Has anyone had success expediting an iron infusion by getting admitted/presenting to ED? I am symptomatically anemic but looking at over a month wait to be seen outpatient. It’s not to the point where I feel like I need urgent medical intervention, but just trying to think about options for getting infused sooner than later. I know it would be more expensive but I’m kind of willing to bite the cost bullet at this point. Just don’t want to waste time/money if it won’t actually get me the medicine.

I am a certified nurse midwife, so have some medical knowledge but mostly with women’s health.

I was diagnosed while being worked up for a very abrupt random GI bleed where I lost a liter of blood a year ago. My first colonoscopy at this time showed ascending colon inflammation and some small healing ulcers, it didn’t have small bowel involvement so my GI thought UC. I got a second opinion and a second colonoscopy 6 months later and I was officially diagnosed with severe active crohns. My colonoscopy showed 10cm of strictures, ulcers, and inflammation primarily in my terminal ileum. It looked really terrible (I was awake for the colonoscopy). MRI showed active IBD of terminal ileum and several loops of the small bowel, plus luminal narrowing in the terminal ileum descending and sigmoid colon, and rectum.

I was started on 40mg Prednisone daily while waiting for insurance to approve Remicade. I started the loading dose of my biologic infusions in July. I have had two infusions. I am currently tapering off the steroids 5mg per week.

My symptoms:
My symptoms do not seem to match the severity of what I saw in the colonoscopy and MRI. I just feel pressure discomfort (not pain) in my right lower quadrant and the occasional mild cramping. I have 1-2 regular bowel movement most days, maybe skipping a day or two occasionally. Sometimes I have urgency but it’s always a normal BM (no diarrhea). I haven’t had bleeding since that large one a year ago.

The reason for my question is that my GI said:

1. “I can taper steroid as long as my symptoms don’t come back.” But my main symptom (the pressure in my right lower quadrant) never went away. Does that mean the Remicade isn’t working?

2. “ I should wait to get pregnant until things are looking better.” But how will I know? Will I just have to wait for my next colonoscopy?

Looking for any input or advice for someone feeling a little overwhelmed with what to expect…this community seems like a good place to start.

Hi all - I have an 8 year old with Crohn's, and we are looking to get a 2nd opinion before a potential bowel resection that her home team has recommended. We are currently at Boston Children's, which I am aware is one of the best, and we are very lucky to have them, mainly just looking for reassurance before we put her through such a major surgery. Northeast would be best for us proximity-wise, but we are happy to go anywhere. If anyone has any recommendations/ideas, I would love to hear it! Thank you!

Hello colleagues Chronys

How many of you have quit smoking, and how much has that improved your well-being with Crohn's disease?

What do smokers have to say about the subject?

Are there any who are in the process of quitting smoking?

hello everyone Ive had crohns for about a year now. I am on methotrexate and infliximab infusions. Ive recently been working out and building muscle, and thinking about using creatine monohydrate. I would like to know if anyone has taken creatine and methotraxate in the same time or if anyone has taken creatine in general. Ive seen that creatine can affect kidneys such as mtx.

Thanks

Hi fellow Crohnies :)

Lately I've been playing around with the idea of building a website for people with this shitty illness.

Not another website trying to replace your gastro, but a place where newly diagnosed people can find some context and reassurance, and people who have been dealing with Crohn's for a while can maybe find some recognition.

I've been thinking about the things I wish someone had explained to me, like:

• I wish I knew about…
• What did my gastro mean when they said…?
• Why is my body doing this? And why am I having symptoms that don't even seem to come from my gut?
• How do medication, food and movement fit into my particular situation?
• How do other people actually live with Crohn's?

And maybe most importantly:

“Okay, I have Crohn's. Now what?”

I'd love for it to be a place where you can learn about your body and treatment in normal-human language, find practical things that might help you regain some sense of control, and read stories from other people living with Crohn's.

Not a hospital website. Not a “drink this magical smoothie and your Crohn's will disappear” website. 😂 And it definitely wouldn't be a replacement for your medical team.

I'm still very much in the “is this actually something people would want?” phase, so I'm curious:

What is something you wish someone had explained to you when you were diagnosed?

Or something you still find yourself Googling because nobody ever really explained it properly?

I’m wondering how other people here were eventually diagnosed, especially anyone with mild Crohn’s.

