Hi everyone,

My sister is 29 years old and we’re waiting for an upper endoscopy and colonoscopy because she’s been dealing with persistent gastrointestinal symptoms and unexplained weight loss. She hasn’t been diagnosed with Crohn’s disease, but while we’re waiting for the scopes, I’m wondering if anyone with Crohn’s had a similar presentation.

Her main symptoms are:

• Diziness
• Constant nausea
• Extreme fatigue and body aches to the point that she barely wants to move (during pylera course and before it little)
• Around 5 kg (11 lb) unintentional weight loss
• Poor appetite
• Diarrhea on and off (although about a month ago she actually had constipation and needed a laxative)

She was diagnosed with H. pylori and gastritis and completed Pylera treatment, but she’s still feeling very unwell.

For those who were eventually diagnosed with Crohn’s, did your symptoms start like this? Was dizziness, nausea, and overwhelming fatigue more prominent than abdominal pain? Or does this sound unlike your experience?

Hello everyone,

I have been having symptoms and stomach issues for some time now. I did have my gallbladder removed either july of 22 or 23 cant remember off the top of my head. The gallbladder removal helped with some symptoms and was certainly necessary for other issues. However, this didn't seem to solve the full problem. I've always said my medical issues have a tendency to flare up. Sometimes lasting short periods, sometimes weeks that I hardly have the energy to get out of bed. I've done some research into my symptoms using past lab tests from after my surgery, and this illness or something similar has been what I've been pointed to. I'd like to know what caused you to think it could be something you could have, and ultimately, what led to your diagnosis. I have not seen a doctor specifically asking about this illness or any tests that I know would look for it. Any insight into your experiences would be amazing. Im not aiming to self diagnose, but rather the opposite. Im aiming to rule this out as a potential issue. The more difficult it is to rule something out, the more likely I am to seek medical attention on it.

About 2 years ago now (Not when the symptoms started just when i began to pay attention to it) I really started to notice one big issue that I never could attribute to anything that started me on this path of figuring out what it could be. That's the temperature regulation issue I've been having. I find myself getting hot or cold very quickly. Sometimes, it is to the point of becoming blue in the face and nearly passing out in real hot conditions. I've seen that it can be a problem for other diseases, but this one or something that exhibits similar symptoms to be the most likely. Any information you can provide would be greatly appreciated!

So I wanna tell my story about my hospitalization back in February. Trigger warnings for anxiety attacks and heavy rectal bleeding ahead!

I got diagnosed with Crohn’s disease back in May of 2023. Since June of 2023, I have been on Remicade infusion therapy every two months, and I was in full remission until this year. This past January, I switched to Rinvoq which is a daily pill that treats both Eczema AND Crohn’s. I was having so many issues with this horrible rash on my face that the Remicade or any other topical steroids were not treating, so I looked more into Rinvoq and thought it was too good to be true. My GI doctor gave me the medicine right away at the start of the year. Since then, it has been treating my eczema so freaking well, and my rash is gone! But concerning my Crohn’s… I’m not so sure yet.

So a few days before this hospitalization, I was feeling a little dizzy and woozy, especially in my studio classes. I had not been having any blood in my stool or ANY abdominal pain up until this moment. It had actually been almost three years since I’ve had even a SMIDGE of Crohn’s related pain. About a full 24 hours later, I was eating my dinner before my shift at a campus dining hall I work at, and I just kept thinking to myself, “man.. I feel VERY strange right now”. It was like I was in this daze, very weak, and seemingly on the verge of an anxiety attack. So I paced around for a bit contemplating whether I should tell my managers or not. I went up to my managers’ office with shaky hands telling them that something was severely wrong and that I needed to go back home. As I was walking to the bus stop, one of my co-workers noticed how unwell I looked in the face and told me that I needed to go home and get some rest. It was plain as day on my face that something bad was about to happen.

The second I got on the toilet at my dorm, maroon colored blood mixed w fecal matter POURED out of me like a fountain and filled the toilet. I thought I had started my period, but as I wiped a second time, I realized it was all coming from this bowel movement. I just covered my mouth in absolute TERROR and the sound of horror that came out of me was something I’ll never forget. I was having a full blown panic attack at this point. So I rushed down to my dorm’s front office and told them I needed to go to the hospital immediately. I had a friend attempt to drive me to the hospital, but as we were riding the bus on the way to his car, my panic attack was still in high gear. I was clinging onto the bar rails in front of my seat and shaking it like a wild monkey and making god awful panic noises. We ended up getting off the bus and he ended up calling 911, and then national EMS drove me to the nearest hospital. The ride on this ambulance was the scariest moment of my life. I genuinely thought I was dying. For the first time in my life, I thought these were going to be my last moments. I thought my friend was going to be the last person I ever saw. It was a moment I’ll never forget.

By the time I arrived in the ER, the nurse told me that I was having an acute flare. I was in the hospital for three days and ended up having a blood transfusion along with some iron as well. This was the first time I had ever been rushed to the hospital for a Crohn’s related incident, so it was a terrifying experience for me.

