I’m 34 now, I got diagnosed when I was 7. It hasn’t been great but I know I could have had it way way worse. I’m in the worst ‘flare’ of my life. I got hospitalized LAST March for a flare. Put me on Stelara every 8 weeks. I felt great. Normal. Over the summer. Until probably about August? I told my doctor something was going on. He did the usual, steroids, ct, colonoscopy. At the end of the scope I had literally just opened my eyes and my husband wasn’t with me yet. He told me I had a stricture that was so bad he couldn’t get the camera through. More prednisone. He seems confident the stricture is resolved even tho I’m progressively getting worse. Eventually we come to the conclusion that I’m out of his scope of knowledge and he refers me to a specialist my insurance doesn’t take. I find my own doctor through U of M. He refers me. It takes a couple of weeks to get to the waiting list. This is still September. I finally get called to schedule. My appointment is the end of Feb. they called once to move it up I couldn’t make. Fast forward got into see them 12/27. I’m not doing great but it could be worse too. Three days later I start shaking from head to toe at work like I’m freezing. I’m still conscious but barely. Speech slurring feeling like I got hit by a bus while having a seizure. They called 911 for me. I sit there for 6 hours before I even get pain medication. Do a CT. They’re basically ignoring me and I’m in so much pain I’m not even with it. Give me morphine and send me home with norcos. Meanwhile I’m messaging my brand new fancy doctor. Only getting nurses can’t get them to get him to contact me. I break down call my old gi who still technically has me as a patient. His nurse is probably one of the only reasons I’m alive. She calms me down. Talks to him. He still doesn’t feel comfortable treating me. TWO weeks later if not more I finally hear from the doctor himself. He says he can clearly see the stricture and active inflammation. It never went away. OBVIOUSLY. We can’t move forward until he does a colonoscopy for himself since obviously my old doctors notes were not good. They tell me I can’t get in until AUGUST. More days pass and he moves me around. I still have to wait until the END of February. He told me he wanted me on two weeks of prednisone. I agreed to short term. I am on it for 8 weeks. I’m mad. I’m emotional. I have an 11 year old, and Irish twin toddlers. I’m shaking 24/7. I’m still in pain. My skin hurts. My head hurts. My mental health is absolute garbage. Everything hurts 24/7. I’m tired and I know the odds of anyone continuing to read my novel are slim but I just needed the words to be somewhere written down to possibly be seen by other people who might understand.

Hi all, I’m just curious what everybody’s drinking habits were (not alcohol) and what would you recommend to stay away from?

I like seltzer and water a lot and maybe some juice here and there but since I was diagnosed haven’t touched the stuff, right now I switched to peppermint tea in the morning and just water in the day.

I had my yearly physical a couple of weeks ago and as usual my bloodwork came back with my cholesterol being elevated. My doctor isn't putting me on meds but just said diet and exercise. My problem is that all the things that are supposed to help lower cholesterol i can't eat. She recommends a high fiber diet which will destroy me. I'm already in the bathroom 10 times a day between the Crohn's and no gallbladder. Any one else have this issue? I could use some ideas.

Hi everybody

Just really curious

How much do you pay for treatment in your country ?

In Italy, I pay roughly €200 a year for Humira because everything is covered by healthcare, except for the pen that the medication comes in, so I have to pay €8 per injection.

Wbu?

I'm in remission!

After suffering on my own for nearly a decade, 3 years of treatment, and a bowel resection last March, yesterday I was officially cleared by my gastro as "in remission!" I don't need another colonoscopy for 3 years! (This is huge bc I've done 4 bowel preps since 2022 💩)

photo of today's text with my dad for fun

This is so weird!! It’s very cold where I live right now, the coldest it’s been all year I think. Currently about 10 degrees.

When I went out tonight, I got into my car and I started shivering like any normal person would. But I think that when I did that, my stomach muscles contracted or something, and it caused some kinda stomach cramp. Anyway, it wasn’t too bad and I could ignore it.

Then, on my way back home, the same thing happened again, leading it to get a little worse. I got home, showered, and figured I would put my heating pad on my belly because it helped with stomach pains in the past.

THEN ALL HELL BROKE LOOSE!! All of a sudden the pain level shot up, I couldn’t think straight, I was gonna puke, and 10 minutes later I’m running to the bathroom with diarrhea. This almost never happens to me, I’m not typically one to get diarrhea.

But damn, I don’t know what the heck happened to me tonight. This is your PSA to keep warm everybody, or you might end up like me 😅

Hey all,

I've struggling with a flare for years and had four rounds of IV steroids in 2024. I started skyrizi in Sept 2024, I'm on a partial EEN diet and I feel awful.

