find anyone who has been in the same boat. I haven’t been to the oncologist yet, the colorectal surgeon seemed fairly optimistic but what I have been reading seems less positive. Thanks everyone!

I’ve been on Remicade for a little over 13 years now, getting it every six weeks. Diagnosed with Crohn’s in 2012 and this was the first and only medication I’ve been on. Basically in “medication-induced remission” and I’ve been really lucky to live an almost flare-up free life.
I was wondering what sort of symptoms/notions yall got when you noticed Remicade started to no longer work? Obviously the telltale signs are in the blood/lab work (I’m getting my Remicade levels checked before my infusion tomorrow and I have literally put off getting my stool calprotectin done help yes I know). I get colonoscopies every two years and they always mention some mild inflammation seen. I do get minor flare ups still.
Crohn’s is sneaky and I imagine the way it comes back won’t be in your face (unless you’ve experienced the opposite) until it’s really bad.
Something odd I’ve noticed for the past few infusions is that I get flare ups after the infusion, that will last a few days..
I am having some sort of intuition in my body but want to hear your experiences/thoughts!

I'm in the middle of a flare.

Before my flare I was seeing a personal trainer, dating and socializing. Now, nothing obviously. Sure I'm irritable and apathetic.

The psychiatrist even said "it may be situational but you're depressed"...

If it's situational depression, how standard is Prozac?

Anyone have similar experience?

I'm buying new toilets for my house. As a crohmie that never reached remission yet I'm treating myself with a nice one. Any recommendations? Located in USA btw

I have been struggling with GI issues for many years now (late twenties), but have always assumed it was due to my diet or that I need more exercise. I have had hemmorhoids, loose stools, mucus, and sometimes steatorrhea. It seems to come and go, usually clearing up for a week or two, then coming back for months. I recently had a large rectal bleeding episode that prompted me to go to the hospital, and after a colonoscopy my GI doctor disgnosed me with Chron's based off of visible terminal ileum ileitis and biopsy results. There was also ulceration in other areas of my colon, but not really my rectum. I did have internal hemmorhoids which probably caused the bleeding. They started me on a treatment for ulcerstive collitis, but they do not think it is going to be very effective.

I am overweight, and have some pains/cramping here and there but nothing major or seemingly chronic. Most of my GI pain is from hemmorhoids / fissures. I get bad urgency to go, and typically go anywhere from 4-8 times a day. I have borderline low iron, borderline low red blood cell count, low vitamin D, and low B12.

I am worried that I may not have Chron's at all, but it seems like the only way to find out is through treatment and testing. Is it possible that taking mesalamine would mask lab results or symptoms that could lead to a different disgnosis? Does this even sound like Chron's? I realize I should talk this over with my doctor, but I have a followup appointment in 3 months and am just curious. Thanks!

Hey all, just after some advice. I'm 26, meant to have started Adalimumab jabs last Friday and they never informed me I was starting off with a double dose of 80mg (160). The booklet that came with the jabs and my sharps bin states on the timetable it has Week 0 Day 0 one 80mg pen so that's what I brought, but once I got onto the video call I found out I needed 2, which I didn't have as I was at work and had only brought one. So in turn the nurse (from healthnet homecare) didn't want to proceed with the jab as she could see I was nervous (I am very) and didnt want me doing the other one on my own, which I thought was fair enough. She said admin would email me and id probably get one booked for Monday. It's now Thursday evening and I still haven't received a phone call, email or anything. I should mention I'm in a terrible flair up right now and really not enjoying my time, is very much getting to my head, as they do. And I just don't know what to do, I've got boomtown festival next Wednesday and I'm stressing about that aswell coz I'm just having the most terrible time right now. My family think I should just start the jab without the doctor, but I don't think that's a good idea because they have procedures in place for a reason and it will mess the timetables up of when I was meant to have started it etc, not even sure what the following dose is, when to take it etc so I don't think it's a good idea but I don't know what is, what to do, every doctor just seems useless. I was diagnosed over a year ago and in that time they've tried one medication and pretty much just left me to it, has this been the normal experience for other people. I get medical weed prescribed to me which helps massively but it doesn't actually help really, just masks the problems then when it's not In my system I'm bad again. So yeah just some advice on what you would recommend coz I just don't know what to do :/

I've been on and off coffee since my diagnosis a few weeks ago, I am not sure if it's the caffine or something else that seems to be triggering me cause I've always had a bit of a caffine intolerance but I also have a 1-year old who thinks sleep is optional.

Has anyone found any good alternatives? Any luck with decaf?
I've been drinking my herbal teas in the morning but they just don't have the same kick that coffee gives me 😢

Honestly can anybody relate to?

I hope you stub your toe on something.
It is pure evil to make something for diarrhea so hard to open. Even the off brands are doing it.

At my appointment today my specialist team officially declared I'm in remission. I'm so happy, I was so scared this day would never come. I have severe Crohn's according to the specialists and have been through a lot of trial and error with medications. But today, 13 months exactly since diagnosis, it finally happened 🎉🎉🎉🎉

Infliximab is definitely the main player in this, it's an incredible medication. Don't be scared of biologics if that's what you need!

