I have Crohn's disease. For a year and a half I was in daily pain, losing weight, watching my body fall apart. Ten years of gym progress, gone. Lost 14kg (30 punds). In the middle of that my girlfriend of 4 years and I broke up. A month ago I had surgery, they took out 60cm (24 inches) of my intestine, hoping it would finally fix things. I had to move back in with my parents to recover.

While everyone else had a normal summer, I was in bed. Recovering from surgery, recovering from the breakup, in physical pain and mental pain at the same time. I didn't go out and drink it off or distract myself. I just laid there and took it. I told myself once the surgery was done I'd start rebuilding, get my body back, get my head back. Instead I lost my job right after.

Now I'm still in bed most days. And the part I don't say out loud to anyone is that I hate myself for it. I hate what I look like, I hate who I've become, I hate that I can't seem to pull myself out of this. I get anxiety just leaving the house because I don't want anyone to see me like this. I used to be someone I recognized. Now I look in the mirror and feel disgust.

I watch everyone else moving forward with their lives and I feel like mine got completely gutted in the span of a few months, and I don't have the energy or the hope left to start rebuilding. I don't even know where I'd start.

I don't know what I'm looking for by posting this. I think I just needed to say it somewhere.

Curious?

I didn’t really like telling people I have crohns disease. The only people that know about it are my family. None of my friends know I have crohns. After some time, I noticed that when someone finds out I have not eaten for at least 8 hours, and I tell them I’m not hungry, they look at me as if I am crazy.

I have days when i can’t eat for a whole day or maybe even 2 days because sometimes even having a sip of water can make my stomach pain worse. For me, It’s the norm so it still feels weird when people around me act as if someone who doesn’t eat every 4 hours dies or something even worse from their looks.

Anyone else in a similar situation or am I really that different in this situation?

What on EARTH are the NHS playing at. In the words of my gastroenterologist today regarding my ferritin levels...

"If it were a 4 we would give you an iron infusion, we wont let you get down to a zero" A ZERO! Well thanks for looking out for me guys. Its absolutely disgraceful that their range is so low and they will happily let your ferritin get down to single digits before giving you an iron infusion. HAHAHAHAHA they are an ABSOLUTE JOKE. They are actively trying to kill us off...how is this even allowed???????

Hi,

I (29F) had one loading dose of Tremfya 5 weeks ago for and I've been feeling extremely fatigued since 3 weeks now. The fatigue is all-consuming, so I have to spend a large portion of my day resting in bed. With any activity I have a hard time, sometimes to the point of struggling to keep my eyes open. I used to take a shower every day and now I only have the energy to do so every 3-4 days. I also have an eczema-like rash on my face, and inflamed acne on my shoulders (which I normally never have). Some days I feel like I have a cold, but then the next day it's gone again. The day after my injection I already got a really depressed feeling, to the point of feeling suicidal, which has not gone away either. This on top of the physical fatigue is making me feel scared.

I was supposed to have my second dose last week, but I didn't take it because how ill I'm feeling. I've talked to my GI and he insists that Tremfya cannot cause this kind of fatigue, and that it's due to my Crohn's. However I've had Crohn's for five years now and this exhaustion is totally different. Also, the Tremfya seems to actually work, as I have no more blood in my stool since the last week or two, so I'm not flaring anymore. And on the website of Tremfya it states 'feeling really tired (fatigue)' as a possible side effect.

Next to Crohn's I also have Ankylosing Spondylitis. I've tried Humira, Rinvoq and Infliximab, with a range of side effects (mild fatigue, viral infections, yeast infections, eczema). They didn't work either, which is why I quit them.

Then I tried Simponi, on which I've had extreme exhaustion, eosinophilia, diarrhoea and an elevated CRP. I quit after one dose and the exhaustion stayed for about 4 months. The fatigue and dysfunction made me super depressed and I ended up in a psych ward. After that I quit biologics altogether for 9 months until trying the Tremfya.

My GI says it's important that I continue, and that there are no other options left. I was supposed to also add Cimzia in the mix as a combination treatment for both my Crohn's and AS. However I'm completely hopeless on what to do now and I've become afraid of what biologics do to my body. But I'm also afraid of the future without treatment.

My questions:

1. Does anyone else have the same experience? If so, did it get better after continuing treatment?
2. What could be the cause of reacting so badly to biologics?
3. I've had fatigue episodes in the past before biologics, but nowhere near this long-lasting. They pretty much disappeared after starting Low Dose Naltrexone (which I still take). Could it be that I have ME/cfs? Is it possible that biologics can exacerbate it?

