I had to taper recently, as I had been on it a while and I started biologics. My calpro is looking better, but I still feel sore and tired. I look back to the prednisone times, and I miss having energy and feeling "normal." I had some side effects, sure, but for me, it was always worth it.

I know this has been the right path, and I need to be patient, and it will be so much better for my body in the long run.

But some days...some days I really miss a solid 40mg dose of prednisone.

So like the title says I did a colonoscopy and my GI said I was showing no inflammation after being on Rinvoq for the last few months. He said the pain I’m feeling is from steroid withdrawal so I’m trying to taper off of prednisone slowly to avoid this but I’m not convinced. My lower stomach and urinary tract is in so much pain every day that I can’t believe this is “remission”. Has anyone experienced something similar

Diagnosed a few years ago, just started my 4 flare up. I have been on 5mg Remicade for around a year and that is no longer working for me. I noticed cramping and blood in my stool 2 weeks ago and immediately started uceris and got a calprotectin test done(elevated). Uceris helped with some of the cramping, but the blood in my stool kept increasing and I started experiencing extremely painful bowel movements. Like shaking in pain and feeling delirious. My doc quickly switched me to 40mg pred and then up to 60mg. Day to day I don’t have as much cramping or pain, but every morning I have awful gas and then I pass globs of bloody mucus. The globs have gotten bigger every day and my bowel movements are extremely painful and even if it’s not an insane amount, always laced with blood. That’s usually followed by cramping and pain for some period of time. I’m not sure what to do. My doc suggested iv steroids but I’m not sure if just having bloody painful stools is enough to go inpatient, since I am somewhat functional day to day. People around me with ibd keep telling me that it doesn’t get that bad that fast, but I can’t help but feel like my whole life has spiraled in 2 weeks. What is a good indicator that I really need IV? From the middle of the day until the evening I feel almost normal, but I’m waking up in the middle of the night due to the painful gas, and then morning time is basically hell.

Since the beginning of my Crohn’s journey (fall of 2024) I have had blood in my stool. It was actually my first symptom and why I went to the doctor in the first place.

While I was on steroids it completely went away, there also wasn’t any blood when I first started Humira…but recently I’ve been having it more and more. I understand that a lot of it might have to do with dieting, but shouldn’t the medicine be helping more? I feel like I’m watching my body fall apart and I have no idea what to do. Does anyone else deal with this?

I have the PLENVU powder and it’s genuinely making me sick.. i’m still on dose 1 and i’ve taken two sips and feel absolutely nauseous.. it’s my first time doing this and I don’t think i can finish it honestly… Is nausea / vomiting a normal side effect???

so tmr will be my first ever infusion and starting of methotrexate too. theres sm of anxiety in me that how will i cope, how will my body react to it. i feel so anxious knowing im doing this alone because i feel like the only support i have is mainly from my healthcare team. honestly what can i expect for my first infusion? i know im going to be admitted to do the infusion but how would it be... im also on rifampicin for latent tb so im not sure about how my body will take it. im js so so scared, i have been struggling to sleep from thinking about this.

One bite into my pancake this morning i started getting really bad stomach cramps.

I kept eating, assuming it was a coincidence since I get abdominal pain randomly... But could the pancake have triggered pain that quickly? I didn't get sick but had a lot of pain.

Daughter (teen) being investigated for IBD/crohn’s. GI does fecal test first since least invasive and would determine if moving forward with more invasive testing is needed. I just got the test back today. Read that everything under 50 is normal. Over 100 is Pos. So what would a 72 mean? Would that hopefully more than likely rule out crohns/IBD?

Symptoms: Mildly elevated CRP + SED Cyclical constipation/diarrhea SI joint effusions Joint pain mainly hips, lower back, radiating Morning nausea Extreme fatigue Abdominal pain/cramping

Thanks.

I got diagnosed (albeit with ulcerative colitis but doctors now say it's Crohn's) when I was 13 and when I was in the hospital during that time I thought I was going to be fixed and any more flare-ups or anything like that won't ever happen again. But then a few weeks later when I got diagnosed my dad said I can't have popcorn ever again or any other foods with high fiber. And then I had to take all these pills and medication on the daily basis. It's been half a decade since then. It's depressing how you can be young and decent shape and suddenly experience anemia and fatigue and all this other stuff and then you're in the hospital and then be told you can't eat certain foods anymore or do certain things like you used to. Anyone else?

