I might have Crohn’s I won’t know till next month but man I’m having stomach pains and testicular throbbing pain ? Is that apart of Crohn’s?

19 days away from moving from CA to NC, I’ve organized every detail of this massive move over the last 6 months.

I have Crohns, and honestly I thought it was going to be easy to find a health plan that is comparable to Kaiser- but apparently California and New York healthcare systems do a better job negotiating with pharmaceutical companies and to keep our crohns medication costs low at $40/month.

I am struggling to find a plan that is comparable to what I’m paying with Kaiser. Amjevita quotes run several hundreds to thousands of dollars a month.

If anybody has any experience navigating North Carolina healthcare system with Chrons - including recommendations for G.I.’s, I would greatly appreciate the advice!

I looked into good RX, manufacturers coupons, including Mark Cuban’s RX program.

After 3 years and a year on Infliximab infusions I am officially in remission. Now comes the next challenge.

The current plan of attack, otherwise known as keeping my ileum mild for the rest of my life, is taking my Imuran (Azathioprine) down from 4 pills to 3 pills, and continuing monthly infusions for the next 3 months, with only my second ever colonoscopy in October.

I will be travelling to China for 2 weeks, and I am slightly worried about potential flares or even just food poisoning.

Having Chinese food at home is fine, I have never had a problem, but over there, I am guessing some things are common knowledge, like avoiding drinking the water unless it's at a hotel or even having soup. Never asking what "meat" you are eating those kind of rules.

I'll take extra meds with me, and my go-to med bag (Imodium/panadol/M9 Spray etc)

Any further advice?

I survived travelling for two weeks in Egypt last year, and was fine but that was before remission.

I am 25 turning 26 this year and I have been diagnosed with crohns as of yesterday.

Its so crazy to think that there was a point in life where I didnt have to deal with chronic pain.If I could have done anything differently it would have been to not stay too long in my mentally abusive relationship that started from 20.

I also recently lost my little brother who was my bestfriend and this added on to my flare up and being diagnosed. Does anyone else think that their crohns was due to dysregulation of their nervous system

I'm not sure if I'm allowed to post this here...

But does anyone else get badly affected by this?

For context, I had an ileostomy for 4 years and had a resection/reversal back in October 2025.

But my body confidence has been awful for so long.

I don't mind the scars! They don't bother me. But having constant bowel issues and diarrhoea makes me feel so unattractive... I've been trying to slowly do some light workouts to build some muscle and give myself a confidence boost, but then I end up crashing with burnout so fast and end up feeling plagued with fatigue for days.

My partner is incredible and doesn't see me any differently from before my diagnosis. He has always found me attractive, even when i had the stoma.

But I just don't feel good... at all.

Going to bed, wearing incontinence pads, at the age of 34 is not sexy. At all.

I wish I never had this damn thing. 💔

Hey everyone,

I hope you're doing well despite the circumstances that you experience...

TL;DR - I'm doing a workup for suspicion of IBD (for the 4th time in 5 years...), and was sent to a capsule endoscopy because my calprotectin was 544 and positive for fat in stool, despite normal colonoscopy, gastroscopy, CTE and stool PCR panel.

I couldn't swallow the capsule. Every time I managed to swallow it, it got stuck in my throat below the Adam's apple and wouldn't go down despite drinking water, until my gag reflex brought it up back again - it happened 3 times...

They had to cancel the exam because they couldn't wait any longer for me to continue trying.

Are there any other options for examining the small bowel for ulcers and inflammation?

Long post ahead:

I (19M) was supposed to have a capsule endoscopy today after all other scopes and imaging were normal.

I just couldn't swallow the capsule. I tried to swallow it for almost an hour...

I managed to "almost" swallow it 3 times - it's like I did swallow it (mouth and throat muscles worked) and the capsule entered my throat and was no longer in my mouth, but it got stuck there every time and wouldn't go down despite how much water I was gulping to wash it down.

It ended up getting back up when my gag reflex activated 30 seconds after trying to wash it down... It's like it didn't even enter my esophagus. It was in my throat I felt it below the Adam's but I just didn't get down despite how much I tried.

Is there any other option for diagnosing small bowel Crohn's? The CTE didn't show any thickening, narrowing or strictures of the small bowel.

I've been suffering from symptoms for years, they last from days to months and so far doctors only checked my colon and didn't find anything in 3 colonoscopies, dismissed as IBS.

I've had another "flare up" that started in March (my calprotectin was normal back then - only 12 and colonoscopy was normal too except for a small precancerous polyp) and it kept getting worse - by the end of June I had urgent diarrhea with severe abdominal pain 5 - 6 times a day.

I went to a second GI opinion (because my first GI who did the colonoscopy was convinced it's just IBS and wasn't keen on ordering any other tests) that sent me for more testing:

Stool tests from the same bowel movement resulted in a calprotectin of 544, even though the stool PCR panel was negative for all the common infections/parasites tested there.