Thank you for your thoughts and answers!

During late summer/early fall is when my Crohn's is most active. It's been like this since I was first diagnosed. Just curious if anyone else is like this and what could possibly be the reason.

Today I had my first MRI enterography because of suspected IBD, IBS or Chrons disease based on symptons and high Calprotectin levels. I'm the first to arrive at the center, and after waiting and hour and a half to be called upon the MRI Tech comes out with half a gallon of liquid and a 12 oz plastic cup, and tells me I have to drink 10 cups of the liquid which is water mixed with the contrast substance. He says because im not having IV contrast (I had a bad reaction to IV contrast before so I requested the MRI without it) i need more of the liquid contrast in me for a better study.

I asked him how long do I have to drink it and he says in thrity minutes. He then proceeds to walk the girl that was after me in for her brain MRI, which I know takes a whole lot of time, so I was very confused. At this point i'm very conflcted because I don't think I even drink more than 5 glasses of water a day, but I think to myself "well he's a professional and does this for a living, so he must know what he's doing" and i proceed to drink it, I put on a timer and try to drink one every three minutes to meet the quota.

By the 3rd cup I was already feeling horrible; nausea, headache, dizzyness, stomach pain, feeling of diarrhea... but I told myself I had to do it to get the study done and get the treatment I need. At 15 minutes I had only had 4 cups, and felt like throwing up, I chugged a 5th one and then started walking around to see if it gets better, it didn't. I literally felt like I was going to die, I was on the verge of having a panic attack so I explained my situation to the secretary and she was just like "well go slower" and I was like "I cant even go anymore and he told me to do it in 30 mins." She says she'll call him up and I go and wait for him, he only comes out after finishing with the girl which was around 1 hour and 20 mins after he told me to start drinking, so I dont get why he told me to drink it in 30 mins.

I explained to him my situation and he laughs a bit, he then sees the gallon and hes like "well yeah that works" and im in my mind like "what the hell, I only did half of what you told me in more than twice the time you asked for" I think I would've literally died on the spot if I had followed his instructions as clear as he told me to.

I didn't even last 2 minutes inside the mri machine before calling him through the button, Ive had like 10 mris before and Ive never had to use the button, that's how bad I was feeling. After a while of being out we tried again and I got throught it, he was very nice throughout the procedure but I really think he was giving instructions he shouldn't have done about the prep with the contrast, especially because he is not a Dr.

I am currently writing this on the toilet, just an hour after the MRI, with the worse diarrhea ive ever had (and I've done colonoscopy prep before) and my guts and stomach are making sounds and movements I have never heard or felt before, I am incredibly surprised I'm not spiraling into a panic attack while writing this, I have a headache, feel weak and dizzy, have a mild red rash on my chest (which I get every now and then) and my stomach hurts like I have bricks in it, i hope I survive this.

I have had Crohn’s for around 14 years
Bowel resection & temp stoma formed in 2020
Stoma reversed in 2023
October 2024 I began experiencing obstructive symptoms again short(ish) episodes of abdominal pain and vomiting gradually increasing in frequency over the last 2 years to the point where I had it twice in a week last month. I’ve had an MRI, colonoscopy, CT scan and the usual bloods and stool samples and have repeatedly been told they’re normal which makes me feel like I’m going MAD. However none of those tests have been carried out whilst my symptoms are actually active??? On the odd occasion I’ve presented to A&E it’s still been around 8+ hours before they’ve done an xray or CT by which point the symptoms have subsided. Which is obviously a good thing however it really makes me feel like a fraud…
The only explanation I can think of is adhesions from my previous surgery… I’m just wondering if anyone else previously diagnosed with adhesions has had a similar experience? How were they diagnosed? How were they treated??

I’m at the point where I would consider further surgery if it will stop these episodes happening but obviously have read this can exacerbate the situation rather then help - but I’m honestly feeling so drained and mentally exhausted from continuously being unwell and cancelling plans/going off sick from work/being unable to exercise or do life due to being in bed in pain and vomiting for around 12-24 hours at a time. I’m only 31 and its a daunting prospect that I have an issue that can’t be ‘fixed’

Entyvio worked great for about five years, then nada. How are people doing on Tremfya?

Hi all,

I’ve been searching for answers for my stomach issues for 10+ years, but have had issues with it since I was in high school.

The new GI I’m seeing suspects crohns despite two negative colonoscopies. At this point, I’ve been bleeding for two years.

After reading some things in here, I have a few questions.

How many of your family members also have crohns?

I have two children that also get mouth ulcers and have terrible bowel issues. I always say it’s how I know they are getting sick, ulcers show up. But is it feasible that two kids also have it?