So about a year ago, right around the time my genetic heart failure started flaring up for the first time, I (20F) started getting these horrible “attacks” or “episodes”

It would start as this pain in my very lower belly area, like right about the groin. I would usually mistake it for having to fart really bad, or period pains, but outside of my period?? but then it would keep getting worse and worse and worse, until my entire body goes ice cold, and I vomit. It usually happens if I haven’t eaten or drank for many hours, so at night or early morning.

I will be vomiting up whatever stomach acid I have in me up and then continue to dry heave and gag to the point where snot, tears and sweat will be dripping into the toilet.

Then comes the worst bit.

I will have this absolutely excruciating pain, the worst I have ever felt, come in waves of not being horribly bad for like 3 seconds, and then being extreme for about 10 seconds

I’m talking I can do nothing but writhe, I will be bent forward as far as I can, unable to stand, just clenching my teeth and groaning and sometimes even screaming. I can hardly breathe, im shaking, I go completely pale and last time I burst a blood vessel in my cheek in an almost healed mosquito bite.

Now, I haven’t experienced super painful things in my life but I am not known to show if I am in pain. Even as a kid id never cry at any scrape or bruise. I would say my pain tolerance is not weak.

Anyhow, this pain usually lasts maybe 10-20 minutes, before slowly fading into the night, where my mother will have to help me wobble into bed where I will be out of commission for at least 10 hours, and even after I wake up it doesn’t take long before I’m ready to pass out again.

It’s never followed by any bowel movements or gas, but it does kind of hurt to pee when it happens. The only thing that helps the pain in anyway is keeping my body moving, if I sit completely still, it’s horrendously unbearable.

I had a poop sample taken, it showed infection signs, I got a colonoscopy, they found a little bit of irritation in the very start of my small intestine, but nothing that looked bloody or anything. They took samples, and I had a call with my doctor a few weeks later telling me I have crohns. In January of this year I was put on Adalimumab?? Amgevita something.

I take laxatives daily due to always having constipation otherwise, despite a very healthy diet and good hydration. I have a bit of stomach acid problems but not really all too bad. Other than that my stomach never really hurts other than when I’m hungry. I’ve found no foods that seem to trigger it, it doesn’t seem to be stress triggered, and I rarely drink alcohol, and I don’t smoke nor do drugs.

The medication has not helped one bit, if anything the attacks seem to have gotten even more painful lately, despite my heart condition being somewhat stable right now.

I have talked to many gastroenterologists and doctors about this but they always just think it’s a bit strange and tell me to wait and see if it still happens when I drink a bit more water, eat less of this less of that, etc.

I have to take a poop sample soon, so I’ll see if they figure something out then… im exhausted 😭

For those of u who have had surgery &/or an ostomy

I’m wondering what signs / symptoms you had leading up to needing surgery or there being a serious problem.

I tend to be pretty unaware of what is going on with my body. I’ve heard stories of emergency surgeries etc and the uncertainty makes me so anxious. I dont want to do more damage by leaving an issue unattended (not rn but hypothetical)

I’m confused as to how you / i will know if something is wrong. - Is it sometimes extremely sudden? or do you have symptoms leading up to an emergency situation that were ignored / unable to be evaluated by doctors so it became worse?

Similar question but also, how do you know when you should go to the ER or see a doctor?

I just wanted to come on here and say that after 7 months of 40mg and multiple failed tapers, I’ve taken my last prednisone yesterday! It might sound silly, but I genuinely didn’t think this day would come. I was convinced I was trapped on this steroid forever.

If you’re someone that feels stuck on prednisone and reading this—don’t give up!!!

Feeling nisserable as have been to the toilet about 15 times in the last 9 hours. At what point would you go to the ER am able to drink so having electrolites.

