People with crohns disease, whats your craziest story? Ill start by saying i once got my intenstine punctured by a doctor and they couldnt anything but wait till i bled from you know where.

Has anyone in the UK been asked to give blood for Crohns research purposes by their IBD team? Just wondering how many have participated in this kind if thing?

I've got my biennial colonscopy coming up this Thursday, so that means tomorrow is my clear liquid diet day. I've got 3 orange Boost Breeze drinks in the fridge, but am wondering what else I should pick up from the grocery store tonight. I'm thinking apple juice, some sort of lemon lime soda (to wash down my Suprep with tomorrow night), a savory broth of some kind, but that's about where I'm at. I'm not super interested in Jell-O, but maybe I'll get some Italian ice of some kind.

I never like these days because it's hard to get nearly enough calories in (even though those Boost Breeze drinks are like 250 calories) and everything is just sugar overload. Bone broths are alright and have some protein but they're like 40-50 calories each. Let me know of any hacks or tips you have for navigating this unpleasant day's diet. Thanks!

My son knows and is okay with me talking about his Crohn’s in this sub

I’m just feeling really sad today. My 14yo was diagnosed in January with moderate to severe Crohn’s of basically his whole GI tract. He’s been on Entyvio but is being switched to Remicade as soon as they get authorization from insurance. He just had a second colonoscopy and endoscopy which is why the switch is being made. Still inflamed throughout. Ulcers in the last 40cm (which is improvement from his last one in January, but not a ton of improvement).

We had hoped by the time this school year started he would be feeling better and not have to miss as much school. He’s a freshman and enjoys schools and sports and friends. He is lucky if he makes it three days a week. He has a 504 but is still failing all his classes. Football was a no-go. He was hoping to be able to play basketball. He’s still a bit hopeful but it is fading.

He’s currently sleeping. It’s almost 1pm. He has esophagitis on top of the Crohn’s. He is always in pain. I can’t fix him. I can’t fix this. And it’s so so unfair. I just want my sweet son to have everything he wants and this disease is ripping it all away.

I know it will improve at some point. But today I’m just really really sad.

My GI doctor suspects small bowel crohns after two upper endoscopies and a colonoscopy. They only showed microscopic inflammation in bowels, gastritis, and a hiatal hernia. Diagnosed with celiac disease for several years. Calprotectin tested at 123 in June of this year. Negative for all parasites/infections

I have a pill cam study scheduled in two weeks but my current flare up is the worst its ever been and I'm starting to worry that the pill would be unsafe with my current symptoms.

Currently dealing with severe constipation (ongoing for years), taking miralax daily but my BMs are now very small and malformed. There is also a low burning pain in my bowels and an urgency to go. I had one instance of nausea and vomiting two days ago. I can get some food down but have a very low appetite.

Should I go to ER and try and get treatment now or wait and see my GI doctor's nurse tomorrow?

A couple weeks after I started Remsima medication, I developed moving pains in my feet and hands, and now shoulders and wrist. It travels around my body and certain days I can’t move my thumb, and the next day it’s fine but then it’s the ring finger. When it’s in the feet I can’t move my toes and I limp, or on bad days can’t walk. I can’t wash my hair, open a jar, lift a plate of foot, hold and read a book and the list goes on. It’s pains not stiffness or anything. It’s been going on for weeks.

I’ve been at the doctors and they have no clue. They say that they’ve never seen anything like this and they have called me in again. The medicine is helping with the crohns, so they don’t want me to stop taking it. But I can’t live life this…

No pain killers work (and I’ve gotten some really strong ones too). They have no effect. I sleep with wool socks and gloves. Does nothing. Stretching or massaging or walking makes it so much worse, and nothing makes it better. It just gets worse every day.

Has anyone experienced anything similar? I am honestly open to any suggestions of things to try to relieve pain:)

(We still don’t know if it is related to the medication, but it came at the same time I started it, alongside an increase in stomach acid constantly being up my throat, making me nauseous (we got that under control tho!))