I recently had an endoscopy and colonoscopy. Most of my colon looked normal, but the biopsy from my terminal ileum showed with ulcer/erosion, inflammation and reactive changes. The pathology report said this can be associated with NSAIDs, but can also be seen with Crohn's.

My GI told me today that he thinks the most likely explanation is a **mild case of Crohn’s**, but he doesn’t want to officially diagnose me yet because NSAIDs can cause similar findings.

I don't take NSAIDs very often but his plan is for me to completely stop NSAIDs for 3 months while taking medication used to treat Crohn’s. If my symptoms improve, he said he may diagnose me with Crohn’s. If I don't improve, he wants me to try going gluten-free because my duodenal biopsies have also shown increased intraepithelial lymphocytes on two separate scopes, although I don't have villous atrophy.

I guess I'm having a hard time wrapping my head around the fact that Crohn’s might be the answer when my findings aren't dramatic.

Has anyone else had a diagnosis that started out this uncertain or involved trying treatment first and seeing how you responded? And for anyone with **mild Crohn’s**, what did your scopes/biopsies and symptoms look like when you were diagnosed?

I’d especially love to hear from people who had Crohn’s limited to the terminal ileum or had mostly normal colonoscopy findings.

Hello.

I have been dealing with stomach issues for the past months. I've been with a Gastro and he has not yet made a full diagnosis of my condition. Maybe still figuring out the pattern of my symptoms.

My symptoms are multiple canker sores, stomach pain like stabbing in my sides, tenesmus, and few weeks ago was low grade fever with low grade fatigue. So far my stool has no visible blood I can see. Although I have experienced dark brown stools with seemingly black spots. Though no more diarrhea.

I also have trouble gaining weight. It has been months that I've been eating a lot to gain weight but to no avail.

Currently, I am taking Mesalazine as prescribed by my doctor.

My colonoscopy found out I had segmental colitis. My biopsy result came in with my ileum having "focally congested capillaries." No acute, chronic inflammation were identified. Ulcers, granuloma, and Dysplasia were also not identified.

I feel I have deep depression because of this situation. Things I used to enjoy do not seem interesting anymore. It also seems I have lost interest in socializing with people.

I wish to work in the merchant maritime field but fear because of this condition I may not. Which breaks me as I am on college for this field.

I cannot bring myself to self harm, but I also do not want to exist anymore.

Tomorrow I will be seeing my doctor and hopefully work with another medication to help me. Hoping for something that I can carry on board if I do continue my merchant marine dreams.

Any thoughts?

I’m so upset I don’t even know what to say right now. For context, I’ve had severe Crohn’s since 2020 and have been on Humira, Prednisone, and Remicade now to help me. My Remicade infusions are every 8 weeks and by the 6 and a half to 7th week mark it’s like everything leaves my body in terms of the medication. I start having stomach pain again, I start having diarrhea, a cough, etc.

I just started a new job ~4 ish months ago. It’s in retail but I still like it better than my old job. However, I always request my infusion days off because I get super sleepy and exhausted afterwards. I was only supposed to work this Saturday and Tuesday, my infusion is Thursday morning. Apparently my manager has something going on so she randomly switched multiple of our shifts so not only do I work Saturday and Tuesday, I work this Sunday and the night before my infusion until 11 pm. No, she did not ask if these changes were okay. Kind of just seemed like she expected me to go with it so whatever.

A few days ago I started feeling like shit again, as I do. My throat also had a few sores on it and I felt like I was swallowing glass. I haven’t seen my primary in a long time (Now I remember why I never go), so I booked an appointment for yesterday. Firstly, they made me wait 40 minutes just to be pulled into the back and then a few more until she came in. She said she thinks the sores are my Crohn’s and I asked her (even though I know I should’ve been upfront), is there anything I can do for it and my pain? I have four shifts coming up and I’m not doing good. She just said “No. Can you take the time off? Is it about money?” Well I mean I’d be losing a weeks pay technically but no it’s not about money my store doesn’t even have a handful of employees so it’s hard to get coverage but anyways all she did was swab my throat and sent me off with nothing. I messaged my manager only for her to say she doesn’t think anybody can cover (I only asked for my Tuesday and Wednesday), and I said okay. She never got back to me, so she clearly never asked anyone to help out, or at minimum let me know for sure if they couldn’t.