Does anyone have any thoughts on whether it's advisable or not for someone with Crohn's disease to take certain supplements (in my case, fish oil, magnesium, glycine, probiotics)? I'm on Skyrizi and, fortunately for now, my Crohn's is in remission. I asked my doctor this question but didn't get much feedback other than a multi vitamin may be the way to go instead, but she didn't say not to take these supplements either. I haven't had any side effects from taking these supplements, as far as I can tell.

Ever since what my doctor suspected was a big flare up I've noticed that my body temp is so out of whack.

Like I'll wake up freezing so I'll put a sweater on, barely five minutes later I'm sweating so bad you'd think I had been working out so I have to strip the thing off, but then five minutes later I'm back to freezing and have to use my space heater.

Then there are times where I'm somehow both sweating and freezing. Like I'll visible sweat on my back but the lower half of my body will be freezing that I need socks and pants on.

And don't even get me started on the night sweats.

I’m a 26M currently under evaluation for Crohn’s after developing three confirmed anal fistulas:

• One on the inner left butt cheek
• One on the inner right butt cheek
• One at the top of the gluteal cleft (midline)

That top-midline location is notable because I previously had a pilonidal cyst in 2017, which led to:

• 2018: Emergency I&D for a pilonidal abscess
• Later in 2018: Flap surgery for pilonidal disease (wide excision with skip advancement flap closure)

Since then, things were mostly quiet until:

• Late 2023–2024: Recurrent inflammation thought to be a cyst, but eventually diagnosed as a perianal abscess
• Follow-up with a general surgeon confirmed fistulas and referred me to colorectal surgery

Current status:

• Colonoscopy scheduled for April 18
• Stool and blood samples submitted
• MRI pending depending on colonoscopy outcome
• Seton placement expected as the next step to allow proper drainage

No current inflammation was noted during my CRS exam, and notably, I’ve had no GI symptoms so far — no blood in stool, no abdominal pain, no bowel issues that I’m aware of.

Someone suggested trying a gluten-free diet in the meantime, and I’m curious if that’s been helpful for anyone here during early or diagnostic stages.

If anyone has gone through something similar — especially those who:

• Initially presented with fistulas/abscesses but no GI symptoms
• Had prior pilonidal disease before a Crohn’s diagnosis
• Have experience with seton placement
• Tried dietary changes like gluten-free with noticeable impact

—I’d be interested in your input.

Thanks.

I feel like everytime i eat candy, chocolate or bread, my stomach gets inflated and i look like i have a big belly. After some gas it will return back to normal.

I’m a mild case of Crohn’s. Started in January, quite literally overnight, with overwhelming fatigue and increasing heart rate. A few weeks in is when the diarrhea a few times a day, and on and off right quadrant pain started. My appetite basically disappeared overnight and I went from 143 lbs to now 122lbs.

After stumping my internist, bloodwork was great and normal except for a slightly raised IgA and total neutrophil count, sent to GI where I got scoped beginning of March - endo and colon. They found two small ulcers in the terminal ileum. Largest was 5mm.

I haven’t been officially diagnosed yet because I was also on prescription strength NSAIDs (two herniated discs), antibiotics (strep throat), and GERD flare up at the same time. She needs time to see if it was a storm of overlap causing the ulcers or Crohn’s. However, we did a “test” and did a week of high-dose PPIs to clear the acid and see if that gave me some improvement. For a few days the diarrhea started to solidify, and was only going once a day. Then in a week everything swung back and I was immediately put on budesonide as that wasn’t a good sign. She said I need to be rescoped at six months.

I’m on day four of the meds (they worked starting 24 hours in) and somehow already caught a cold. My husband and kid cleared theirs in a day. I’m on day three of this cough. Where I am fortunate is I can eat anything - if I had an appetite. Somehow I now have two throat ulcers. Don’t know if it’s the budesonide or it’s advancing Crohn’s?

My four year old has her birthday party today. I’ll be wearing a mask the whole time as you don’t know what kid has what. They’ll be having pizza and cupcakes. I’m too terrified to eat any of it. What if I get food borne illness from any of it? What if I get c diff?

We have a small quarter size patch of mold on our bathroom ceiling - what if I inhale a spore and get sick? We are supposed to take my child to Disney later this fall/winter. What if I get wet from a ride and get an infection? What if I eat food there and get food borne illness?