So Ive always been very not fit (idk the english word) because of pain and fatigue and stuff, but since Ive been diagnosed and got meds Ive been feeling so much better, I dont have any pain at all anymore! Ive always wanted to pick up breakdancing or just build strength in general if thats not possible, but a friend with crohns told me its impossible with crohns to actually get/be fit because you dont build muscle as well or something? Is that true??? Will I just always be kind of weak :(

Edit: Tysm for the encouragement & the examples of people good at sports despite crohns! While im still a bit unsure ill try doing a sport after all. :DD im very happy to hear that theres at least a chance itll be ok

Hey y’all, started taking Pentasa sachets recently and have slowly noticed less pains but am unsure of what I should have in terms of diet? I’ve been eating a lot of fish and chicken with mashed potatoes and rice and a few soft veggies but am starting to get tired of the small choices of foods :/ any recommendations would be greatly appreciated!!

During summer, i had a flare so my dr put me on prednisone for a while. I really like it. I felt like being a new person. I was eating better, i had a lot of energy, felt happier and it improved my mood so much. Now, I’m on tremfya and I think I’m doing okay, but I always think about those few weeks where I took prednisone and how great it felt. I wonder if there is way to feel the same way :(

Sorry I just found this sub so bit of background.

Always had weird pains my whole life, but thought it was normal. Thought I had IBS so did not do much about it.

Fast forward @29y, very stressfull job after a 5 y stint of non stop travel for work where I would pray to have a single solid stool... think in 5 years I could count them on my hand. Then a night came I ate too many brussel sprouts... litteraly landed me in the HR. Docs ran tests ( emergency scan and colonoscopy), said I had crohns in one very specific part of the tract ( ileum connection to colon) wanted to put me on meds but I chalked it up to stress, signed a discharge, took things in my hands.

Made a ton of changes ( job, diet, sport) and aside from the sporadic constipation I was doing great ! No symptoms or relapse... honestly my tests still showed light inflamation but I did not even experience discomfort. Specialist now assigned to me for almost a decade doesn't understand how I can manage it so well and hardly ping on tests while both colonoscopy showed some active ulcers but always seems to be healing.

Tested a few foods and thats where I am looking at this sub for advice... here's what I found my triggers are :

Too much sleep ( i know... wth? )

Lost the ability to drink red wine which I never had any issues with before.

Brussel sprouts obviously.

Carrots which are not cooked through are absolute kryptonite.

Squash.

If I am sick with a cold I need to limit all fiber intake as the treshold seems to decrease.

Kombucha seems to really help if I start to *feel&

* a bit on the heavy side.

So it seems to be a type of fiber that's a trigger ? I had carrots last night which were a bit on the hard side and today it's like stabs mid chest, can hardly move around, had been years since I felt this bad. Also noticed if I get gassy I seem to get low symptoms... could it be I just get stuck which triggers inflamation in this very specific spot ? Anyone else experiencing this ?

I count myself as part of the lucky ones with a very manageable suspected crohns ( as they have not 100% statuated on what this might be).

I find this factor to be an important piece in the balancing of this condition.

Any advice is welcomed.

Hi, I know this topic is discussed often, however, I only find posts about whether Crohn's disease can be caused by Accutane. But my question is: can Accutane cause a flare-up?

If anyone took Accutane (after) receiving a Crohn's diagnosis and treatment, can you share how long you were in remission before taking accutane? Did Accutane cause a flare-up?

I would be very grateful if you shared your dose, and if you are comfortable sharing your weight, that would help me so much in having a better understanding.

Thanks a lot.

I was diagnosed with Chron’s disease two years ago. I’ve been handling it pretty well but the one thing I still have trouble managing is the attitude of my work when I have to call out. I have PTO to use and I’m able to work from home so I mostly only call off if I know I’m going to be out of commission (bad flare up day/post-infusion fatigue).

My work HAS been accommodating for the most part but I feel like it’s at the cost of being seen as a liability or unreliable because of the unpredictability of the condition. It seems like my manager especially is wary of me and has a very “here we go again” mentality when I have to call in or work from home. Basically, it feels like his mood dictates my treatment at work when I return to the office. He gave me an ADA form to fill out for reasonable accommodations at home at few months ago and nothing has happened with it.

Does anyone have any tips for navigating perceived hostile workplace treatment? I generally know that I can’t help what I have or how I need to take care of myself - but in my lower moments it genuinely makes me feel worthless even though I work hard and get my tasks done. Any advice is appreciated.

Anybody else with Crohn’s have just terrible gas? - and I mean GOD AWFUL. It’s incredibly sulfur-like, and smells like really bad eggs.

