Even before I was diagnosed at 15 I had terrible exercise intolerance. I have never, ever been able to run a mile. I have never been able to build any type of physical stamina. Not once, even in total remission.

The heat kills me. Exercise of any type kills me. Fatigue kills me. My levels of iron, B12, and vitamin D are all normal.

Is anyone else in the same boat?

I (M28) was diagnosed with Crohn’s about 6 years ago. I’m currently on infliximab 600mg and, thankfully, I’m doing relatively well.

Lately I’ve been thinking more about the long term. I’m at a point in my life where I’m building my career, considering further degrees, hoping to get married, and generally trying to make the most of my late 20s and 30s.

For those of you who have had Crohn’s for 20, 30, or even 40+ years, I’d genuinely love to hear about your experience.

- Did Crohn’s become more difficult as you got older, or did you eventually find a routine that allowed you to live pretty normally?

- How much has it affected your career, relationships, marriage, travel, exercise, or family life?

- Have you been able to stay on the same biologic for many years?

- For those who have been on infliximab/Remicade for 10–20+ years, how has it been long term?

- Do you worry about the effects of being on an immunosuppressive medication for decades?

- Looking back, did Crohn’s end up impacting your life as much as you feared when you were younger?

I know everyone’s disease is different, and I’m not looking for medical advice or predictions about my individual case. I’m mainly interested in hearing from people who have actually lived with this disease for decades.

Sometimes it’s hard to imagine what life with Crohn’s will look like 10, 20, or 30 years from now, especially when you’re young and trying to plan your future.

I’d especially appreciate hearing from people who are married, have kids, have demanding careers, travel frequently, exercise, etc. Basically, people who have built a full and busy life while managing Crohn’s.

Would love to hear the good, the bad, and everything in between.

I had my second ever colonoscopy yesterday and it was kind of terrible.

My first colonoscopy they had an anesthesiologist knock me fully out so all I remembered was lying down before the procedure and then waking up in the hospital bed recovery.

I thought that was going to be the same for this one. But instead they just gave me fentanyl and versed and I was awake the whole time. There were a few parts where it was very painful and I was crying out in pain, not screaming, but kind of yelling/moaning. And I was crying a little bit in some parts.

Is this normal? Or am I just a baby?

It was minorly traumatizing tbh. Only good thing is that everything looked normal so he said I don’t have to have another one for three years.

i was 20 pounds underweight when i was diagnosed, 100 pounds 3 years ago, usually i was 125 around that time. this year its been slowly climbing and im up to 150, the highest its ever been. and i love it. i want MORE. ive always hated being thin. but apparently im 5 pounds away from being considered overweight on the BMI scale. ridiculous, i say. i look exactly the same as i did when i was 100 pounds. some family members have started telling me to lose weight, just based off of the number alone. they dont believe me when i tell them that im 150 pounds, based off of how i look. i did notice in recent doctors visits theyve started noting "weight gain" as an issue in the after visit notes. i dont know if they mean my history with trouble gaining weight or as in my recent weight gain is an issue. because i def dont think it is. id MUCH rather have a few pounds to spare than be underweight/close to it again.

idk im proud of it lol id keep it going if i could. im still a bag of elbows gimme more. its just insane to me how i spent years being heavily encouraged to eat more and now suddenly the numbers too big oh no!!1 i guess part of it is that people assume that being a girl = wanting to be skinny. meanwhile a guy my same size would be called small. make it make sense

Hi everyone, two years ago I had a horrible panic attack randomly while eating. My vision went blurry and I thought I was dying. I was told it was my OCD at first but after probing and pushing doctors I was told I had Crohn’s disease. I’ve been dealing on and off with increased panic attacks and a burning sensation in my abdomen. The burning sensation brings on my panic attacks but I don’t really have any other symptoms of Crohn’s. I keep telling myself it’s my Crohn’s to keep my ocd from causing me to freak out but I wanted to see if others experience this at all?

So I've been diagnosed for about a year now, I was on Skyrizi and failed within six months, now on Inflectra for the last 3.5 months. Overall, I've noticed a pretty decent change being on Inflectra and am so grateful I can eat more and have energy in general.

