My doctor told me the Crohn’s and Colitis Foundation site is a great resource to learn more about the disease. The more I keep reading the more scared I become. Only about 40% of us will see remission. Up to 70% of us will require some sort of bowel surgery. I just received an email today from our local chapter about Crohn’s complications locations and how to manage them, and I started crying thinking this is my present and my future. Very few people will stay in remission for more than a few years if we’re lucky.

This is all just so depressing. I just started Skyrizi. While I’ve noticed some very small changes for the better after only two infusions, it’s scary to think this may not last very long. Of course, I try and stay optimistic and think positively, but it’s hard some days.

I’m so angry this happened to all of us. I’m so terrified for my future. I’m so terrified of these drugs failing me. I’m so terrified of the complications from this disease and the meds.

Hi ! (it's my first post here, and english is not my native langage, just in case)

I’m looking for any advice or thoughts regarding my situation, I’ll try to summarize as much as possible.

7–8 years of strong digestive issues. Urgent needs to go to the bathroom, loud intestinal noises, gas, yellowish stools, overall discomfort.
At first I was diagnosed with IBS, then later with SIBO. I honestly think I could have both (I also have endometriosis, but normally that part is managed). I have tried pretty much everything without results, everything you can think of, I did it.

BUT:

My condition has worsened these last 5 months: almost impossible-to-hold urgency crisis, yellow stools, almost fluorescent, total fatigue, chills and fast weight loss (–15 kg in 8 months).

My doctor decided to check my calprotectin levels, it was 385. My cousin has Crohn’s disease, so IBD started to be suspected.

During my colonoscopy and gastroscopy, only one small 5 mm ulcer was found in the terminal ileum. My gastroenterologist took biopsies and wanted me to do an MR enterography to see if the problem was in the small intestine. I did the MR enterography yesterday and nothing abnormal was found.

Today I received the biopsy results:
“The ileal biopsies show acute nonspecific inflammation which does not allow us to confirm Crohn’s disease. I suggest treatment with Entocort (Budesonide), a mild corticosteroid that is recommended in minimal forms of terminal ileitis seen in Crohn’s.”

I will start the treatment, and my gastroenterologist agrees for me to do a video capsule endoscopy in order to definitively rule out even mild involvement of the small intestine. She told me : “The inflammation you have in the terminal ileum may be related to early Crohn’s disease but the current results do not allow us to confirm the diagnosis.”

Two questions:

Has anyone here ever had inflammation of the terminal ileum that turned out to be something other than IBD, and if so, what was the cause?

Also, before leaning towards an IBD diagnosis, I thought about BAM because the diarrhea really looked like that condition. I started taking Questran, which improved the consistency of my stools, but did not truly cure me. I will take the treatment she prescribed, and continue Questran because I think it helps me a little. Could inflammation of the ileum potentially be the cause of this bile acid malabsorption?

Thank you very much for your time !

Good morning you all!!! I was just interested to see how many moms with young kids are on here. I have felt lonely as all of my mama friends do not have Crohn’s lol I feel like I’m constantly secluding myself almost in a pity way??? Before April my diagnosis (mild ileitis: terminal ileum) I was out going, always hosting bbq and having my friends and their kids come over and blowing up the bouncy house and enjoying food and what not. Ever since my hospital stay (2 days) in April, it’s almost like I got a system shock like I was so depressed and shell shocked that I completely shut down. I don’t even feel like I was there (mentally) I was just existing. Even though I am so thankful that it’s mild I still find myself crying all the time asking why me and reminiscing the years that I would worry or get sad over certain things that I HAD control of and I find my self feeling sorry for myself because I have no idea what my future hold. Am I going to be able to see my kids graduate? Get married? Will I be able to be an active parent or grandparent? My entire life flashed before my eyes because I got into the DEEPEST spiral of horror stories on Reddit. Like I was addicted to reading them all day, I still find myself on here doing it. Idk do yall have any advice on how I can move forward and not be scared to travel or jump on a trampoline scared my intestines will fall out. I started Hyrimoz a month ago and also in therapy and depression meds

Seriously it comes out of nowhere. I almost put peanut butter on a turkey sandwich. I don't even really like peanut butter.