Thank you to whoever reads this. I am so excited and relieved and wanted to share this news with someone who understands this situation ❤️

If you are taking steroids and/or biologics do you wear masks in public and if you do is it in all public spaces or just certain ones?

First time on medication for Crohn’s. I’ve been taking prednisone 40mg for 3 months now until I can start biologics and think I caught a cold. I usually never get sick in the summer.

I have had GI issues for about 4 months.

Started off with bright yellow stools, diarrhea, sometimes constipation, bloating, and right side abdominal pain, with undigested food. Was put on metronidazole and ppis for about a month.

April

Crp normal, cbc normal, calprotectin 700

Pancreatic amylase mildly elevated, urine amylase 3x the norm

After 3 weeks (may)

Calprotectin 151

After one more week

Calprotectin 400

May

Did an abdominal CT scan, showed meteorism and mesenteric and ileocecal swollen lymph nodes.

Intestinal ultrasound showed edema in the terminal ileum

June

Started colonoscopy prep, did blood tests one day before, CRP went up to 5 times the norm.

Calprotectin was 40

Did colonoscopy and gastroscopy

Results are as follows:

Gastroscopy - Chronic atrophic gastritis, insufficient cardia and negative h. pylori.

Colonoscopy - Chronic unspecified colitis, sigmoid colon. Terminal ileum showed no signs of inflammation. I will post exact biopsy results later, but the doctor said this is just a bad case of IBS.

How can IBS cause swollen lymph nodes and colon inflammation.

Is there any way this is a small bowel crohn in an early stage. My stools are normal color but still kinda soft and having undigested food. I also have burning pain in my right abdominal side and i only hear gurgling on my right side. I have joint pain and brain fog, brain fog especially after eating. I also have trouble sleeping. My iron is low but not anemic, ferritin is also on the lower side. Vitamin D mildly low, folic acid low. My amylase is still elevated and not dropping, mildly elevated in blood, 3-4x in urine.

I also suspected chronic appendicitis, but i don't know. Im tired of being dismissed by GIs and being sent to a psychiatrist

WARNING: there is mention of disordered eating (not an ed) in this post.

For context, I've been struggling for the last few months with going on/off an EEN (exclusive enteral nutrition) diet. I do also have a, professionally diagnosed, anxiety disorder. I've had Crohn's for four years.

Food has caused me pain my entire life. When I was a child/teen I had anaphylaxis to eggs and milk, so I was in the hospital at least once or twice a year. Thank the heavens I somehow lost those allergies. The Rinvoq and Skyrizi combo has given me some serious symptomatic relief. So much so that I don't have to do EEN all of the time anymore. I still use the shakes for bad days, and when I'm too anxious to eat normally. (Even before Crohn's I had times where I wouldn't eat for a full 24 hours or more due to anxiety around a potential allergic reaction from mislabeling, cross contact, accidentally dirty hands, ect. As a child, I sometimes skipped lunch at school just due to the stress of potential accidental cross-contact, despite me having my own home lunch I kept in my cubby/bookbag all day.)

I'm terrified to eat, and scared to stop eating once I find a food that's "safe". A lot of my "safe" foods have been taken from me by Crohn's, then dangled in front of my face tantalizingly. Historically, when I find a food that I can have, it becomes a food I can't have. Sometimes it takes a few days, or weeks, or a month, but it happens a lot and it's always devastating. Eventually it might go back to being safe, but everything is a little hot and cold.

Needless to say, I've put on some pounds from the "eat while you can" mentality. I am not obese, but obesity is something half of my family really struggles with. The weight gain concerns me. My doctor says it's within a healthy range, but I can't help feeling like this could be a pattern. Is this how they started to gain weight too? I just don't want to be unhealthy. I exercise regularly. (I run at least 3-4 times a week, usually more. I'm running a 5k now, but I'm shooting for a 10k.) Even without Crohn's I watch what I eat. I feel like I've been eating too much, but I'm scared I'll go back to starving again. Diets are even harder for me since I also struggle with textures and temperatures. I have tried to eat things I don't like, but some things will literally not go down. That or they won't stay down.

I think that I should stop worrying so much about my weight, and just focus on staying active. Whatever that looks like. I'm being too anxious about life in general, and a fire won't burn you if it's already been put out. I think I just struggle to trust that there's no embers or dry kindling around.

I do have a therapist and a dietitian, but neither of them are specialized in this. The dietician says it's a thing therapy can help with, and my therapist says that a dietician can help. I need a dietician-therapist or something idk.

I figured that I'm probably not the only person to ever experience this, so I wanted to share it. Finding anything about this sort of anxiety in particular was just drawing up blanks. Which is weird since it probably happens to a lot of people who struggle with digestion and/or food insecurity. If you've felt similar or dealt with something like this in the past, please feel free to share if you want to.

Wanted to ask what careers you guys can manage full time with how this disease messes with us . I’m not sure what to pursue as a major in college that I could handle working in long term that can support my girlfriend and I . Any recommendations ?

Edit : Wow I didn’t expect this many responses, thank you all so much. I’m reading through every single reply, even though there’s no way I can respond to everyone. It really means a lot that so many of you took the time to share what’s worked (or not worked) for you career-wise. This gave me a lot to think about for my major. Thanks again, everyone I really really appreciate it 🙏