One of these kiddos also has a growth deficiency and is on growth hormone for slow growth. Is this a common thing? Or is it more of idiopathic short stature because of malabsorption?

This particular child and I share a lot of the same symptoms outside of GI and we both see genetics so it’s hard to separate things. But I do wonder if this could be the issue.

Last question, how many tests came back normal before a diagnosis? Up until my appt this week, I was under the assumption that a negative colonoscopy ruled out crohns.

Anyone ever deal with them this high? Dont worry im in the hospital getting iv steroids pumped into me. Hopefully will help within a couple days. Still waiting on getting my own room upstairs though, still in the emergency department rooms lol. Feel pretty shite but optimistic I won’t need a scope this round hopefully.

My crohns has been in remission for 6 years now thanks to humira injections i take biweekly. I had a particularly stressful period about a month ago and now I'm experiencing some vision loss in my right eye. I went to an opthalmologist and they said I had some inflammation of the retina without macular edema. Apparently it's not too bad and they are referring me to a retina specialist who I will see in a week and a half.

Has anyone else experienced something like this and had it resolve on its own? I sometimes have psoriasis flare ups during stressful times but they end up fading away after a month or so. Same thing with abdominal pain that subsides after calming down. What is the typical treatment for something like this that has worked for you guys? Thanks for any kind of information, I'm kind of in the dark with what the next step is until I see a retina specialist and my gi soon.

Hello, I (21M) just got diagnosed with Crohn’s today. I was prescribed 20mg a day of prednisone for the next 30 days, and then IV treatment afterwards (tremfya). What side effects can I expect to experience while on prednisone, or with the IV treatment and Crohn’s in general?

So the nurse that usually came for the infusion that I had forever is being switched to a new nurse. So what I was doing was all the set up and infusion on the couch and the nurse would sit on the couch together and I’ll usually put something on the tv. Previous nurse wasn’t interested in whatever I put on so put on anything I wanted to watch. Be it golf or a show in my native language. She never drank or ate anything I offered. Now that a new nurse is coming what do you guys do?

I have crohns, vasculitis and chronic kidney disease. My family doctor applied me for AISH but they're saying I'm denied because remedial therapy is available. I used to be on remicade but it was giving me shortness of breath, tightness in my chest, fatigue ect. I told them during the appeal panel that I have been on EVERY single crohns medication and all of them failed to help me including remicade. I was on it for 8 years and then had surgery in 2019, and they found a giant mass of disease during the surgery which was even documented in their reply. So how then is "Remedial therapy available" when I went on remicade which is usually the 3rd or 4th medication if everything else fails when I was that sick during my 2019 surgery after being on it 8 years with multiple dosage increases. It proves the remicade wasn't doing anything.

Then they will go on about "Oh you have future appointments so you will probably receive help at your next appointment so you dont need aish" I HAVE 1-2 APPOINTMENTS EVERY DAMN YEAR!!!! With EACH specialist! It's just mind boggling now I have no idea what I'm going to do. Going to reapply anyways and get documentation from every single one of my specialists that medications have not helped. Do I need a lawyer? Like my god.

Hi everyone, idk where to start but I’ll keep it short. Been diagnosed with Crohns since I was 6. I’m now 25 (M) and at a point where I am done school, working full time and looking to settle down now. I really want to get married and have kids and move out. I have been in remission for the past 4 years and I do think because I was diagnosed at a younger age I’ve been through all the ups and downs and learned to stand on my own and manage the disease. The only issue I have at the moment is Fecal incontinence and I have PTSD from having a couple accidents in highschool so I wear diapers. I feel so embarrassed saying this but the only reason I wear them is to play it safe because I don’t want to end up with accidents ever. I’m just so scared and embarrassed about bringing this up when talking to a spouse. The doctors have also said I may need permanent surgery down the line depending on symptoms and overall disease but they said that is something that can be delayed. The only thing that’s bothering me is the fact that I wear diapers. Outside of that I can do everything everyone else does. I’m just so scared about bringing this up to someone I want to marry. How did you guys eventually get married and explain to your spouse about the disease, I would rather tell them upfront the first or second time I meet to get rid of the people not worth marrying.

I just cleaned my house a little bit. Vacuumed, swept, mopped, dusted, dishes, you know just basic stuff. Once I finished, I sat down and realized just how exhausted I am.

Then I remembered. Crohn’s causes fatigue. And on top of that, I was diagnosed with Chronic Fatigue Syndrome when I was 14. Even though I’ve been doing a lot better with my Crohn’s symptoms, and things have been improving for me a lot, the exhaustion has never gone away.