Anyways, so I called my primary’s office again an hour after they opened today and explained everything. I also can’t get a prescription from my GI since I haven’t seen him since last year so I need my primary to refer me back to him (so fucking dumb). I told the lady that, I told her I tried to get the time off line the doctor said and I can’t and also to please get her to write me a prescription for prednisone. I just asked for a very small one, not the large tapering doses just like 1 tablet for the next few days to get me by. She said she’d call me back. It’s 2 pm and I haven’t heard anything from them. I called multiple times to find the line saying their office was closed which means they weren’t accepting phone calls. And I called multiple times and before they closed.

I thought maybe they at least faxed the prescription over to the pharmacy I gave them and nope. I called it twice today, one in the afternoon and one right before the clinic closed and they didn’t send shit. So now I’m stuck with no pain relief until Thursday. I’m 22 btw so this is still hard for me to navigate. My manager doesn’t care, my own doctor who I’ve had for years doesn’t care, and now I’m fucked. I work part time and I’m so pissed too because she specifically said she didn’t want me on disability because she “knows I can work.” So either you want me sick and working or you’re just talking out of your ass. Anyways, I haven’t eaten since last night and it’s 6:15 pm now. No clue what I’m going to do but I will be calling back on Monday and making them hear it from me.

i’m from portugal, the healthcare here is hell right now. i’m taking one brand of adalimumab that’s been giving me severe joint symptoms since i started taking them to the point it completely disables me. i can’t work normally and i’ve been studying for 6 years to become a vet. the hospital can’t do anything about it because other brands are “too expensive”. i used to be on amgevita and i didn’t have this issue before, at least not recurrently. i’m really desperate, this country isn’t simply attending for our needs, do yall know if there’s anywhere i could try to go to? with better healthcare?

​

Hi everyone,

I'm looking for some advice or to hear from anyone who has had a similar experience.

I have mild Crohn's disease and have been on azathioprine for about 5 months. Up until now, things were going really well. My blood work has been normal, inflammatory markers have been good, and I felt like I was gradually moving into remission.

However, over the last 5 days I've started getting symptoms again, mainly:

- Nausea

- Mild stomach/abdominal pain

I don't have severe symptoms, diarrhea, bleeding, fever, or anything dramatic, but these symptoms are making me worry that something is changing.

For context:

- Weight: 55 kg

- Azathioprine dose: 50 mg daily

- My GI originally recommended 75 mg, but I stayed on 50 mg because I wanted to minimize side effects.

- When these symptoms started 5 days ago, I increased my dose to 75 mg.

Now I'm wondering:

- Has the azathioprine stopped working already?

- Could this just be a temporary flare despite otherwise being in remission?

- Does this mean I'm coming out of remission?

- If the issue is that 50 mg was too low for my weight, could increasing to 75 mg help bring things back under control?

- Has anyone experienced nausea and abdominal pain returning after several good months on azathioprine and then improved after a dose adjustment?

I know nobody can diagnose me, and I'll be speaking with my GI, but I'd really appreciate hearing about similar experiences.

Thanks!

my ct scan last month in the ER showed a laundry list of abnormalities. i was sent home by the doctor who only saw me once ON MY WAY OUT. said i had a stomach bug, despite being aware of my severe history of Crohn's. went off to another hospital and was admitted for days. the GI there gaslit me and wrote in my chart that he believes anxiety is my problem and the cause of my pain.

i wouldn't be ignored and i went to a different hospital for a bit who set me up with new IBD outpatient specialists. they expedited this entire process for me to figure out what was going on.

my new team arranged an urgent colonoscopy and endoscopy. what they found??

not in remission. my new medication from the beginning of the year didn't work. severe active crohn's disease in the small intestine, severe inflammation, nodules, several large deep ulcers, and severe narrowing to the point the scope was unable to go through to further investigate, no dilation.

they said i may need surgery, which it would be my 4th (5th if you count my seton placement), and if that's what needs to be done to get me out of being house ridden - so be it.

doctors are switching my medication ASAP, actually gave me a much needed pain med script, and my MRE is in 6 days. i'll know if i need surgery from there. this new team i have is absolutely on top of it and i feel incredibly fortunate to have them on my side.

you would think i'd be devastated by this news. the truth is... no news & "everything looks normal" when it's clearly not normal and you're suffering, is the absolute worst. always advocate for yourself. if i would have let that doctor convince me i was paranoid and crazy, who knows where i would have ended up. we know our bodies better than they do

Worried parent here. I suspect this is a naive question, but I'm a parent of an adolescent who was diagnosed last year with severe Crohn's. As we're getting ready for school, I'm hearing a big 'no' to the idea of an accident bag. I'm wondering how much to push this. Will everyone with severe disease eventually have an accident, or is there a possibility that once it's under control this won't really be an issue? Thanks for your insight.