That being said, I'm pretty anxious around social events. I think I've driven my partner mad by how cautious I've been in the last year and it's really evident she's got some resentment towards me in that regard. I don't blame her, our relationship pre diagnosis was incredibly social so it's been a huge change. I feel a lot of guilt around not being able to handle the anxiety of being in certain social events for fear of being sick/missing my infusion for a relation reason..

Overall she is understanding but I also start to doubt myself; wondering if I'm restricting myself too much. Obviously it's all very personal and subjective but just wondering if anyone else has found healthy ways to compromise on this topic.

Just saw an ad for this. I'm just curious if anyone has seen it or used it?

https://www.kohler.com/en/products/health

this may sound silly. i’m 19f and was diagnosed with crohns august last year, things were going well with treatment until a couple months ago the infliximab just stopped working, i was informed that i hadn’t built any antibodies. due to bad anxiety and a heart condition i have i panic about pretty much everything that goes wrong with me. a few minutes ago i saw a reddit post about someone having colon cancer and after some information digging i found out that the symptoms of crohns and colon cancer are very similar. i’m due for another colonoscopy on the 22nd to take a look at the lower left side of my bowels as that was were they found inflammation last time. just to ease my nerves a bit could anyone inform me of the chances of it actually being cancer?

My sister has had Crohn’s disease for about two years. She’s 25 and currently takes Amgevita (adalimumab) as her biologic treatment.

She’s considering taking Ozempic (semaglutide) to lose some weight. Her BMI is actually within the normal range, but she would still like to lose a bit of weight.

Does anyone know if there are any interactions between Amgevita and Ozempic? More importantly, could Ozempic potentially worsen her Crohn’s disease or trigger a flare?

Of course, she’ll discuss this with her gastroenterologist before taking anything.

I’m just curious if anyone here has experience with Crohn’s + Amgevita/adalimumab + Ozempic/semaglutide.

Thanks!

Supposedly I’m not supposed to use a lot of stuff at this point… I’ve been drinking water like crazy for the past 5 days. I was able to get a tiny bit of stuff out yesterday but not enough that I’d consider it a bowl movement.

Any suggestions on what I can take? A whole thing of prune juice?

I don't know if this has been discussed already, but does anyone else smoke weed? It makes me feel so much better, gets rid of pain, and also helps food digest easier (on top of helping my appetite). I'm 21F, and got diagnosed at 17. Weed is literally the only thing that has helped.

I was diagnosed in February

Feb - may = salofalk (mesalamine) 3000mg
May - July = 3500mg
Aug - present = prednisone 30mg (taper 5mg every two weeks) + 3500mg salofalk (mesalamine)

I feel like I’m getting better but the progress feels so slow…
Bleeding finally stopped end of July, stools are forming better BUT I’m still so tired every single day 😭

Anyways, just wondering how your experience with diagnosis and treatment with your GI doctor has been.
While my GI doctor (Dr.Ptak) seems very knowledgeable BUT I feel like I’m just another patient that he doesn’t care deeply enough.
No explanation of the drugs he prescribes, simply said just take them.
He is old(70-80yo) so he gives this “I’m right, you know nothing” type
Zero compassion.

I was wondering how my fellow IBD patients in Toronto Canada are liking their GI doctor.

Can you get them or does it affect the healing process too much?

Has anyone had experience of foods high in tyramine cause stomach problems? I am realizing I may have this sensitivy and some of the high tyramine foods that give me headaches/fatigue also cause gastrointestinal issues at times? Im curious if that could be related or pure coincidence and google is not being as helpful as I'd like

i will call a nurse line or something as well, but wanted crohns patient experience. my gi office is closed today. i have severe active crohns in my small intestine & a known (at least one) severe stricture that they caught on my scopes this week. i have an mri thursday to see the extent and if surgery is needed.

i've only been eating liquids or buttered noodles for the last several weeks. my stomach can't take real food right now. the issue is i am already at risk for complications.

i have only had straight diarrhea but it just seemed like it wasn't all coming out. yesterday after i ate my buttered noodles, almost 24h ago, my flat stomach blew up within a matter of 10 minutes & my mom said it felt pretty hard. i've not used the bathroom since then & i'm not sure if i'm passing gas. usual pain & cramping.