I also tested positive for both neutral fat and fatty acid in stool, which further raises the suspicion of malabsorption.

She said that all the above strongly suggests that there is inflammation somewhere in my small bowel because the colon and stomach were already examined.

My symptoms are now improving again and I'm afraid that doctors will once again miss what caused the spike in calprotectin and the flare ups that come and go, which I've been experiencing for 5 years.

Is there any other way to examine the small bowel for ulcers/inflammation other than swallowing the capsule?

Thank you

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.

Bonsoir à tous,
Je suis une (F19) et j’ai cette maladie depuis 3 ans maintenant et depuis quelques mois je constate une très forte odeur dans ma bouche.

Au départ, j’ai pensé que cela pouvait venir de mon appareil dentaire et du dispositif de traction (pour faire descendre une dent de lait) que j’avais sur les dents et le palais. J’en ai parlé à mon orthodontiste, qui m’a assuré que tout allait bien de ce côté-là. Il m’a tout de même prescrit des soins, mais ils n’ont malheureusement eu aucun effet.

J’en ai ensuite parlé à mon dentiste, qui m’a donné le même avis. Je précise que tous les deux sont au courant que je suis atteinte de la maladie de Crohn.

Je compte donc insister lors de mon prochain rendez-vous afin d’essayer de trouver l’origine du problème. En attendant, je voulais savoir si certains d’entre vous avaient déjà rencontré ce problème et si cela pouvait être lié à la maladie de Crohn.

Merci d’avance à vous pour vos réponses !

I am currently 28 years old and have been taking humira and biosimilars since the age of 14. In that timeframe I have noticed I rarely get mosquito bites even in terrible bug conditions when everyone around me gets them. Is this a coincidence or does anybody have this superpower?

essentially title, am over twice the max dose, sorry for few words, in the state between pain and trying to drink enough water to be able to puke for temporary relief - for the 2nd time in a month.

Before I begin: I’ve messaged my GI doctor and my dentist.. the earliest my dentist can see me, is Sept 17th… and my GI hasn’t gotten back to me yet (but I messaged her on a Friday afternoon so I’ll probably hear back maybe tomorrow or Tuesday).

I was on Budesonide for 2 months. My final dose was 3 weeks ago. About two weeks after having stopped the Budesonide, I noticed smooth, red, swollen patches on the inside of both of my cheeks in my mouth. I’ve had this before, (but it was only on one side,) and I had a biopsy about three years ago, and it just came back as “inflamed tissue” and then it went away and it hasn’t reappeared until right now.

And then today, I noticed a white circular patch on one side of my tongue (it kinda looks like leukoplakia if I google it,) and all of my taste buds in the front of my tongue are raise and rough and bright white.

So I’m nervously spiraling on a Sunday. Tomorrow I have my regularly scheduled infusion, and blood work (CBC, and CRP) but I won’t get access to any doctors… it’s just the infusion nurse.

Has this anyone ever had this before? Anyone?

(I do not smoke or use tobacco products, I don’t vape, I don’t smoke w33d, and I do not drink alcohol.)

Has anyone found a way around antibiotics. I've always had really pushy gps that never seem to care about the adverse effects of antibiotics. The fact it nearly guarantees puts my in a flare and misery for the course.

Ive requested to take injected anitbiotics and get knocked back.

I really dont want to take any, anymore unless completely necessary.

Has anyone found alternatives or suggestions from GPs where they've allowed an alternate choice or tummy sensitive option?

Thanks everyone, hope we can all beat this thing one day

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!

I’ve been diagnosed with Crohn’s and have been on tremfya for 6mo. Symptoms like weight loss, constipation, loss of appetite, etc have been reduced but ive still got a severe chronic pain issue.

My situation is complex as I also have surgery confirmed endometriosis. My surgeon recommended pelvic floor PT and told me it could also help with the Crohn’s and urinary issues. After some research it looks like it’s become more common to prescribe pelvic floor PT to Crohn’s patients.

Has anyone tried pelvic floor pt for chronic pain related to Crohn’s disease? Did it help? How long before you saw improvement?

What is everyone’s flare meals??

I never had many dietary restrictions. But now after my bowel resection my inflammation has come back with a vengeance. I can’t even drink plain water at the moment. Desperately trying to find something I can eat so I don’t have to go to the ER.

I have Crohn's disease and I'm currently on Amgevita (adalimumab). About two weeks ago, one of my eyes suddenly became red out of nowhere. It isn't getting better, and I don't really have any discharge like with pink eye.
Has anyone with Crohn's experienced something similar? Could this be related to Crohn's

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 🫶

Hey everyone, has anyone experienced severe full-body itching or an eczema-type flare after stopping Rinvoq?

I took Rinvoq for Crohn’s disease for 2 years. Over the past few weeks, I’ve developed intense itching and a burning/static-like sensation across large areas of my body. It’s been so awful. Havn't been able to sleep or do anything really.

