I had my yearly bloodwork, and my TB Gols came back positive. No signs or symptoms, feel fine. I am a RN, but I've had no known exposures and in fact, because I'm on Stelara, other nurses take care of the patients with things like rule out TB, Covid pts. I know the next step is chest xray, another blood draw, but just wondering what anyone's experience has been. Thank you in advance for your responses!

I just recently had my second infusion about a week ago and also in a bad flare ended up in hospital for 3 days. I’ve only been having 1 maybe 2 bowel movements a day, I’m just not use to that. So if this normal after the 2nd infusion?

As above, I wanna know from your experience if I likey have crohns. I've had stomach issues for probably about a decade. I'm 22. I had my appendix removed in 2016 and my gallbladder removed in 2023. And many other surgeries but not on the abdomen. For a while when I was working construction I'd have bloody diarrhea and sometimes black stools. Went to a doctor who tested me for H. Pylori and we got rid of it and my acid issues improved but I still have daily diarrhea and occasional blood and dark stool. I went back to the doc and gave him my notes on my stools and he suspects either crohns or ulcerative colitis and gave me a referral to gastroenterology. I haven't made the appt honestly out of lack of motivation. I'm working as a dog groomer now amd have had to call in twice in the past 2 weeks due to really bad sharp cramps and running on the back end. I usually cramp daily but some days it so bad I just want to curl up and sleep forever. Ive had back pain, hip pain, and hand pain (joints) since I was 15 and they all seem to get worse when I "flare up". I have always been kinda 'sickly' according to my family. From brain surgery to a growth in my scrotum. I've had countless surgeries and kinda don't want to have any procedures done anymore so I've yet to schedule an appt because I know they will want to do a colonoscopy. Some day i seem to be "out of it" and can't focus right. I've been taking dicyclomine (bentyl) when I'm hurting bad and it seem to ease the sharp cramps, and I know it can cause impairment; however yesterday I did not take any and stilk lost focus while driving and almost got in an accident. Does this sound like it could be crohns? I just wanna feel normal and be able to do thing like everyone else can. I love being athletic and used to train 6 days a week and no I don't feel well enough to even start working out again. Does this sound like anything you've experienced? I feel ashamed for not being able to do things that I should. My father always tells my I'm in my youth and should feel invisible but I feel like in torn apart on the inside and dying a slow painful death. Can someone tell me if life got better after knowing what's wrong with you? I'm afraid to go under the knife amd fear that my large intestine is damaged from whatever i have. I've had 3 brain surgeries when I was twelve and the other surgeries I mentioned above.

Hi all,

I have a colonoscopy on Tuesday at 14:50. I've been given two moviprep sachets and some generic instructions. The leaflet says I should drink 1L at 17:00 and 1L at 21:00. That's it. However, after doing some googling, it says you should follow a 19:00/06:00 plan if your appointment is in the afternoon. Does it matter? I'd usually follow the instructions sent to me, but it looks like a generic leaflet they give to everyone, so I don't think it's factoring in the time of the appointment.

I'm just looking for some advice from people who have gone through this before 😊

Thanks

Hi everyone hope you're all staying well.

I've been on Entyvio for 7 weeks and since day 2 I've had an awful ear infection (never had one before) that just wont go away. I've been dizzy/vomiting every day since i started this medication because of my ear and it's really starting to bother me now. I've also had sinus/throat infection with this medication, and to me it seems Ear, Nose and Throat are connected...

My doctors say it has nothing to do with the medication, but after 7 weeks and 3 different antibiotics, it keeps coming right back. They also say the medication is gut-specific, not systemic and shouldn't impair my bodies ability to fight the infection off. They just aren't listening to me, this is the last medication available for me that I haven't had a serious reaction to and I'm getting concerned. I can't live my whole life being dizzy from a perpetual ear infection. The next option after this is surgery and wait for a new medication to come to market...

Has anyone here had ear infections with Entyvio? If so how'd you get them under control?