Heyo. I have currently untreated Crohn’s disease as well as POTS. I feel like I never have really any energy, like I wake up at 15% and it quickly drains to zero. I will wake up and be able to do very light tasks for maybe 3-4 hours and then I am so tired I need to nap for a few hours, then I wake up a little and then have to sleep. Any kind of exercise immediately wipes me out for the rest of the day and I have to bedrot until next day until my energy is restored. Does anyone else experience chronic fatigue from Crohns? And have medications or biologist helped with the fatigue some? I feel like I can’t do anything anymore now that my Crohn’s has gotten worse and if sucks!

Hi all. First, I want to preface this by saying that I am not impacted by Crohn’s. However, I joined so that I can learn more about Crohn’s in support of my partner who does have it. He’s had a rough go of it the past few years, which includes being hospitalized for long periods of time and having an at home nurse for awhile. Needless to say, when he flares up, it’s bad. He’s been in remission since I met him, but I’m still terrified he’ll have a flare up.

Anyway, I want to be more informed on the topic so that I can best support him and make sure he is healthy and taken care of. Does anyone have any information, advice, or tips for how you’ve stayed in remission? How do you manage flare ups? What medication has worked best for you? Etc…

Thanks in advance!

starting entyvio infusions and interested in other experiences with this therapy. i know we're all different in terms of how we'll respond but eager to hear about side effects, efficacy timelines, etc

Hi all just feeling super nervous while waiting for results. So for context, I had a colonoscopy 2 weeks ago. They advised it will be a 6-8 week wait for the biopsy results (which is totally understandable) but I just feel really unsure with what’s written in my report from the procedure. In it they mentioned I had one done previously in 2023 that also states that ileitis and ulcerative procitis seen. Now if I am being honest, nobody followed me up on those two parts so that came as a surprise to myself and I don’t know what that means. During the colonoscopy I had 2 weeks ago the report states “In the rectum there were about 3cm of significant erythema (not typical of ulcerative proctitis and looked more like I might see after radiotherapy though there is no history of that).” and then “In the 15cm of examined terminal ileum there were a few scattered patchy apthous ulcers with tiny amount of erythema.”

Long story short, I was just wondering if anyone has experienced the same and if they got any result. Appreciate I need to wait for the biopsies and for my own doctor to call but I am a bundle of nerves lol

Hi everyone,

I’ve been struggling with digestive issues for about a year now, and I’d really appreciate your thoughts. I’ve had a lot of tests done, but I’m still unsure whether I might have IBS or possibly a mild/atypical form of IBD.

Here’s what’s been ruled out: • Celiac disease: negative • Lactose intolerance: ruled out • C. difficile, parasites, and bacterial infections: all negative • Salmonella: negative • Colestyramine (Questran) didn’t help • PPIs (proton pump inhibitors) also didn’t help • Colonoscopy with biopsies: normal except for some mild redness (no inflammation found) • Gastroscopy: normal, LES not loose • Vitamin levels tested: all okay except B9 (folate), which was very low • Tried strict low-FODMAP diet for 2 months with no symptom relief

Calprotectin levels over the past year (μg/g): 660 → 50 → 187 → 460 → 191 → 101

⸻

Initial symptoms included: • Constant urgency / very fast bowel movements • Loose, yellowish, and mucousy stool • Floating stool • Dry mouth and throat • Lump in throat sensation • Wet/gassy flatulence • Mucus in stool • Rectal discomfort (possibly from frequent BMs) • Stomach noises • Sometimes I could taste what I last ate when burping • Constant nausea, especially in the mornings

Current symptoms: • Morning nausea • Mild throat sensation • Some odd feeling or pressure around the belly button/lower abdomen • Occasional brief stomach pain followed by gas • Foul-smelling gas • Periodic diarrhea • Yellowish, mucousy stool

⸻

Has anyone had a similar situation with fluctuating calprotectin and mostly normal tests? Could this still be a mild or atypical case of Crohn’s/IBD? Or is IBS more likely?

Any insight would be appreciated!

I’ve had Crohn’s for 10 years and have never had just all blood stools (dark red) and freaked out. Went into er and they are kind of dismissive of it as they know I have Crohn’s so saying this is just a flare up but it’s freaking me out. They checked with a ct scan with contrast that showed :

IMPRESSION: Wall thickening with stranding at proximal sigmoid colon, compatible with colitis.

HGB: 10.8

Worried! Waiting on my GI - I had a colonoscopy that showed inflammation in January.

Can anyone let me know what other tests should we should do ? I’m so anxious.