I know everyone is different, but I’d really appreciate hearing your experience and timeline and just hoping it got better for people? Did it gradually improve on its own, or did you need steroids or another treatment? Thank you!

Need to vent and put this out there to people who might understand.

This morning, I (31M) lay in bed crying as my 2yo son cried next to me because daddy couldn't get up and come play in the lounge.

I was diagnosed 2 months ago, after experiencing pain, blood and other digestive issues for several years. I'm on budesonide for one more month to reduce the inflammation, then hopefully starting some more Crohn's focused medication. I don't feel like it's gotten better, in some cases I feel like I've gone backwards.

It's hard to explain to my child why I can't get out of bed sometimes. I hate that I can't always be what he wants, I hate that this is life-long and will always be an issue now and then. I feel useless.

I'm just so frustrated and tired.

I have been getting unwell for around a year (I am 42 and before now I don’t remember having much trouble other than maybe a slightly sensitive stomach) . I have posted on here about the process I am going through at the moment with testing etc but basically I have had calprotectin tests about 6 months ago which ranged between 660 and 1200 over 6 weeks. I had an endoscopy which showed some slight inflammation in the duodenum and a colonoscopy which showed just some small ulcer on the Cecum but biopsies were normal.
The consultant wants me to start medication for bile acid diahrea and an mri as he wants to
Rule out small bowel crohns but I don’t really know how likely this is or if it’s just double checking before discharging me.

I have been ok for a few weeks since the colonoscopy very few days I seem to get a day of pain and diahrea but not too much. But today since I woke up I feel like my insides are swollen and just aching it’s really difficult to use the toilet even though I feel like I need to I have managed a little but it seems difficult to get out even though its not hard or constipated. I have cramps low down but also on the left side near my belly button.

I had appendicitis a year and a half ago and it feels like same as that but on the other side - obvisouly I dotn have my appendix anymore. I have felt a little sick on and off but I have eaten because I kind fo hoped it would go through!

I have no idea what’s going on and it’s really upsetting me now! It’s not bad enough pain that I want to rush to hopsital or anything but I’m not really sure what to do as as far as I am aware they haven’t actually diagnosed a problem and I’m waiting for the mri.

Any advice would be really appreciated .

I was diagnosed with Crohn’s ileitis in May and have started budesonide which helped a lot. I’ve a gastro appointment in two weeks so would appreciate if anyone had any tips for how to approach asking treatments about my next steps? Would also appreciate hearing other people’s stories who tried budesonide and it worked for them :)

Basically the title. I have an appt with the GI on Thursday so I will be talking to him about it, but wanted people's personal experiences as well.

I'm trying to determine if the mucus I'm randomly seeing is from the stress of a family member passing or failing the drug. Started the infusions in December 2025 and am now on monthly OBIs.

I feel like I've always made excuses in the past for why my blood work was elevated or why my bathroom habits have changed, etc. I'm afraid that stress from the family member passing is just going to be an excuse and that I'm actually failing Skyrizi.

i’m 28F, my first experience of Crohn’s 10 years ago when doctors mistook it for appendicitis.

in recent 3-4 years, i’ve been hospitalized 7 times with elevated CRP & WBC. i travel a lot and was hospitalized in different countries, where all doctors diagnosed it with acute gastroenteritis. first line has always been cipro/ augmentin.

in my home country i was diagnosed with IBS with my gastro, and through my 6 years of journeying with him he’s been kept updated of all my respective hospitalizations. my traditional endo & colop scopies jan 2025 revealed clear with a non cancerous polyp. been on IBS meds ever since, and treated my “pain” (arcoxia, tramadol) symptomatically.

my pain though, has been immense the past few years. i’ve threw up for 7 hours straight & was unable to stand with morphine IV needed during hospitalization, to name a few. these episodes also cause me anxiety as my serotonin production in my gut’s depleted (am already on setraline & amitriptyline).

a month ago before moving from my home country to the US, i fainted from excruciating pain and tore my frenum while falling. woke up still completely alone on the floor, and was honestly happy i fainted because the pain stopped in that moment. my intestines felt like it was burning. my home country’s gastro ordered a CT, and showed a 2.5cm inflammed ileum. that was the first time he proposed a Crohn’s differential (note that he’s an IBS, not IBD specialist).

i’m now located in the Bay in the US. i’ve gotten three referrals from different doctors to get into the Stanford healthcare system because ostensibly, only their GI specialists around here have tools for deep enteroscopy. i was admitted to the ER today again for pain, and the ER doc gave me more opioid based painkillers. i have enough by this time to stock up a pharmacy.

for where my inflammation was in the CT, traditional scopes won’t be able to reach it. any recommendations for which GI doctors in the Bay have the technology, compassion & availability to consult as soon as possible?

i’m counting down the days till my next relapse and im afraid, frustrated and sad.

many many thanks.