r/IBD

Growing up I always had a somewhat sensitive stomach, but things really escalated in high school. Around 16/17 I started having symptoms that looked a lot like ulcerative colitis (which my dad has). I had a colonoscopy that showed ulcers in my colon, but my presentation wasn’t super typical. I had pain, bloating, heaviness, fatigue, etc., but almost no diarrhea or bleeding. They basically called it “unspecified colitis” and treated me as UC anyway.

I stayed on meds for a couple years, then had another colonoscopy around age 19 that was completely normal, so I went off medication. After that I mostly managed things through diet/lifestyle, but still dealt with a lot of bloating, abdominal pain/cramping, SIBO, food sensitivities (especially gluten/high FODMAP foods), fatigue, and random systemic/autoimmune-feeling symptoms for years. I always just assumed it was IBS because I could technically still function.

Then about a year ago things got significantly worse. I started getting constipation, severe upper abdominal gnawing/cramping pain, awful bloating and gas, iron deficiency, burning rashes after eating, joint pain, extreme fatigue/brain fog, worsening food intolerances, urgency/pain with bowel movements....

Still… basically no diarrhea, which is part of why I’ve felt so confused.

I had another colonoscopy earlier this year that showed ileitis in the terminal ileum, and a capsule endoscopy later found ulcers in my small intestine. One of my Crohn’s blood markers was also mildly elevated. Oddly though, the biopsies themselves weren’t very “classic Crohn’s,” which has added to my uncertainty.

My GI is essentially treating this as Crohn’s at this point and we’re trying to get a biologic approved (insurance denied Entyvio first, now trying Remicade). I think part of my fear is that because I don’t present like the stereotypical Crohn’s patient, I worry biologics won’t work for me or that maybe I’m missing something.

I guess I’m just wondering:
- does anyone else here have Crohn’s without much diarrhea?
- did anyone else present more with systemic symptoms (fatigue, joint pain, rashes, brain fog, etc.) than bowel symptoms?
- has anyone had relatively nonspecific biopsies but still ended up with a Crohn’s diagnosis?

I also wonder sometimes whether years of strict diet/lifestyle management may have partially kept things “contained,” because I genuinely think my symptoms would be worse if I wasn’t already so careful with food, stress, sleep, activity, etc.

If your story sounds like mine please tell me what has worked for you!

just got done w a colonoscopy!! had a polyp removed and my doctor said i had inflammation in rectum and the junction of my small bowel and colon, she said it’s very suggestive of possible chrons disease but i won’t know until biopsy’s… this is really bumming me out im praying i just have some sort of inflammation from something else and not IBD… im not ready to give up smoking and things like that :( anybody have similar experience?

Hi,

For three days (i think) now I (F24) have been experiencing a weird evolution in my bowel movements. First of all, it should be noted that i have a history of constipation and that most of the times there is some straining when going to the toilet.

For what brings me here today, it all started with diarrhea which i think contained a bit of blood but i wasn’t sure as water wasn’t pink or anything. The following morning the diarrhea was still there but this time i could see a sort of red mucus at the beginning, i went 3 other times i think and then i only had this red/bloody mucus that was heavy (it sunk to the bottom) but still didn’t turn the water pink or anything.

Now on day 3 (i think) and i went two times as of now, only red/bloody mucus came out and same as before. I’m eating but nothing has come out in 24 hours. I’m not experiencing pain nor do i have a fever.

Has anyone experienced this ? I took an appointment with a gastroenterologist but it’s not before a few weeks away and i’m very anxious and don’t know what to expect (what i found on the internet is either reassuring or terrifying so) except i know ill have bloodwork done and probably a colonoscopy (that i’ll probably be back here to discuss)

Thank you all in advance !

Hi All,
I have had blood in my stool since February and after going to the doctors, they did a cprotien test where the result was 130 so they waited 6 weeks to do another.
I’ve just had the results back and it’s 5600 right now, I’ve been referred to gastreonology but unsure of how long they will take to contact me.
I’ve had other symptoms but in general I feel okay like I can go out if needed and get on with my day, is this normal for having such a high number or should I expect something to come?
Thank you

I have a hard time consistently eating vegetables bc it often causes gas, pain, and diarrhea. Idk if I should just suck it up and hope eventually those symptoms go away, or if it’s a result of my UC. Bentyl helps a little. I want to be healthier but it’s hard when it feels like I suffer for it

Oh also this across cooked and raw veggies, seeds or no seeds

Hey everyone,

I am struggling with an issue - I was 28 years old when it started, now I am 32 (33 almost). I had bloody diarrhea (litteraly full bowl of blood, I'd say maroon / bright red) back in 2022. I did not poop for a week and then pooped pretty big blood clot. After that I did not have any bleeding for a while. But this symptoms come back once in a while (I'd say in 2 years, especially when I stop eating healthy and start to eat too much and getting a bit heavier).