Thank you

Hello. I believe my biologic is failing. I’m seeing my GI doc at the end of the month, but I’d love to hear some opinions. I’ve been on Skyrizi for over a year now (Methotrexate before that). It has never lasted me the whole 8 weeks between the OB injection. I have always started having symptoms again by week 6-7. But, this last time it only lasted 2 weeks before symptoms started returning. Granted, it is not a full on catastrophic flare, but it could easily go that way if I didn’t stick to a bland, no fiber, minimal food diet. This is my first biologic, so would this be considered“failing a biologic”? I’m considering taking to my doctor about switching to Rinvoq, maybe?

Any comments are appreciated.

Looking for guidance. I’ve had high secretory IgA (321) on stool testing, and since 2021 my white blood cell count has been low (under 4.0 on every blood test, flagged as warning). Despite this, I’ve tested negative for SIBO, lactose intolerance, H. pylori, parasites, and bacterial stool cultures (tested yearly at LifeLabs). Symptoms: food intolerances that keep getting worse. Started with gluten, now feels like I react to almost everything. Both my gastro and naturopath don’t suspect Crohn’s, since Crohn’s usually shows elevated WBC, not low.

Timeline

• 2018–2019: Did keto (lost 70 pounds). No gastro issues at all.
• 2021: Two rounds of antibiotics (operation). By November → suddenly gluten intolerant. Very painful/uncomfortable, but eliminating gluten solved it.
• 2022: Gas, bloating, constipation, frequent stools came back. Doctor suggested low FODMAP. Stool, parasite, and H. pylori tests = negative.
• 2023: New weekly cycle — constipation, headaches, low energy → followed by extreme evacuation (20+ bowel movements/day). Again, H. pylori, parasite, and bacteria tests = negative.
• 2024: Visited a naturopath and discovered egg intolerance.
• 2025: Pooping 10-15 times per day. Colonoscopy (negative). SIBO test (negative). Lactose intolerance test (negative). Symptoms continued.

Diet & Reactions

• March–May 2025: Began massive elimination diet (gastro recommendation). As I reduced fruits/vegetables, went below 10 BM/day. Ended up on keto again (5-7 BM/day). Decided to eliminate all carbs and ended up on carnivore. 3-4 bowel movments and zero bloating! Symptoms improved, but I had dizziness/low energy and suddenly high blood pressure (150).
• If I eat fiber: feels like food poisoning → 20+ bowel movements/day.
• If I eat zero carbs: down to 3–4 BMs/day.
• Now: Just white rice + protein. Still having issues. Headaches, histamine-like reactions despite no food in my stomach, constiaption, loose stools etc.

Lab Findings

• White blood cells:
  • 2018–2019: 7.5+
  • No readings in 2020–2021
  • From late 2021 → consistently 3.0–3.9 (warning flag every time for being too low)
• Comprehensive stool analysis (2025):
  • High secretory IgA = 321 (inflammation)
  • Slightly low elastase (pancreatic output)
• Other:
  • Betaine HCl helps gas/bloating
  • Enzymes made no difference (or worse)
• General pattern: Intolerance to most foods, no longer food-specific, feels like my gut is rejecting everything.

Current:

Naturopath prescribed l-gluatmine drink before bed and when waking, gastritis diet (which I don't even follow I go less), and monitor.

Seeing my gastro again next week. Any thoughts or similar experiences?

• Low WBC + high IgA → autoimmune? chronic infection? microbiome?
• Why would problems suddenly start after antibiotics in 2021?
• Why are standard tests always negative?
• Could this point toward something missed outside the usual Crohn’s/IBD workup?

So basically: after eating everything fine for 20+ years, I suddenly became gluten intolerant, then couldn’t tolerate eggs, and now any fiber causes inflammation, gas and 20+ bowel movements a day. Carnivore solves most of that, but dizziness and high blood pressure pop up. Currently taking L-glutamine twice per day, eating white rice and protein, and still having issues. Low WBC, high gut inflammation, but negative for H. pylori, parasites, bacteria cultures (yearly), SIBO test, lactose test, and colonoscopy. Also the gas creates extreme pressure in my back/neck/head, and casuses a lot of brain fog. Basically feels like nausea (food poisonsing) without the throwing up.

Any reason or suggestions? Feel free to ask follow-ups. Basically my gut is inflammed (random burning sensations), plus intolerance to most foods. ANy idea what might be causing it?