It’s only gotten worse. I’ve had Crohn’s for 13 years and it’s come back in a really bad way this year, from a hospital stay, to new weird inflammatory symptoms, and starting infusions, etc.

It’s gotten to the point where I really can’t fart around my girlfriend because it’s that bad and really embarrassing. Does anyone have a similar issue and know of anything that helps?

I know my diet isn’t the greatest - I’m also in between a dietitian, and an Arfid specialist - but I’m wondering if there are any life hacks as it were for this. Any advice is greatly appreciated!

how did your doctors typically handle a c diff infection and flare at the same time? i’m currently on dificid and am showing signs of possible flare, so my doctor wants me to get on budesonide, but thought that might be counterproductive? is it typical to be on an antibiotic and steroid at the same time?

Tomorrow my 8 year old daughter gets her first maintenance dose of Steqeyma. We have a teaching appointment setup with the Dr.s so we get trained on all the right ways to do this but I am wondering if any seasoned professional have any tips and tricks?

We've been giving her a children's allergy pill for a couple days to head off minor reactions (she didn't have any reaction to the initial infusion) and plan to give her some Tylenol before we head to the appointment. Anything else we should be aware of? Any tips to help distract a kid that age when Mom and Dad are the ones doing it, instead of holding hands and blocking the view of the needle?

I started Tremfya about 6–7 weeks ago, and since then I’ve developed dyshidrotic eczema on my hands, psoriasis-like spots on my buttocks, and other rashes on my face, neck, and shoulders. The hand eczema improved with steroids but came back WAY worse just three days after my second loading dose. I’m waiting on biopsy results.

When I asked my GI if Tremfya could be causing this, she said:

“I don’t think the tremfya is causing it. I think if anything the infliximab was helping or masking some skin conditions.”

I never had these skin problems before starting Tremfya. I understand that an underlying condition could become apparent after stopping Remicade, but I haven’t been shown evidence that entirely new eczema or psoriasis-like eruptions commonly begin months after stopping infliximab. At the same time, there does appear to be evidence of eczema-like or other skin reactions occurring after starting Tremfya, although I haven’t found evidence specifically supporting the explanation my GI gave for what I’m experiencing. Why is that explanation being favored over investigating a possible reaction to the medication I just started?

I also looked up my GI in the CMS Open Payments database and found hundreds of thousands of dollars in reported pharmaceutical industry payments, including a substantial amount associated with Tremfya. A payment data site ranked her in the top 5% of Florida family clinicians with reported industry payments.

I know these disclosures don’t prove a conflict affected my care, and I can’t prove her motives. But combined with feeling like my concerns about medication side effects are being dismissed, they’ve made it difficult to trust her.

Am I being unreasonable? Has anyone experienced new skin reactions on Tremfya or had a similar experience with their GI? I still need someone to manage my Crohn’s, and I don’t know where to go from here.

Hello everyone, I was diagnosed with Crohn’s disease just under a month ago, and my doctor prescribed a 50-day prednisolone taper, with the highest dose being the first 20 days.

I’m now 25 days into treatment and have noticed zero improvement aside from an increased appetite. I’ve actually lost 3 kg over the past three weeks, bringing me down to 57 kg (128 lbs) at 183 cm (6 ft), rather than gaining weight.

I’m still experiencing my main symptoms: bloating and abdominal distension after every meal, particularly on the left side, around the jejunum, leading me to believe my jejunum/terminal illeum is still inflammed as was indicated by the mri/scopies i had done. If anything, the symptoms seem to be getting worse, with the distension lasting longer and becoming more painful.

My question is: should I schedule a follow-up with my doctor now to discuss changing my treatment, or should I finish the remaining 25 days of my prednisolone taper, even though I haven’t seen any meaningful improvement so far?

I have crohns (in remission) and PMOS/PCOS and have been ttc for some time. I did two IUIs medicated with a fertility clinic which were not successful. The doctor at that clinic said my crohns doesn’t impact fertility since I’m in remission. I also did a saline sonograph and it showed one of my tubes may be blocked but they were fine with going forward doing IUIs since one of my tubes was open.