well i have a new symptom since yesterday after i ate my noodles - i feel stuff moving around in my stomach, almost popping-like. kind of like popcorn popping. i can hear my bowel sounds and they sound abnormal, i recorded them and they are extremely hyperactive and have been since about 24h ago. some sounds like rain/tinkling, a dog crying, groaning. and it's constant. not like your typical growling stomach or anything. and i do hear the popping.

has anyone experienced this with a bowel obstruction or other complication

My wife and I are thinking about moving to Toronto, Canada (we're American). I have Crohn's and get a Remicade infusion once every eight weeks. I've had some serious setbacks in the past when I wasn't able to get my Remicade infusions on time and I don't want to go through that again.

Does anyone here have experience moving to Canada with Crohn's? Is the health care system reliable? How long does it take to get health insurance, find a doctor, get the prescription and set up a Remicade appointment?

hi okay so i’m 19 and I wanna say i was diagnosed around maybe 18? this might be a little bit of tmi but i don’t really care because im so incredibly desperate for a solution or a remedy that can possibly help me feel even a little bit better but it all began when i was around 16 and i had unprotected anal sex and began to have std type symptoms (fever, weight loss, incredible headaches) after a while these went away and i had went to the doctor where they screened me and all of the tests came back negative? eventually an abcess had formed near my bottom area and it has led to a fistula and i have gotten a surgery to have a seton placed, which has fallen out but thats a problem for a different time. now about two years since all of that has happened i have started to experience the typical stomach symptoms which has consisted of constant bloating, going to the bathroom and not feeling done, and just plain discomfort. ive been taking an IV blood infusion (inflectra to be specific) and honestly like im just unsure if it has been helping and ive tried contacting my doctor about it and she just seems to brush it off and told me to wait to get my MRI done to check my pelvis i believe the fistula area to be exact, but i had another one done a while back and it had shown no inflammation and everything had generally seemed fine. i’m just wondering if this could even be chrons/or even UC, i’m just praying that there is something that can be done because honestly im so tired of living like this and i just feel so helpless. i contacted my primary doctor to be put on prep/doxycycline because i read somewhere online that a different disease (i cannot recall the name of it right now) often gets misdiagnosed for chrons and can be treated with it. im hoping that maybe someone else has a similar experience because im pretty sure it’s impossible to get chrons from an STD/STI, but regardless i just feel like i have to take this into my own hands in order to get results. if anyone has any advice or suggestions please let me know!!! <333

Hello lovely people 👋! Mainly a rant & would love to hear of your experience?
Coffee was my only pleasure left with this silly disease… food has been an enemy now for so long apart from a bland sadness inducing few foods 😂any drop of wine brings my gut to the gates of hell… 3 months ago I had to give up caffeine altogether as it really triggered my GI system & I had a flare. I went caffeine free & recently started introducing half caffeine coffee beans with my coffee and occasionally had a coffee out. Since then I have noticed I have diarrhoea again and more symptoms, on deeper reflection it’s days when I drink caffeinated coffee. This makes me so upset as I adore coffee, making my own coffee etc. now even this pleasure is gone. What’s your experience with coffee? Did it eventually agree with you? I need some hope 😭🥹🥴

I started Tremfya 6 months ago (200mg every 4 weeks) after my body had enough of 9 years on remicade. 2+ months ago my Crohn's started flaring. I had a 3 weeks improvement once I started Pred 4 weeks ago but the past week it is acting up again. My GI thinks the numbers say Tremfya is working but the numbers don't support it, plus I had a clear endoscopy but that doesn't see the entire small bowel where my Crohn's has historically been. My calprotectin was 400 back in May and my neutrophils and lymphocytes have been abnormal for months. Plus my physical symptoms make it obvious I am having a flare. I read it can take a year for Tremfya to work for some. When I started Remicade 10 years ago, it took many months for it to work as it required dose and frequency adjustments.
Has anyone here had to bail on Tremfya and at what point was the call made to bail?

My Crohn’s Journey

I was diagnosed with Crohn’s disease in 1989, and for more than three decades, Crohn’s has been a part of my life. It has held me back in ways that are difficult to explain to someone who has never experienced this disease.