Any info at all will help, thanks

I've been in a relationship with my bf for four years and I've always had problems with IBS. about five months ago, my symptoms got so much worse and I got diagnosed with crohn's and leaky gut. my bf definitely recognizes my struggles because he sees how much pain I'm in. I already tried improving my diet, but my symptoms are still so bad. my bf thinks I can reverse crohn's by eating the right diet and he won't shut up about it. im still struggling to accept that I have this stupid disease and I can't listen to this all the time. sure, I can be in remission and not have any symptoms, but ill never reverse it. I can't really reduce stress rn since im in college and also have a job and I think I could still do a better job managing my diet. but I can't do it right now. mentally. I know he just wants the best for me but it's so exhausting hearing him say that I can reverse crohns all the time. I decided to take entyvio infusions for now because I feel like I can't get this under control right now just by eating clean, which he's not happy about. just a vent.

Been here for a few months just want to thank everyone in this community. It’s been immensely helpful through the diagnosis process.

I was diagnosed late September. Elevated CRP, a Calprotectin <1500, confirmed by colonoscopy and MRI.

Currently on Budesonide, and have my first Skyrizi infusion tomorrow!

So far my symptoms have been mostly manageable but I feel like they change EVERY single day. Is that normal? Digestive symptoms I know are more affected by what I eat, but all the other symptoms too?

For example: I’ll have join pain in my right hand, but then the next day it’s fine, and a few days later it hurts again.

Another: About a month ago my ankle was so sore both joint and tendon I couldn’t walk on it, went away after a week, and now it’s back again out of the blue!

Canker sores and (what I think are) erythema nodsum coming and going as well.

The digestive symptoms have improved with budesonide (less/no blood), more appetite, but the other symptoms still persist in this revolving door of changing every 1-2 days.

I hope this makes sense… This the case for anyone else?

Hey I’m pretty newly diagnosed and I’m a youngin but old enough to be here. I’m puking a lot and this is only when I have flare ups. I vomit and poop at the same time. After this goes by I take my meds take a nap and continue my day as normal. My mother suggests I go to the er again but I feel like they are going to tell me the same things. I’m also trying to head back to school soon as my treatment is on the 4th and I haven’t been there for a while. Do you think I should push through?

Please help.

I've just had blood in my stool again after being symptom/flare free for a good few months... this is and has always been the first major sign i'm in/about to be in a flare. I thought i was in the clear finally but i guess not!

Funnily enough it was this time last year that symptoms came back after going away for a bit, and now its happening again, what are the chances of that! 3rd Christmas ruined :(

I'm probably going to have to switch biologics as i'm already on a frequent dose - i'm having infusions of inflixumab once a month instead of every 4-6 months. I never fully trusted this med would work either (after about 3 or 4 failed attempts of other meds.) If they put my on steroids temporarily again i will cry, I hate them lol. And if i have to do another colonoscopy (would be my 5th one) i'm going to throw a tantrum to lmao.

I got diagnosed in Nov 2022 a few months after turning 17 and have been dealing with it ever since. I'm now 19 and restarting my 1st year of Uni, as crohns was the reason i had to defer last year and start again this year so it better not fucking happen again!

happy crohns and colitis awareness week. Make sure to remind your family members so they know how hard you work to just survive every day. I hope y’all know that you were some of the strongest individuals and you deserve this week. Treat yourself and say fuck crohns 💋💋

Hi everybody (23F). March 2024 I had a bowel perforation that resulted in emergency surgery and a large portion of my small intestines taken out. I had the symptoms of severe pain, vomiting, and fever the day it happened. The one thing my surgeon kept saying was “how could you not feel anything before today”. Now whenever I have stomach pain or abdominal discomfort I am always thinking worst case scenario. I call my GI doctor when this happens and he assesses the symptoms I am having and has me come in. For the past 15 hours I have had abdominal pain (cramping and feels like pulled muscle) but no fever and vomiting. Otherwise I feel perfectly fine, just my abdomen constantly bothering me. I took Tylenol, gas x, and tums. One thing to note is my GI doctor is very confident that I do not have active crohns right now and I very much trust his judgement. How likely would it be that I have another perforation? I have not eaten much and over the holidays I did drink alcohol more than usual. I am not sure if my cramping is from the lack of food and alcohol intake.