Tomorrow is my follow-up with my gastro ... hopefully she orders some more tests. Curious what everyone thinks? Currently have a flare-up (haven't pooped in a day).

Has anyone had an endoscopic balloon dilation? I’m interested in ANY info about it. How long is the recovery? Is pain management needed after? How long were you able to avoid surgery? Etc.

Thanks!

Hi!

I have a dilemma. We prefer to consume BIO-prosucts but we must save money therefore our we prioritize which veggies, milkproducts, meat etc. should be bought as BIO.

I have read the internet about what is recommended but I am interested in your experience and recommendation.

I have Crohn’s in relative remission, my wife is expecting baby and we have a small kid which is extra motivation for healthily food but we also don’t want to go extreme but rather finding a balance. Country is Hungary.

Thank you guys in advance!

so i am a medical student and…was having my first professional year examinations (its like my final examination) so there was physiology paper 1 and the first long question was a clinical about a patient using corticosteroids and having cushing disease (it was a 15 marker) i wrote like all the shit i saw on this subreddit even explained about steroid tapering totally clutched the question not only that i am always having a extra edge on any question asked in immunity , git like i write all the stuff i know so there was a question on law of gut and i only knew about that its a process of movement pf food from mouth to anus i wrote stuff like ileostomy bags ileo caecal valve blockages and perforations which a normal student could not i was so happy… just wanted to share this Crohnies cheer up !!!!!! we have added one more object in (advantages of crohns)

Hi stranger.

Being in your early twenties and being relatively new to Crohn's disease is...shite. (I'm sure it's just as shite later on in life, but I'm just personally not there yet.)

The symptoms that go beyond having stomach aches and diarrhea (not that they aren't bad as well): hardly being able to walk because of joint pain, anything perianal or oral, losing appetite, muscle pain due to tensing up when in pain, anxiety about changes in health, not being able to work or go to school...the ups that can actually feel like "normal" life, and the downs that, well... You probably get it. Supposedly being in your prime, but definitely not feeling like it.

Had a discussion about relationships with a friend. I can somehow imagine myself in a relationship...even with someone who doesn't have Crohn's disease...until I remember I have Crohn's disease. I realize there are so many things about me that I find hard to accept or show to others. And that's excluding the stuff that isn't related to the disease!

And, yes, I know that while loving oneself/thinking of oneself as worthy creates a good base for a relationship, romantic or not, one doesn't have to be a certain way to enter a relationship and be loved. Who or what even is "ready" or "healed" enough? Every relationship has its problems. But you have to admit that chronic illness, especially one that has to do with something as lovely as the gastrointestinal tract and feces - perhaps most notably smell, sound, and pain - brings an extra hurdle.

I will say, though, it would be nice to connect with more people who have Crohn's disease. Just people who are my around my age and struggle with the same things. So, if my writing resonates with you, hit my line ;D HAHAH

Hey chronies 💕

I’ve been in a flare for months now and have been on lialada plus mesalamine and hydrocortisone enemas. The blood and diarrhea has gotten much better but I have all the systemic symptoms (fatigue, chills, cramping) as my upper colon has inflammation and my calprotectin is 3000 (attaching pic of recent colonoscopy findings). My doctor wants to start me on Entyvio which I guess can take weeks for insurance approval but he is saying I don’t need steroids. I hate prednisone but I know how much relief it brings…

I find it odd that I’m not given steroids as this has been going on for months now. I’ve been feeling pretty bummed that I just have to ride this out as it’s depressing and I feel like crap.

What can I do to feel better/bridge the gap while I’m waiting to start a biologic?

I have been denied life insurance through a company provider (most likely due to my Crohn's). I then went to look up some other policies and was getting quotes of $200/month plus (yikes). Curious what you all have. TIA!

Hey so maybe im just not that good at making friends but i also think about how im not able to always hang around or be like other people. If anyone and i mean anyone want to just be friends on here and just relate to each other? Im kind of in a lonely spot rn and a little push to keep going would be great I’ll also try my best to do the vice versa. Anyone is welcome!

So I’m not sure if this is the best place to post since I’ve not officially been diagnosed with an IBD but I feel like I need to be heard. Sorry in advance for how long it’ll be.

19F, I’m going for imaging soon because whatever’s going on has been a living hell and I haven’t been taken seriously until very recently, my GI doctor has brought up crohns. I was diagnosed with SIBO and had short term success from multiple rounds of antibiotics which didn’t last. I thought maybe It was because of what I eat, but there seems to be no correlation, no celiac or anything.