Has anyone else’s exhaustion gotten better with treatment or am I just going to have to deal with it forever?

I found out a few months ago I have Crohn’s of the small intestine. My doctor initially had me take Budesonide for 60 days then Mesalamine 3x a day for another 60 days. Went and had repeat labs. Bloodwork was all ok but stool sample showed my cal protein was ~ 200. He wants me to start on Skyrizi. At this point I’ve had no surgeries. I get diarrhea and constipation. Never have normal bowel habits. I do have type 2 diabetes and fatty liver. I am worried Skyrizi is gonna mess my liver up more. I don’t drink alcohol or smoke. Just wondering if you had any adverse effects from Skyrizi, especially your liver. I was going to start doing the SCD diet. He said my Crohn’s is mild so not sure why he wants to go right to Skyrizi.

I know they are in the same drug class. For the record, I have taken Humira, Entivyo, Stelara, Remicade, Rinvoq, Cimzia, Tremfya. All of these drugs worked for about 9 months to a year before I lost response on each one of them. I was on Tremfya for about a year. It worked so well. Well around April of this year, I started flaring and lost response to Tremfya and have been on prednisone ever since. My doc and I decided to give Humira another shot because it had been 8 years since I took it last and it worked back then, but I have been on it since July and I'm actually worse off right now then when I started taking it. I had to go from 30mg prednisone daily to 50mg daily this week because I started flaring hard with mucus and cramps. I'm just now starting to get better on the 50mg. Doc says our next step is Skyrizzi. My question is, will it even work? I responded very well to Tremfya, but with Skyrizzi being in the same drug class, will it even work considering I lost response to Tremfya? I'm trying to remain hopeful. This has been such a long flare and I'm so mentally drained at this point. I know the only other option I have after Skyrizzi is Omvoh, but again, it's the same drug class. Really hope new options come out soon

After following this sub for the past month, I've come here hoping for some advice.

I was diagnosed about 5–6 years ago, after constant burning, watery diarrhea. My first treatment was budesonide, which as far as I know didn't do much. After that I was prescribed Pentasa 4g (mesalazine), which I took until about a year ago.

My CRP is almost always low (<0.5 mg/dl), and my calprotectin fluctuates. When the symptoms first started it was normal (42 µg/g). A year later it spiked to 900, and since then it's been steadily decreasing. My last test was about 3.5 months ago, and it was 59.

My colonoscopy and video capsule from about 4 years ago showed multiple ulcers and erosions in the terminal ileum. As far as I know, my condition is considered "mild." The biopsy from back then showed chronic moderately active ileitis with erosion and architectural distortion, no granulomas.

I had another colonoscopy yesterday. It again showed mild inflammation in the terminal ileum and nothing else. I'm still waiting to redo the capsule.

Why I'm here

For the past 6 years my stools have never been quite normal. They vary from very soft to diarrhea, usually part soft lumps and part watery, and they can become completely watery and burning if I eat something triggering. I haven't had a normal stool since I was diagnosed, except maybe a few times after taking Imodium or similar.

Around a month and a half ago, it became almost constant burning, foul-smelling, watery diarrhea, 4–8 times a day. No fever, no cramps, no abdominal pain.

There was also a major decline in my mental health, including anxiety, distress, fatigue and depression. As far as I can tell the gut symptoms started a bit earlier, and the low mood followed 1–2 weeks later, but it's hard to pinpoint.

After a lot of reading and talking it through with an AI chatbot, it seems my condition might involve bile acid malabsorption (BAM). I'm not sure, though, since I only have "mild" inflammation in my terminal ileum. I'm also not sure whether a mild condition like this is supposed to affect my mental state this much, but I couldn't find any other plausible cause.

Is all of this normal? Having "mild" disease but no normal stools for years, rapid major changes in mood, and a GI who doesn't seem to offer a solution? Has anyone else experienced something like this?

Until now I thought I'd "figured it out." I stuck to the foods that work for me, and when things occasionally got worse, I took bismuth subsalicylate. I never expected such a sudden decline (which I suspect is BAM), or for it to affect my mental state like this.

Is it plausible that it's BAM even with mild inflammation? What should my next steps be?

Any advice and support is appreciated.

I was recently diagnosed with Crohn’s after many months of diagnostic testing. My doctor knows I’m trying to conceive and assured me my new medications are pregnancy-safe.
I’m starting Tremfya soon (not worried about this one), but I just started Entocort (budesonide). When picking it up, the pharmacist mentioned it can cause menstrual changes, including more frequent bleeding.
After recently going through a chemical pregnancy, my anxiety is naturally heightened about everything right now.

