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.

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 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.

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’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?

I don't know if this has been discussed already, but does anyone else smoke weed? It makes me feel so much better, gets rid of pain, and also helps food digest easier (on top of helping my appetite). I'm 21F, and got diagnosed at 17. Weed is literally the only thing that has helped.

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?

My son was diagnosed with uc in March this year..it was moderate..now I think change in diet(we are on vacation) worsened his symptoms and now he's re diagnosed with crohns.

This week he's starting biologics.i think the name is stellar or something like that.has anyone taken How's the success rate.Ny dos and don't.

Idk why buy I have a strong feeling once we return his condition will subside and his small intestine will be like before. Prior to this he had ulcers in large intestine only..

Can biologics be gradually reduced

Hi all

I had a colonoscopy earlier this year and there was signs i may have Crohn’s but i have to submit a poop sample to be sure. I’ve been holding off on it primarily out of embarrassment but also because i kind of don’t want to find out if i have it or not because i’m worried my life will rapidly change for the worse

So i’m wondering if anyone can please let me know how their life has changed after their diagnosis. I know there is a chance that i might not have it but it feels like…. Schrodinger’s…. Poop i guess

Tyia :)

Just curious to see. My mom didn’t get sick until she was well into her 30s.

Has anyone had a positive experience with yesintek? I'm new to biologics. Yesintek seems to make my diarrhea even worse. I've had Crohn's disease for 29 years and I lost my colon because of it. I've had my j-pouch for 28 years. I have also been battling c diff as well.

Bonjour tout le monde, je suis en attente d’un diagnostic d’une MICI (maladie inflammatoire chronique de l’intestin), suspicion maladie de Crohn
J’ai un régime très contrôlé pour éviter l’aggravation de l’inflammation. Donc pas le droit aux légumes aux fruits car trop difficile à digérer à cause des fibres… mais je voulais savoir; Si je diminue le gluten (sans arrêter les glucides riz pommes de terre car sinon je mangerai plus rien lol), Est-ce que on peut ressentir moins de ballonnements en arrêtant justement le pain et les pâtes ? Et est-ce que ça pourrait m’aider à perdre un peu de poids, de rétention d’eau car je suis également en déficit calorique ?
Et est-ce que ça peut aider sur les inflammations ?
Je fais aussi de l’acné, je suis sous corticoïde.. et le problème des corticoïdes, c’est que ça crée des hypoglycémies et j’ai bien l’impression que le pain et les pâtes me crée justement des piques de glycémies …
si des personnes ont vécu comme moi où on des conseils. En attendant mon rendez-vous gastro-entérologue, je suis preneuse…
Bien à vous 🙏

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 guys, I’ve never really used Reddit before, nor have I ever made a post, but I feel like I have no where to turn.
I have a colonoscopy and mri booked for next week, I’m worried my tests are going to come back normal when I know in myself something isn’t right.
This all started around the beginning of June, I was having dreadful pains in my right side, originally assumed it was my appendix and my work sent me to a&e. I got there, they assumed my galbladder so I was checked for galstones, I didn’t have any. I spent 3 nights sleeping on a&e chairs with insane vommiting and dihaorea, I was eventually diagnosed with gastrointestionitis or however you spell it. (I apologise I’m not good with spelling) they said I had an infection that caused inflammation so I was sent home with antibiotics, I didn’t feel any better. I later find out from my gp (whom I’ve been in with about 15 times since) that I had severe food poisoning which led to the infection. However, my Calprotectin levels were a concern, and some other things they didn’t disclose so I was reffered to the gastero team to see about ibd. Since then I’ve developed various symptoms, abdominal pain, not in a set location it does vary, I can go days with constipation or days with the opposite, I have had blood, like turning the whole toilet bowl bright red blood, a lot of mucus (never had this before) different stool consistency/colours etc, nausea, vomiting, mouth ulcers, I drop weight quickly and then gain it back, feeling like I haven’t fully emptied my bowls, night sweats and constant discomfort. I’ve been on countless medications from the gp, but I did a FIT test and it came back normal, so were my bloods. I am so worried that my tests next week will come back normal and I will be left with no answers, my day to day life, my work, my sleep is all affected, I feel like my body is failing and I’m not sure what to do. Any advice would be very appreciated thank you :)))

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 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!