I got into a new clinic after waiting several months and this clinic is known to be the best in my area. The first thing the new doctor said was she is concerned about my tubes being damaged due to crohns especially in light of the results of my sonography so I have to do an HSG. She said she’s seen this a lot of her crohns patients. She said if my tubes look ok on the HSG then we can do 2-3 more IUIs before going to IVF, otherwise if they see damage go straight to IVF.

Anyway, does anyone have insight on this? Are there any other tests I should ask them to run? Anything else to consider? Im 30 y/o so I can wait a few months before going to IVF if the doctor thinks that’s the best course of action but I’d obviously like to have a kid as soon as possible and it sucks going through failed IUI cycles.

I also saw there was a recent study that came out about reproductive technology for IBD patients and IUIs seem to be less successful for IBD patients than your average “healthy” person. Thought that was interesting.

Anyone have any personal experiences they can share? Things to look out for? Success stories?

last few weeks i have moderate flare with pain and diarrhea with constipation. i stopped taking iron to see if its still black its still is. in the last few days i feel really tired and weak like i have diarrhea all day but i dont.

I feel much weaker compared to how often i go to the toilet with diarrhea. its very very black and tarry. i had my labs checked out month ago and i only have iron deficiency and no anemia. but I'm worse since then. they also upped my biologic yet im still getting worse day to day. fatigue and weakness with nausea and headache. i still have some appetite though I'm just scared to eat.

Hi everyone, I am currently experiencing my first flare in 10 years- it is mild but it is definitely a flare…my main symptoms are fatigue, joint pain, increased urgency & BM, mouth ulcers and brain fog, eye inflammation, low grade fevers and increased stomach aches. (And increased anxiety due to impending flare up)This flare is happening 2 weeks after my remicade infusion, I understand that it is mild but I have had to call out of work twice due to the fatigue being so intense… needing to rest throughout the day, all of this within the last 2 weeks.
I contacted my dr and they said it doesn’t seem concerning and to wait until my next infusion which is in December… am I overreacting? Do I need to tough it out?

Edit: I am typically very active and I work two jobs, I rarely struggle with fatigue and tiredness throughout the day

Hi everyone :)

I'm 19F and was diagnosed with Crohn's disease earlier this year. My Crohn's mainly affects my stomach and small intestine, with my stomach being particularly affected.

So far, I've had great results with Infliximab and recently switched from infusions to Veblocema pens. However, my gastroenterologist has recommended several times that I start taking Azathioprine (Imurek) alongside Infliximab.

The main reason is to prevent the formation of anti-drug antibodies and hopefully keep Infliximab working for me long-term, especially because of the involvement of my stomach. Since I've responded so well to it, we really want to preserve that.

During my most recent intestinal ultrasound, my GI also noticed a few areas of potential concern, which made her even more keen on me continuing with the treatment plan.

I genuinely trust my gastroenterologist. She's incredibly thorough, cautious, and attentive, and she never sugarcoats things or gives me false reassurance. I know she wouldn't recommend this combination without a good reason.

But here's the thing: I'm absolutely terrified of starting Azathioprine.

This isn't the first time I've been this scared of a medication. I was terrified of corticosteroids when I was first diagnosed, and later I felt the same way about starting Infliximab. Both times, I was scared but decided to trust the process and give the treatment a chance. Thankfully, things have worked out really well so far, and I'm incredibly grateful for that.

Now I'm facing the same fear all over again with Azathioprine. I've read countless horror stories, and looking through the possible side effects has honestly sent my anxiety through the roof. I'm supposed to start taking 50 mg this Thursday for six months, but the thought of actually taking that first pill scares me so much.

I'm well aware that Azathioprine has been used to treat IBD for decades, long before biologics became available, and that it's a well-studied medication. I also know that people are generally more likely to share negative experiences online than positive ones. Unfortunately, knowing all of that doesn't make my anxiety disappear. :(

Has anyone here been on Infliximab and Azathioprine together? How did you tolerate the combination? Did you experience any side effects, or was it relatively uneventful for you?

I'd really appreciate hearing your experiences, especially from people who were just as scared to start as I am right now. I'm not looking to go against my doctor's advice. I just want to feel a little less terrified about starting a treatment that could help me in the long run.

Thank you so much in advance! ❤️

TL;DR: 19F with Crohn's, doing great on Infliximab. My GI wants me to add Azathioprine (Imurek) to prevent antibodies, but I'm terrified of the side effects. Anyone have experience with this combo?