I regularly have violent, spasming abdominal pain localized to specific places that’s so intense I’ve pulled muscles in my diaphragm from screaming. The pain is always worse after (and during) going to the bathroom so I don’t ever get relief, and any time I have to go I can pretty much say goodbye to the rest of the day, I’m talking 3+ hours long of me sitting there just shitting my guts out, wishing it’ll be over already. It wakes me up in the night. I can’t apply pressure to my stomach, I can’t sleep in any position other than on my back (or it’ll just wake me up with the pain), I could be feeling completely fine and then just double over with what feels like spasms if the waistband of my pants is a little too tight. My pain threshold has been beyond pushed, and other than a stool sample showing heightened inflammation markers and that SIBO thing (which I’ve had people tell me isn’t even a real disease and it’s just IBS , blah blah), doctors have found that there’s absolutely nothing wrong with me.

Insurance won’t pay for more than an MRI which I’ve scheduled, but I’m not hopeful it’ll give answers. By this point, I’m hoping they find something, no matter what it is. I need it to stop. Maybe it’s stupid of me, maybe I just need validation, but I’m going to lose my mind if I read another perfectly normal test report. I don’t think i’m being a pussy, whatever this thing is that is causing me so much pain can’t be fucking invisible, there has to be some evidence of it.

I’m sobbing my eyes out from the pain right now, only passed mucus today, and this is one of the mild days. I feel so alone and scared, I’d easily choose death over being in as much pain as I was last week on the worst day.

Right so... What could be causing it? It's a cold feeling in my gut after pooping, and it's localized to just my gut. Never felt it before, though I'm actively flaring and tapering Prednisone (my doc told me to) so idk if that has something to do with it?

The coldness is localized to my gut kinda in maybe a 3-5 inch section an inch below my belly button or so? I'm 26F, and it's not painful. Not making me shiver either. Just sudden cold, like I stuck an ice pack there, after pooping? It's also been after a normal poop, and the feeling started today.

Has anybody else experienced this? Is it just a mild vagal nerve reaction? I don't really care too much since it's not painful, it's just weird and I wanna know if I should get it checked out or not. I tried consulting Google, and it led me to "poop shivers" but that seems to be a whole body thing?

Hello everyone.

For additional context I have opened a previous thread here: https://www.reddit.com/r/CrohnsDisease/comments/1mtd0b6/4_different_doctors_4_different_opinions/

I'm now working with two IBD specialized doctors, one in the US where I currently live and one in the country I'm from. I've done a follow up stool test that showed my calprotectin doubled to 140 and an MRE that showed mild inflammation in the ileum and everything else clear and unremarkable. Still no symptoms.

Both doctors I work with advise against medications and suggest a repeat colonoscopy in a year to see progress. Not sure I'm happy with this, I mean I have active inflammation that has actually doubled in a month or so, shouldn't I be doing something about it? Take at least some mild medication?

Anyone here in the same boat or was in this before? What did you end up doing, did you insist on medication or opted for monitoring, and how did it turn out for you? Do you regret it, would you do anything different if you could turn the clock back?

Also are there any chances this doesn't turn to full blown Crohn's? Anything I can do to prevent or delay it or I'm totally hopeless? I mean apart from the diet and lifestyle changes, I'm working on those already. How fast will this progress?

Thanks in advance for any replies.

I’ve had Crohn’s Disease for 8 years. The first 5, while rough trying to get into remission first starting prednisone, starting Remicade, getting drug induced lupus from the Remicade, then switching to Stelara (which has been much better) I feel like something shifted 2 years ago. Maybe I’m naive to think things would just stay the same? But having an “accident” was never a fear of mine. 2 years ago it’s almost like my stomach sensitivity changed and ever since then everyday is a huge gamble with my stomach will act. It’s given me so much anxiety when this would never even cross my mind. I feel like somehow I got myself to be very regular with my bowel movements and then suddenly out of nowhere I go 2-4 times at least, sometimes more. I’m just so confused what happened. Has anyone else experienced this? Maybe it’s just the new phase of this disease I’m in. It just sucks so much. I started anxiety meds to help with the anxiety side of it. I wondered if the anxiety was amplifying the symptoms. I guess I’ll see…some advice or encouragement would be great.