I know biologics are likely my next step. I’m so scared of developing cancer. I am already seen yearly at MSKCC for frequent mole checks and removals because I lean towards dysplasic moles. I also was always the girl growing up that when everyone got sick, I got it the worst. Maybe that should have been a red flag.

I live in NYC, but we are supposed to move back to our home state in July/August. That’s when I’m supposed to taper. I may be tapering and moving out of state at the same time. What do I do?

I’m terrified to eat anything - takeout or even some foods at home. I’m terrified to live my life. And more than anything I’m terrified of something happening to me young and my four year old being left behind with my husband. My greatest fear before all of this was getting cancer. The fact that statistically it’s now higher has me anxious and fearful about half the day.

Does anyone else go through this? How do you get past it?

So in my town in the US we have a couple of big GI practices and I’ve years. inbeen a patient of one of the doctors there in the past. I wasn’t happy with my treatment plan and switched over to another gastro doctor in a stand alone practice. And my new gastro seems to be wanting to go to the most expensive meds at the highest dosage even though I haven had any flairs in years. So I wanted a second opinion but it seems like everywhere I call the know I’ve been with that first gastro practice and they say my previous Dr there has to ‘approve’ me to see a different gastro. I even found this when I called a separate practice in town. Somehow they could see my history and said I had to get approved firm that last Dr to change.

I want a Dr that can explain to me what’s going on and to have a good bedside manner to help me feel comfortable. How is it these gastro doctors ‘own’ patients to trade, keep, etc? I’m sure it benefits the doctors, just amazed and frustrated it’s allowed to be like this.

My nurse advised I eat little and often.

Reality is i tend to not eat much/at all til 3-6pm then I overeat and i feel shite prior to eating so i avoid eating so im in a catch 22.

Any tips please on how to force myself to have small breakfast, snack, small dinner, snack, tea, small supper

Hello, I was wondering if anyone here is on any weightloss injections like wegovy? My pcp prescribed it for me, I have express scripts and they are forcing me to go through with their program omada that tracks my weight via their scale and have to do more tasks.

However, I'm having a hard time getting any progress from express scripts and omada, because they say they can't create an account for me.

Anyone else have express scripts? I am wondering if my GI dr can prescribe wegovy or something similar without having to go through omada and having to do all their tasks by tracking me. I have blue cross blue shield and prescription is express scripts.

So since i had covid in 2022, i started having pain before going to the toilet, where sometimes i have trouble trying to poop but when i poop i start having diahrrea and have to stay on the toilet even more time but my pain gets better.

Male/36- started having right lower abdominal pain in January- went through ultrasound, blood work and fecal test- negative, then CT and showed clear, finally had a gastro get me and MRI and they show a severe stricture in my mid-ileum 3-4 inches currently inflamed. Waiting two weeks right now for another colonoscopy (one 3 years ago showed nothing abnormal). Doctors obviously suspects that I have Chrons, possibly having been silent Chrons for the most part. I may have had some symptoms off and on through out the years but nothing crazy.

Has anyone experienced this with a severe stricture at diagnoses or in the course of their disease? Are severe strictures able to be calmed down with the meds or will I need the surgery. I am terrified of the resection and recovery. My life feels so out of sorts and I’m having trouble coping.

Any stories advice welcome and appreciated.

Hey guys, Unfortunately I've recently been diagnosed with mild Crohns disease in the small bowel, and my gastroentrologist has recommended taking an 8-week course of budesonide 9mg daily. Before I start taking it, I was wondering if anyone could share their experience with it? I'm a bit terrified of steroids & immunosuppressants, as I'm someone that usually gets sick quite a lot (colds). The doctor told me that this medicine is not systemic and it's effect is rather local to the gut.

Any experience, benefits, side effects etc. you'd like to share would be greatly appreciated. Thanks.

Has anyone switched their child to online/cyber school? My daughter has had the flu once and strep four times this year. I don’t think I can handle another round of strep. She’s constantly sick with something and I’m wondering if removing her from school would help. I’m at my wits end.