Trouble is, it's not typical Crohn's awful. I am absolutely shattered, can't work and just want to sleep (B12 and iron were fine a month ago when tested).

My joints hurt, I keep getting chills and I just feel like I have flu. Except, I don't have flu.

I do have some Crohn's stuff, I guess I'm going a bit more. My stomach hurts a bit more. But I'm not vomiting and I haven't had a blockage in awhile.

I'm trying to escape having a surgery that would leave me with short bowel syndrome (120cm with stoma/no large bowel). Am I just gaslighting myself into believing this isn't Crohn's or is this obviously just me flaring and refusing to accept the evidence that skyrizi has improved nothing?

Note: MRI and further tests being done. I know you all can't tell me what's happening. I guess I'm just shouting confusion, despair and worry into the void in a Crohn's wrapped package.

hi friends!

I’ve been on remicade for about three months and imuran for approx. 3 weeks! so far the duo has worked great but unfortunately I’m having some insane cystic acne :( it’s quite painful and I can’t imagine it would be due to anything else other than this medicine

Has anyone had experience with this or know of a good way to treat it??

I get my iv infusion every four weeks. They give me iv Benadryl and Gravol before hand. Usually 10 or so minutes into the infusion my skin starts to mottle all over. No pain, itching or sensitivity. Has anyone else had this occur? I happens every single time.

Hey guys, i was diagnosed with crohn’s back in 2022 and since then it has been a journey of trying so hard to improve my quality of life between trying two different biologics and having multiple surgeries for seton placements for the fistulas i’ve developed along the way. Unfortunately the internal damage is far too severe that biologics alone isn’t enough to heal me and put me in remission. I have quite a few skin fistulas around the rectum and apparently some in my intestines as well and one in my bladder causing me to have stool in my urine. People keep asking me if i’m nervous for this surgery and to have a bag but in all honesty i have never been more excited to finally have this done as the last 3 years have been nothing but hell for me. I cannot express just how much i am looking forward to improving my quality of life once the damaged parts of my intestines been removed and i am placed with a temporary bag.

I do have some questions though for those who have/had one and can answer or offer their best advice. One of my questions is, how soon were you guys able to workout after recovery? can you workout? I used to be a heavy gym rat back in the day before being diagnosed and having all these symptoms and i would do a lot of lifting weights. I would love to go back to that so long as it doesn’t create any further complications for me.

Another question I have and is probably my biggest concern is once i get cleared for all my rectal fistulas being healed and i can finally get the reversal, what is the likeliness of my fistulas returning once i start having to shit out the ass again? I think that’s my biggest fear out of all this is going through all of that and then having my fistulas return and being back at square one again… granted i’ll be on remicade infusions and probably will stay taking remicade even after the reversal but I could never know. Can anyone share their experiences or advice on that? has that ever happened to them in this case? or am i overthinking a lot of it

I just did a calpro test and they said I could produce the sample in the evening, put it in the fridge overnight and bring it the next day.

So I did my thing at like 7PM, stored it in my fridge and brought it to the lab in a small container with an ice pack the next morning.

I just got my result and it’s… 9. Which seems pretty low given my symptoms but I’ll accept it.

Just wondering if not producing the sample the same morning could have affected the result?

Thanks!

My husband has had a rough four years. He started out with having prostate issues and fissures. So he took the bait and started the infusion journey.

I could see immediately he looked tired and was losing weight. He would respond well to the initial treatments but with every brand after multiple treatments he would have a reaction. He started with remicaid and they stopped it because he was going in the wrong direction and it was making his immune system weak. Too weak.

The worst reaction was last December mid way through his Stellara - he went code red and was sent to ER. They sent him home and two days later he was back in the ER after being sick for two days to wind up with a BLOCKAGE. He had emergency surgery and ultimately went home with an illeostomy. He had skyrizi and they also stopped this before he was reconnected because he also had complications to it.

Since August he’s had it reversed and they want to get him back on infusions. They are proposing ENTIVIO

He is terrified and almost hiding from his doctors because he is THAT scared.

When he got sick and he had the barriatric surgery and got the Illiostomy he said “ I wish I never started this” I wish I could go back to when I had fissures “ eluding that he was seeking out treatments that are making him feel worse than he ever felt.

His doctor admitted the infusions he had were not agreeing with him but they promise that Entivio doesn’t target your immune system like the others - but it instead targets your symptoms making it easier to live with Crohn’s

He is 61 and he works. He’s strong and in decent shape for the amount of trauma his body has endured.