Recently, I pooped bloody mucus, and it happened 3 times in the last 3 weeks. First was significant bloody mucus (similar to what I found on this r/) the two next were just small bits of blood. I also had episode of melena 2.5 years back.

I have absolutely no idea what it it is, doctors are pretty clueless too. I had both colonoscopy and upper endoscopy (upper endoscopy 10 days after melena happened) and colonoscopy did not found anything, upper endoscopy found gastritis with a lot of bile.

Is it possible that I have IBD / Crohns? even tho they found nothing (they took biopsies and all)

Hi everyone,
I’m a 20 year old female and have had UC for three years now. I failed oral medication and some biologics. I am starting Skyrizi tomorrow via infusion and after three switching to the shots. I am praying this is going to help me. My main problem is urgency, when I have to go to the bathroom, I can’t hold it for more than a second. I am currently on summer break from college and I haven’t been able to start my summer job yet because of my UC. My job starts at 5:30 am and the mornings are the worst for me usually and it’s on a golf course so a bathroom isn’t right there. I haven’t tried to find other jobs during the evening but no where around me is hiring just for the summer. I am so annoyed because I am 400 dollars in debt and have no way of getting out right now other than doordashing, which I have been doing when my stomach feels okay.
Is anyone on Skyrizi and has it helped plus how long did it take for you to get better?? Also does anyone have any tips for urgency?

Could hidden infections, mold exposure, stress and immune dysregulation be driving chronic gut symptoms? Lindsey sits down with Josh Dech to unpack the deeper connections between inflammation, bile flow, the microbiome, mold exposure and immune-mediated gut conditions (Crohn's and colitis). This conversation explores functional approaches to healing and why understanding the “why” behind symptoms matters on The Perfect Stool Podcast with host Lindsey Parsons, EdD: https://linktr.ee/theperfectstoolpodcast

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hi! currently waiting for test results to confirm ibd. i have to sit for an 8 hr exam (MCAT) tomorrow w 2 15 min breaks and a 30 min break. i was wondering if anyone has tips for when you're in a situation like this. a little anxious abt having to use the bathroom at a random time that's not a break time. i was planning on eating a protein heavy breakfast, no caffeine (unfortunately), and a yogurt and sandwich for the lunch period. obviously couldn't get accommodations because i don't have an official diagnosis.

Hello fellow Crohnies! I’m having a third bowel reaction surgery next week. I’ve done this twice before but it’s been about 7 years.

I’ve been asked to make a list of anything I might want or need at home to be comfortable for a few weeks following my surgery. I can’t remember what I needed last time to be comfortable. I will have someone at home helping me.

What items helped you at home post resection?

What I have so far:
- low residue foods
- thermometer
- Neosporin
- alcohol swabs for nausea
- heating pad
- long cord for my phone charger
- edibles

Thanks in advance!

Gastro department don’t seem concerned about Calprotectin being greater than 2700. They said it’s probably not IBD due to the fact I have chronic constipation.

I had chronic nausea for over 2 years with the only explanation is it’s a psychological condition. Apparently even if I did have IBD that is definitely not the cause of my nausea.

They are doing a sigmoidoscopy just to have a look but don’t expect to find anything. I’ve been bleeding for months and have lost a significant amount of weight due to low food intake. I have pain in my tummy where my bowel is and I’ve been bed bound for half a year now with fatigue.

They are the specialists so it’s not my place to question it but am I crazy in thinking it’s a bit odd? I obviously don’t want to have IBD but thought maybe I had an answer.

Hi! Looking for some advice or someone to go through how IBD affected them before they started treatment?

I'm diagnosed IBS and I know how it differs from IBD biologically, but struggling to find info on personal experience of symptom differences? Particularly when symptom lists talk about people with IBS feeling better after a bowel movement - how does someone with IBD feel?

My experience & advice question:

I've had blood tests and stool sample tests, both of which are normal for inflammation etc. but I had low B12 (now on injections and fine) and consistently low iron stores (been on prescribed supplements for years which have very slowly brought my stores up but every time I stop, it drops) which makes me think of malabsorption?

I'm still pretty fatigued despite b12 injections + ferritin supplements + thyroid medication, frequent nausea & stools are very rarely normal. Fresh blood is rare but I think this is due to hemorrhoids or perhaps a fissure at times when there's been more blood. Urgency is very frequent and intense.

Pain isnt bad but I've had this for so long now (over a decade) I'm not sure if I know what normal is. No weight loss, some appetite issues but I have anxiety which can explain a lot of symptoms.

With my blood tests and stool samples being normal, should I even push for further testing? Is there anything else to look at before jumping to colonoscopy? Which I dont want to go through if its unlikely to find anything

Thanks for reading. I'm just struggling and need some input before I go back to the GP again

I'm off meds now. I try to eat healthy and do some martial arts and bouldering. But I'd like to push my heart health further because I have no stamina.

I normally get strong pain in the stomach while running due to old scars. Do you go for running/jogging?

How did you start, and when did you do more? I don't want to push my body too much.