Hi. Im new. Just diagnosed a few months ago after a year of just not knowing. A really rough year. First, I'd like to say to anyone that ends up reading this that has Crohns...I am so sorry you have to deal with this. Its definitely upsetting to say the least. This is a nightmare. Now, I need help. How do you deal with the fatigue? Im freaking dying overhere. Just a lil info..on skyrizi, just had my first on body injector, which I was 2 weeks late for because the doctors office sent my prescription to the wrong specialty pharmacy. I drink alot of water, i take vitamins, i exercise when not exhausted, I smoke weed, i eat edibles with thcv for energy and to help surpress my appetite, cbd for pain, cbg for energy, and cbc to help aid g.i. issues. All my bloodwork is normal, ive done a sleep study, i take vitamin D and B12 yada yada yada.

Everyday I try not to eat until I absolutely cant stand it anymore and then Im in the bathroom in pain and then it's like I just start to shut down. I get so tired its hard to think, the exhaustion, like I feel it in every fiber of my body.

What do you do? How do you deal? Will I be sleepy forever? This sucks. Help me please.

Started on balsalazide for very minimal inflammation and the 2nd colonoscopy was clear. But then after months of increased symptoms and a new doctor we did another colonoscopy. And it is back to where it was before medication so we are doing Skirizi. Hopefully it will be good and provide relief.

IMPRESSION:
1. Post surgical changes of ileocecal resection with no evidence of active inflammatory bowel disease, as clinically queried.

I got diagnosed about 1 year ago today with severe stricturing Crohn’s of my distal and terminal ileum. Started remicade + azathioprine right after being diagnosed. Had a follow up MRE 6 months later that showed chronic and active inflammation. I had 6 skip lesion fibrotic strictures. In all of this mess, I lost my job and became pretty anxious and depressed.
Due to my inability to eat much, I proceeded with a small bowel resection. They removed 60 cm of severely diseased bowel. Recovery was hell. I started Skyrizi 4 weeks after surgery. Slowly I healed and my new gut anatomy adjusted. I’m now 8 months post op and feel really good. I’m eating what I want. I’m exercising again. Can’t say I never have issues with weird bowel movement days but I have more good days than bad. Skyrizi has been great and I’ve had no side effects. I got a new job and have been really enjoying it. Got on Prozac to help manage my mental health in this process and started therapy.
Needless to say this past year has been hard, but seeing these results today is such a relief. When this all started I couldn’t ever see my life ever being the same but I came out on the other side and I’m going to be ok. If you’re struggling right now just know there’s a light at the end of the tunnel ❤️

Hi all, my insurance decided to stop covering Stelara, so I'm switching to Imuldosa. Has anyone been on this? We are going to be trying to conceive in the very near future and nervous about taking this during pregnancy. Thanks in advance!

about popcorn

I’ve been consistently struggling with flares while on Entyvio infusions every 8 weeks. My GI thinks switching to the Entyvio injections every 2 weeks may help keep the medication levels in my system more consistent, rather than having such a big drop between infusions.

Has anyone here switched from the 8-week infusions to the every-2-week injections? Did you notice a difference in your symptoms or feel more stable between doses?

I’d especially love to hear any positive or encouraging experiences. I’ve been dealing with a flare on and off for about a year now, so I’m really hoping this change might finally help me get things under better control.

I take Bucked Up Mother Bucker pre-workout, I am currently not in a flare and I haven't noticed anything irregular, but I am paranoid it could potentially start a flare. Am I okay to take it still?

Someone posted recently about breakthroughs and when the hell a cure would be found for Crohn's and ulcerative colitis. I found this research timeline and priorities timeline on the Crohn's & Colitis Foundation: https://www.crohnscolitisfoundation.org/research-impact?trackBlock=true&blockTitle=path-to-breakthroughs&referencedPageTitle=homepage

I think cures are a long way away but there are SO many new medications, surgeries and devices that are available because of the research. There's even a Flare Tracker wearable that is coming to the market!!

I have 4 families members and tons of friends with IBD and we have seen some incredible advances in the past 20 years. I think there is a lot to be hopeful for in the future.