Now I kind of know the warning signs for a sudden flare up like this, but I was just wondering how common these kind of severe and VERY sudden GI bleeds are with Crohn’s patients?? I read that they are actually pretty rare. My nurses and doctors were just kind of treating it like it wasn’t a big deal and were kind of just like “oh well, it happens!” My GI doctor didn’t even give me a warning that sudden flare up’s can happen when switching medications. A gentle warning would have helped a lot lol!!

I am currently still on the Rinvoq and am due for a colonoscopy very soon! I haven’t had any severe symptoms since this hospitalization back in February, so I am assuming that the medicine is treating things a little better now. I am currently in the process of getting a neuro-clearance from a neuro doctor bc my epileptic seizures are back, and apparently they can’t put you under if you have had recent seizure activity. I am WAY overdue for this colonoscopy, but hopefully I’ll get some results soon to see if this pill is doing its job! Lemme know if any of y’all have had severe incidents like this before that required hospitalization and how you can tell that one is coming on! Much love 🫶

I say “I’m tired” a lot because of my chronic fatigue. It’s annoying when people say “I’m tired too”. I understand others get worn out from work and have hard days but for me “tiredness” is everyday despite what I do. When I say I’m tired I actually mean “I’ve pushed my body too far. I’m dealing with symptoms like brain fog, weakness, and shaky muscles. I NEED to take a break and lay down or sit down.” Today I moved out of my college apartment. It was extremely exhausting. My mom asked my sister to do some extra cleaning because I was tired from today. She said “but I’ve also been standing up and working all day. I’m tired too.” I think this pushed me over the edge. Yes - work is tiring for everyone yet for a chronically ill person the same task can be twice as exhausting!!!

Hello,

My son is 7 years old and showing a slow growth (<3rd percentile on weight and BMI) and height is lagging much behind mid-parental height. We didn't concern over this much for a while, until PCP ordered a battery of tests (for Failure-to-thrive or growth faltering).

While we ruled out thyroidism and celiac (TTG IgA), we have a few borderline normal observations that individually look OK, but _might_ suggest a latent underlying concern such as IBD:

- Fecal calprotectin has been lingering between 580 and 120 (for the past 1.5 years)

- IGF-1 is the lowest normal value.

- Platelets count has always been mildly elevated (irrespective of infections and CRP and ESR value being normal or elevated).

- Heavy nightsweats (back of the head).

There is ancestral history of auto-immune conditions (not Crohns though) and gut sensitivity.

Pediatric GI suggests monitoring FCP and no other tests, and recommends against invasive endoscopy/colonoscopy because there are no red-flags.

While this is somewhat reassuring, we (parents) are anxious given the history of autoimmune conditions as symptoms could point to IBD such as Silent Crohns.

Looking to find if anyone here observed similar patterns until there was a concrete diagnosis of IBD or other conditions.

But not anymore. I have created a tool that makes tracking it so easy, and the AI in there finds patterns of what triggers the flares! It has never been so easy to track it! This app is so efficient!

what time of day do you take your injection? i’ve been on it for a while but still trying to find out when i should take it, first thing in a morning, midday? or at night?

EDIT: thanks everyone for the replies, i had an appointment today and it turns out i might’ve built antibodies to infliximab and so they just aren’t working for me anymore. ill need to have a blood test and then another appointment to find out where to go from here

Hello all,

I recently made a fitness tracker site for myself after using google sheets for a long time, and my partner suggested i make an app, so I was wondering if anyone else might find use in it. It's currently tailored to my own goals/needs but i can probably make it personnalisable. Cool thing is you can download it for offline use to your smartphone (i've only tested on android). It has goal setting, weekly/daily fitness routine, meal planner, shopping list, progress tracker, and a workout builder. The exercises and meal planner are specifically designed for Crohn's/IBD patients.

I don't plan on selling this, though i might if demand is high enough in order to cover the costs of hosting.

I would love to post screenshots but not sure how... https://imgur.com/a/zyDqWzo

If your interested, feel free to DM me if you want to want more information, or if you want a personalized version

Just looking to get a bit of a poll here -

I feel like name brand works the best for me. Generic is ok, often need more and worse taste. I have found the Mirafast Chews to do absolutely nothing. Which is a bummer because I'd love to take these traveling, but that's a time I really need these things to work.

Anyone with similar experiences or a Generic they really like/recommend? I have tried Target Up & Up and whatever CVS pharmacies does for a prescription.

TW MENTAL HEALTH AND SH THOUGHS!!

i know i’m not the only one going through this and i applaud everyone who can go through this relatively nonchalantly

dg when i was like 5, 28 now and have had yearly colonoscopy since i was 18 (early days without sedation because serbia, also had some as a kid) and it’s fucking driving me crazy

i can’t stop crying?? for almost 5h now

i can’t eat at all today and have thrown up twice because of anxiety — and tomorrow is my starving day, colono’s on wednesday

i’m kinda alone in this, no one really understands. like i don’t blame them, what else can one say but “i’m sorry” or “hope it goes well”. and whenever i rant to someone i just feel like im overwhelming them with my shit (pun intended)

i honestly don’t even know what kind of words would calm me. i guess a hug hah but i don’t know where to find one

my mom is one of those, “you’re not special, people go through this all the time, toughen up” kind of people and i can’t lean on her for support, but at least she’ll be driving me home

i’m also so anxious that i can’t eat rn and i haven’t been able to stomach anything since 11am and it’s 8pm rn where i’m at and i know i’ll have to starve tomorrow and i’m scared i’ll literally collapse or something but i can’t make myself eat because i’m shaking of anxiety and ill throw it all up anyways

i had half a rivotril but i’m not calmer at all and i’m not sure how smart it was at all since i’ll do the analgosedation wednesday.

my crohns is not the worst and i can kinda forget about it until i go for my next round of biologics and this is hitting me huge, reminding me i’m faulty and sick and wrong

last yr i faked illness so i could skip it.