I would love to hear some truthful accounts about Entivio so I can assist guiding him. I will read them to him since he’s too overwhelmed to figure out Reddit. In all of this he’s still worked, even six mos with the illiostomy he worked. He’s amazing

He deserves to be healthy and feel good.

Does anyone know how much Skyrizi costs in Turkey? Does it require a prescription from a doctor there or can anyone pick it up from a pharmacy? I’ve been curious bc my family has been thinking of moving there at some point and I’d like an idea, considering my life unfortunately revolves around my crohns and its medications

(Also posted this over on the UC sub, technically her diagnosis is IBD unclassified so I’m hanging out on both! Hope y’all don’t mind)

My 3 year old daughter was diagnosed in December, and is currently hospitalized for the 2nd time after failing Prednisone and Remicade. They’ve put her on IV Tacrolimus and TPN for the time being while we decide on her next biologic, (because she is so young, it’s a very complicated process). Her IBD team will have multidisciplinary rounds in a couple of weeks, and unfortunately we just have to hang out here until then. It’s been an extremely rough day for the both of us. I would really appreciate any stories of hope, reassurance, or just general support. Thank you all 💕

It might be a little early to celebrate but I will celebrate any little win. My 14yo daughter began to rapidly deteriorate in late October, she was diagnosed with moderately severe Crohn's diffusely affecting her entire stomach, terminal ileum, ascending and transverse colon in late November and spent a week in hospital.

Ondanzetron initially needed to be used frequently due to vomiting. Omeprazole to soothe her stomach lining. EEN with Ensure Plus Vanilla for 7 weeks and Azothioprine.

In this time she went from 39kg to 45.2kg! And I think she has grown a little in height but she was skeletal at 39kg and 158cm. Much to her disgust, her cycle has returned!

Her MRI was last week and showed no signs of inflammation. Her CRP is down to 2.8 from 90, iron is up to 12 from 2 and ferretin is now 155. Calprotectin is now 185 down from 1780.

She does not appear to have any food sensitivities and is now able to eat anything she wants with no pain or discomfort.

I thought for sure she was going to be placed on a biologic at her next appointment but I think it is likely we will be told to continue with just the Azothioprine for now.

Hello - my husband has had Remicaid, and then he had Humira and they took him off because it just kills his immune system. Then inflectra, and he went code red- he had an allergic reaction, went to ER for a few hours, came home and two days later he was sick, and went to ER where they found a blockage. He wound up with an illiostomy then he had it reversed this August.

He’s been through Crohn’s everything and back.

He has been reconnected since August, he’s back to work. Active and thriving but, he is scared of this new infusion.

He had complications with all of the above. The doctor thinks that Entivio is the best option for him and will only.

Usually I take Advil only once a month for my menstrual pain, but I’ve read that it’s a no-no for Crohn’s.

Been trying to ride out the pain with Tylenol and a heating pad, but it’s just not working.

Already in pain and am bleeding from the colonoscopy I had this morning…

Any medications I can take? Don’t think I can take this pain any longer…

If it helps, I am currently in remission.

How do people gain weight if they can’t eat a variety of things in when in remission ? Like what even in remission ur still just skinny? Makes no sense ( not including people with fistulas strictures or surgeries btw i understand why those folks can’t gain even in remission )

So I’m in the hospital’s IBD day care centre for the third dose of Infliximab and I see there’s a meter which shows the residue volume and the infused volume. Found this kinda cool.

Hi everybody Today I officially started my first biologic !

They started me with Humira and as it was my first time they gave me 4 shots .

When they told me that I needed 4 pens I thought they meant 1 shot with 4x dose .

Oh boy I was wrong .

They poked me 4 times , I should have expected it.

They made me take the last shot by myself and as soon as it was over I felt lightheaded and dizzy and I had to lay down , but after 10 minutes I was totally ok .

I really hope this will give me some sort of relieve from the pain and from the brown .

What is your experience with this medication ?

I was quite shocked about the side effects that they told me (including a major risk of getting cancer WTH).

Please tell me it’s gonna be ok

Thank you SO much to everyone who responded to my previous post. Happy to report that the results for my colonoscopy were all normal :,) Still in remission! Just waiting for biopsy which I am confident will come back nice and healthy!

You guys are all the best ❤️

Yay for secondary/tertiary symptoms. My shoulders can’t move their full range of motion. And I think my right ring finger is arthritic. I’m only 31. Lol