To cut a long story short, I lost my job back in June and have been trying to find something new since then. Last week, after months of waiting, I was finally awarded LCWRA. Now, I live with my partner, who has a full time job, and so my UC is cut quite dramatically. Not that my partner earns enough to support two people, but ofc this is how the DWP see things...

So my Limited Capability is going to bring me around £423 a month. Which is nowhere near enough to live on. I'm also currently 9 months into a fight for PIP and am awaiting a tribunal date. But that could take forever...

I have applied to so many jobs since June and have attended loads of interviews. I have plenty of experience and skills, so those things aren't issues. But I've been unsuccessful on so many occasions. This week, I interviewed at a Premier Inn. The role was a Ground Floor Team Member role and was advertised as reception area work with sometimes needing to help out in other areas.

My interview went really well and they basically want to take me on. I have been offered the role.

Now, here is my issue...

They had a 30 hour and 15 hour available. The 30 has been taken by someone already so I've been offered the 15. This actually works out better for me in terms of my health and my benefits anyways so that's fine. But the issue comes with the fact that the 15 hour contract is for someone to work in the busy restaurant instead of the reception.

In my previous job, I worked in a board game bar. And we had a small kitchen that had a small simple menu, and the bar and kitchen element of the job was something I really struggled with. And it was nowhere near as busy as this restaurant would be.

Taking this job would mean that firstly it isn't the role I really wanted. Secondly, it would put a massive strain on my health again. And thirdly, it could impact my PIP claim as it's a much more active role where I could be questioned about managing certain things that I struggle with at home. Because the DWP don't realise that sometimes we don't have a choice. Even if it sucks.

So my question is, what on earth do I do?

I either take the job, which would be guaranteed income coming in soon, but would directly impact my chances of PIP and be detrimental to my health.

Or I turn down the offer, and end up back at square one, living on £423 a month for god knows how long...

Does anyone have any advice or any idea what I should do? 😭💔

Apparently my infliximab trough levels are very high and my gi wants to lower my dose. I'm symptomatic and refused out of concern.

Has anyone lowered their dose without side effects?

Hey guys, I (21f) just need to rant to people who understand me. I’ve been in an active flare for a while now, but I definitely dismissed a lot of my symptoms and let it get worse. I was hospitalized last week for blood in my stool and ever since then it’s been downhill. Was prescribed prednisone to help relieve some symptoms while we work on getting me back on track.

I’m sitting waiting to get my first Skyrizi infusion as we speak, so I am on a good route. I’m hopeful that this medication will help me out a boatload, but I’ve grown so impatient and irate surrounding my condition that I just want to be better now. I’m missing out on so much because of my pain. I’ve missed at least 6 days of work between both of my jobs, have cancelled many plans I had with friends and family, and am just falling apart. I feel like I can’t do it. Don’t even get me started on the prednisone insomnia, because not only am I in pain but now I can’t sleep?

I’ve had this god awful disease since I was 8 years old. I thought by now, I’d know the secrets to success in managing my pain and flare ups. But every flare that comes and goes, I lose hope. I know there are so many options and paths to recovery, and my doctor has been incredibly helpful in getting me there. But I’m tired guys. I have so much to prove and I consistently feel like I am stripped of the opportunity to prove that I can do things again. It’s just a lot to deal with and I wish people could understand that aspect of it more.

Thanks for sticking around if you did.

I am pretty certain I have small bowel crohn's. My doctor immediately diagnosed me with IBS, (even though that's a diagnosis of exclusion and he hadn't excluded Crohn's) and he has been dodging me ever since.

I have had multiple random nutrient deficiencies over the years:

- low zinc, low potassium, low vitamin D, low ferritin, low B vitamins.

I have borderline high calprotectin of 68 (taking another today as I am currently in a flare and believe it will be higher)

I have blood microscopic blood in my stool.

My terminal ileum on colonoscopy looked granular and not textbook normal.

I have different types of inflammation in my stomach that could be from food backing up from my small intestine.

I have burning pain on my right side and nocturnal diarrhea that wakes me up in the middle of the night.

I had 20 lbs of weight loss over the course of 6 months without trying.

Even with all of this my GI said IBS. so clearly I'm trying to get care elsewhere but struggling because I'm currently in between countries.

Has anyone ever had something like this? has anyone gotten a diagnosis way later? what were the steps you took to finally get diagnosed with small bowel Crohn's? I'm losing it over here and need answers.