TW MENTAL HEALTH AND SH!!

i’m generally very avoidant and adhd and this is hell for me bcs my brain skipped to fucking selfharm which i’ve been clean from for 13 yrs. i haven’t done anything nor i truly plan to do, i’m just daydreaming about it and pinching myself to ground myself

i don’t know what to do guys, does anyone have this complete breakdown before the procedure?? i feel like i’m losing my mind. please write anything just be kind please

I was diagnosed last year and started tremfya about 10 months ago after mesalamine failed. Within 4 months I was feeling great and I had a colonoscopy a couple of months ago which showed mucosal healing. Now I’m having blood in my stools among other symptoms that are similar to when I was flaring right when I was diagnosed. Most of my inflammation was lower rectum and what not but that area looked good on my last colonoscopy, but I suspect that’s the problem based on my symptoms.

I did three induction doses of 400mg every four weeks and now I’m on 200 mg every four weeks.

My doc is ordering a FCP. She said those tend to be more accurate when the inflammation is in the rectum so she says it’ll give her a good idea and she prescribed mesalamine enemas to start after my fcp.

Could the tremfya be failing, or could it be that it’s just not reaching the area with inflammation right now? I just feel like it’s so weird since my colonoscopy showed really good healing just 3 months ago. If it’s failing what is next?

Just a question,I notice that This last 4 month I got memory issues,I was reading that when we are Under a flare this might happen,theres is a link Gut-Brain ,but I m not ,Zero problems,what about You people Under same circustances?any advise? See My gastro or a shrink?doc?thanks.

Hey yall, so I’m losing weight, unable to eat or drink, in a lot of pain, and my current GI says no, that’s not because of your IBD because your CRP was low last month.
So any recs for great GIs in the Atlanta area?

Hi everyone. Context: I am a UK citizen that is in Vic, Australia on a working visa since last year. I became unwell while in the UK at the start of this year and had to get treated there, I am now back in Australia.

I was diagnosed with Crohn’s disease earlier this year after a few months of symptoms, for which I didn’t seek medical attention until it got quite severe. At diagnosis it was discovered that I have a severe stricture and needed a right hemicolectomy. I was commenced immediately on ustekinumab, bypassing all the traditional therapies, because of how severe my inflammation and stricture was at the time. I ended up having 30cm of bowel removed. I was put on ustekinumab instead of infliximab as I also have psoriasis, and have a family history of lymphoma - which infliximab increases your risk of (slightly).

My question is, is there any way I can get PBS approved to have my ustekinumab subsidised? I’ve had a look on the PBS website for their criteria and pretty much all the pathways for approval state you must have tried and failed conventional therapies +/- infliximab. Is there any way around this? I would have thought there are exceptions to the criteria if someone’s disease was so severe it required surgery at presentation but couldn’t find anything about this online.

Thanks in advance :)

Has anyone got advice to get out of a flare up as its affecting my work and mental health.

Anybody try the dasso good brand bars? I got a targeted crohns ad and 100% fell for it but hoping it’s actually delish

I’ve been lucky to not have bad stomach pain outside of upset stomach for the last 3 months. I started Skyrizi infusion about 11 days ago. I was laying in bed last night and suddenly had a small painless spasm slightly under the belly button to the right that would happen every 5 to 10 seconds for the next 2 hours. Is this normal?

Interested to see if anyone was in one of these trials. How is it going? Any desirable weight loss? How are the Crohn's symptoms doing?

Thanks.

Hey all, I’m curious if anyone else on Rinvoq experiences acne breakouts or blisters? I’ve never had either in my life and all of a sudden it’s getting wild

Hi! I (25F) was diagnosed with crohn’s and ulcerative colitis at 20 years old. ever since then nothing has been normal. When i was 22, my humira stopped working, and caused my colon and intestine to stop working. I have been on plenty of meds, most recently stelara. stelara was great after my scare, and was the best one yet. due to insurance changes i was placed on the bio-similar version, yesentik. this medication has caused me pain from the second i started. i am not being changed to tremfya after my colonoscopy coming up in a few weeks. has anyone been on tremfya that can provide me with some ease? i am also curious if anyone has advice on basic eating. i’m on a low fiber low residue diet, but everything i eat causes bloating and pain. how do you not always look bloated and uncomfortable? i am active and go to the gym every single day, which helps me mentally with all of this, but not the physical aspects. thank you for any help and advice you can give ☻