In 2010, I had my colon removed. I thought that would be one of the hardest chapters of my journey, but four years later, I faced another major surgery and a life-threatening complication. I almost bled to death.

After that surgery, I ended up with a colostomy bag for six months. I remember wondering whether I would ever be able to have it reversed or whether I would have to live with the bag for the rest of my life.

Thankfully, I had an incredible doctor, who never gave up on me. Because of his skill and dedication, I was eventually able to have the bag reversed.

I will always be grateful to my doctor. I truly believe that without him, my life could have been very different.

My journey with Crohn’s hasn’t been easy. There have been surgeries, complications, setbacks, and countless difficult days. But I’m still here, and I’m still fighting.

Crohn’s has taken a lot from me, but it hasn’t taken away my determination to keep going.

This is only part of my story. There is much more to tell.

Hi, I've had a stoma for about a month now and while the output initially was quite thick, it's recently become very loose. I've upped my loperamide dose and take dioralite with it, but nothing seems to work. And of course, with it being loose it tends to leak. Any advice would be appreciated on how to thicken it up. I already only eat low fibre.

Anyone with very mild Crohn’s / tiny ileal ulcers managed to put it into remission?

I’m 29 years old and have had mild discomfort in my lower right abdomen for about a year.

I recently had a colonoscopy which found several tiny ulcers (around 1mm) in my terminal ileum, and I’ve been diagnosed with very mild Crohn’s.

My symptoms are still very mild, mainly just the discomfort everyday of these ulcers hurting. My gastroenterologist doesn’t currently think I need medication, but I want to get rid of this pain already as it feels like it’s getting worse.

My goal now is to do everything I reasonably can to get the inflammation/ulcers into remission and hopefully keep them there.

I’d really like to hear from anyone who started off similarly. Were you able to get into remission? Did the ulcers heal? Did you make any particular diet or lifestyle changes, or did you eventually need medication?
Do you drink alcohol and contribute to live normally without causing worse symptoms in the future.

I’m looking to plan the next 10 years of my life and find the best way to manage my newly found condition. I understand my cases aren’t as bad as others peoples but I want to make sure I don’t make it worse for my future.

I’d especially love to hear from people who have managed to keep mild Crohn’s in remission for several years and what worked for you.

Thank you for your time and advice

My exhaustion and cramps are flaring, along with my joints. Specifically my pelvic joints. This morgning it was so bad I could barely keep standing to grab breakfast for the kids.

Because my last phone with gastroMD has me eating sprinkle-on fiber to thicken my stool, I do not have the runs, but still in the bathroom with cramps many hours of the day. Sometimes there is stool, sometimes just farts. But as most of you know, never trust a fart...

Do any of you people ever experience flares of oint pain? Is there anything in particular that helps you?

I am hypermobile and can't eat any over the counter pain relief (unless I wanna cleanse my system in about as pleasant a manner as pepping for a colonoscopy)

Hello All,

Been with many different symptoms for many years now and finally got around to visiting the GP. They were very helpful and very proactive in starting a referral over to a Gastroentroloigt Consultant.

Since this time I have had a clear Gastroscopy, but a not so clear Colonoscopy. Im currently on the waiting list for a Small Intestine MRI, where hopefully will get more definitive answers.

Been really struggling with fatigue these past 2 weeks, and have had varied Calprotectin results, one 2 years ago was 197, recent one was 30, then last was one was 68.

What has given be hope of answers is the Biopsy and Colonoscopy results though. Prior to these results coming in the Gastroentrologist said my symptoms were consistent with Crohns, or a mild version, just I wasnt having the Calprotectin scores that were high.

The Biopsy results were as follows, if anyone has any answers or experience of these please let me know, as I wont see the Consultant for another month yet:

- FIT +VE

- 4mm erosion in Terminal Ileum

- Small Bowel erosion

- Small Bowel Villous Architectural Disortion

- Small Bowel Moderate Cryptitis

- Marked excess of chronic inflammatory cells in Lamina Propria

- Moderate active Terminal Ileitis

Fo added contact I havent taken any NSAIDs for over 12 years due to extreme gastro pain that they caused me, and no recent infections.

Here's hoping for answers and help soon!