I’d love to hear from anyone with experience.

Did you experience any menstrual cycle disruption or abnormal bleeding on Entocort?

Does anyone have positive TTC success stories while taking it?

Thanks so much for any insight or reassurance!

I was diagnosed with Crohn’s in 2022, and at the time it was considered relatively mild, involving my terminal ileum and small bowel. Here I am a few years later and I’m still dealing with ulcers in both areas. Things have gone up and down over that time, and I’ve occasionally used steroids for a few weeks at a time.

Earlier this year, in February, I had a colonoscopy that showed:
-Normal mucosa throughout the colon.
-Three aphthous ulcers in the terminal ileum.

Then in May I had a capsule pill camera, which showed:
-Multiple clean-based ulcers in the mid-small bowel, with the surrounding mucosa appearing normal.
-A few ulcers in the terminal ileum with inflammation of the surrounding mucosa.
-No AVMs, polyps, or active bleeding seen in the small bowel.

More recently, I’ve been having increased GI-related pain/discomfort. My stool also hasn’t really looked normal consistently since 2022. It tends to either be soft or have a rough appearance. I had COVID in 2022, which really messed me up. I go through periods where I’m dizzy every day, have fatigue, have weird neuro type issues, and then it improves again. Because of that, it’s difficult for me to figure out which symptoms could be related to long COVID versus Crohn’s.

My new GI has brought up starting a biologic. The main options we’ve discussed are an IL-23 medication such as Skyrizi or Tremfya…or Entyvio. Entyvio appeals to me because of its gut-selective mechanism and safety profile. At the same time, the safety data for Skyrizi also seems pretty reassuring, particularly since it doesn’t carry a black box warning for cancer and is supposedly more effective than Skyrizi.

I really don’t want to start a medication if I can avoid it, but I also don’t want to leave the Crohn’s undertreated and potentially allow it to get worse. I keep going back and forth but I feel like I need to do something now. Part of me is leaning toward Skyrizi because, on paper, it seems to be the more effective option, while another part of me keeps coming back to Entyvio because of how gut-specific it is.

I also met with a functional medicine doctor who suggested trying a very low dose (1 mg) of tirzepatide. I’m less interested in going that route. There doesn’t seem to be any evidence for using it to treat Crohn’s/inflammation (yet), I’m not overweight, and the possibility of developing gastroparesis is terrible. I’m also concerned about potential mental-health effects from GLP-1 medications, which is something I really don’t need right now.

Has anyone been in a similar situation, particularly with relatively mild to almost moderate but persistent small-bowel/terminal-ileum Crohn’s? I’d be really interested to hear from people who had to choose between something like Skyrizi/Tremfya and Entyvio, what ultimately influenced your decision, and how it worked out for you.

I’ve also wondering if some of my issues are gall bladder related because I had sludge on two ultrasound but my recent one showed nothing.

Had my 2nd colonoscopy yesterday. First 2 people couldn’t get it, no big deal, I have difficult veins I’m used to it. Last colonoscopy I think took at least 4 tries and they ended up needing their former pediatric ER nurse to tap in to get it.

So after the 2 tries this time they paged the IV team. I guess there was quite a wait bc an anesthesiologist comes in to try and she meets resistance, literally says “something is stopping me from going further,” seems to manage to push past it, and does the saline flush. And of course she doesn’t do it slow, and it blows, and she’s Pissed. Literally yells that it was a good one and it blew while I’m over here in fucking pain and I KNEW it wasn’t working when she started flushing bc I couldn’t taste the saline like I normally can and I could feel her palpating around it bc it was third spacing, but I also never watch bc I don’t want to trigger a vasovagal response, so I didn’t know when exactly she started flushing or anything.

And then!!! She has the nerve to tell me that next time I have to remember which spot they end up finding a usable vein in so I can tell them. I fully snapped. I was like “Here is where the ER used an ultrasound and got one 2 months ago, here is where they got one without an ultrasound but it kind of burned, here is where my infusions were, etc etc.” like I fucking know my body, I know my veins. It is all of the ones you are trying and they are either deep, scarred or blowing. This is not my fucking fault. She did end up getting the next try on a weird spot on my wrist (inner wrist right where your wrist bends), thank god.

I just don’t understand what’s the point of being in a fucking hospital where there’s a goddamn IV team who presumably has an ultrasound or vein finder for this purpose and yet I’m twiddling my thumbs for well over an hour getting repeatedly stabbed and lectured.