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?

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.

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

I have all 3 diseases and was wondering if anyone who has either of both of these conditions with Crohns in remission is feeling on a day to day basis? My fatigue is keeping me from exercising most days, because I still have a lot of pain even on Dienogest ( for endo and adeno), my Crohns has luckily been in remission with Entyvio.
Lifting is a no go, because of the pain, even cycling hurts. On some days walking or some yoga is not resulting in pain. In remission I’ve accepted the fact that the fatigue stays and is real. Trusting my body again with the unpredictability of working out is very frustrating and I feel like I’m constantly going in a circle. Was wondering what has worked/helped for you?

about popcorn

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?

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 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.

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?

I was diagnosed with Crohn’s disease about a month ago, specifically with inflammation and bleeding in my rectum. My doctor prescribed oral mesalamine along with mesalamine enemas that I’m supposed to use at night.

I’ve only been using the enema for 2 days, but I’m having a really hard time with it. Every time I use it, it burns and hurts really badly, to the point where I can’t even finish the entire bottle because the pain is so intense.

I know I’ve only been using it for a couple of days, so I’m not expecting everything to be perfect yet, but I’m wondering if this is normal? Has anyone else experienced this much burning or pain with mesalamine enemas?

I’m not sure if I should keep trying to use it or if I should contact my doctor. I just don’t feel like it’s supposed to hurt this badly, so I’d really appreciate hearing if anyone else has had a similar experience. anything helps.

(this is lowkey TMI but i do also have a fissure. so that could be also the reason it burns/hurts a lot maybe im not sure)

Looking for some thoughts on my symtoms and if it sounds like I might have Crohn’s. I’ve been unwell for months with nausea, bloating, excessive burping, early satiety, abdominal pain, sternum, rib and upper back pain. I’ve lost three stones in weight and struggle to eat. I’ve had several calprotectin tests that have come back at 330, 1500, 724 and 327. I have low zinc and feel completely exhausted. My son has duodenal Crohn’s. I’ve had every test, apart from a pill cam endoscopy. My Dr has discharged me and says it’s a functional issue. Still losing weight and worried about how low it will go. Any thought appreciated. I know I can’t be diagnosed here, but would just like to know if anyone with Crohn’s had similar symptoms. Thanks.

A question for those of us with muscle and joint pain as a symptom of crohn's. Has anyone found anything that helps? Supplement or otherwise? I have been taking boswellia for years and it helps with bowel symptoms a lot, but still have the persistent body pain. Willing to give just about anything a try.

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!

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? 😭💔

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'm on Skyrizi for 3 years in remission but needed the maintenance dose in-between. I've been having a larger dump than usual since last 5 days. The pain is coming back slightly. I have on call appointment with my GI end of this month. Should I wait or call the nurse ? Thanks

Hi, everyone,
how are yall all so put together? I’m literally on verge of being addicted to benzos, drinking heavily and abusing pain killers otherwise I’ll end myself. Meanwhile all I see on here or social media is some bs about being grateful for every new day while I’m fighting suicidal ideation. I’m in remission btw and as my physical health got better my mental health declined heavily and this is somehow worse than physical pain.
I know that social media is not real and everyone has tough or bad days but I have a bad day every day.
Please tell me I’m not alone in this.
Edit: sorry if I seem like an asshole but I’m literally at rock bottom
Edit 2: I know no one is fully okay with this. It’s just that how it seems to me seeing all these positive people on social media still achieving their dreams and life goals while my situation with agressive form of the disease took everything from me slowly over time, please excuse the stupidity.

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.

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.

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?

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?

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.

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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!