To everyone who has had an abscess reoccur before, when did you decide to go to the hospital again? This year I was admitted to the hospital 4 times to treat a reccurring intra-abdominal abscess that was caused by an antibiotic resistant bacteria. After this last hospitalization, I was put on IV meropenem for a month or so, and I have felt better than I have in months, but today I have been having eerily similar pain in my lower left quadrant and I have a negligible fever (99.2). I had my first remicade infusion about 2 weeks ago, and I am also receiving tpn through a PICC line right now. I have labs being drawn on Monday, but I can't decide if I should go to the ER now, or wait until after the results of the labs.

I'm worried because previously lab work hadn't been a strong indicator in my case of how severe the infection was. Only CT scans have been able to show the extent of the infection and inflammation. I guess I'm not sure when to be worried? Any advice would be great, thank you in advance!

Hi all, looking for recommendations of good hernia belts you’ve tried out and liked. I need to start doing resistance training but have been asked by my surgeon to wear a belt. I’m seeing lots of products on Amazon with low ratings so looking for recommendations. Thank you! 🙏🏼

Thanks to some wicked budesonide fueled insomnia and anxiousness, my kitchen and living room are now sparklingly clean. I got right in there too, the disgusting fur/dust/filth/WTF on the tops of the cabinets, the dust behind the TV, and I actually moved the furniture to mop and vacuum under them instead of just doing the outlines.

Budesonide Ric Flair ON WOOOOOOO! Ric Flair OFF

For example, my Crohn's flairs have me on a pain of 9/10 for hours on end. Would an urgent care be able to give strong painkillers and steroids through an IV? I know the wait at Urgent Care would suck, but it would be much cheaper than a $1,000 ER bill.

Hey everyone, I'm starting prednisone for the first time. I'm going to be taking 20mg daily for a month, since the other steroids I've been on haven't helped me a lot. I've heard a lot of bad things regarding the side effects of prednisone. My GI told me that a short course doesn't pose a serious risk. Is this true? Has anyone had long term complications from a course like this? I think I might be too anxious over this but I'd like some reassurance.

After I get my entyvio infusions, sometimes I will have colon pain and fever for a couple days. It’s usually not severe, and there won’t be any signs of inflammation like blood or diarrhea. It will go away and I’ll go back to “normal”. But this time it’s pretty painful and it feels like a flair. It’s strange because I do so well on the medication. It’s worrisome because this time really hurts. Reminds me of how I felt before treatment.

Does this happen to a lot of people?

Make sure you get the good stuff in bulk. Theres discounts that way.

After a recent flare that sent me to the hospital with an obstruction, I had to get an mri. Dr saw a lipoma in my stomach on the mri scans. Dr wants me to get an ultrasound and speak with a surgeon for removal and biopsy. Anyone else with Crohns ever have this? I’m on Remicade and have never gotten surgery before. Nervous 🥹🥵. My symptoms have also been getting worse recently so I wonder if it is related to this lipoma thing. I’m 24 and got diagnosed 2 years ago. Have been on remicade for 1.5 years.

Hi,

What items are helpful to you during a flare?

Heating pads and zofran are obviously my holy grails but what other things do you guys use to make you more comfortable?

I’ve tried different types of ginger chews and tummy drops, headache caps, weed, and massage devices but none of these have really helped at all.

Any suggestions for when you’re in pain would be great.

Hello everyone,

I’m reaching out to gather insights and advice regarding my child’s recent health challenges. We’re navigating a potential early Crohn’s diagnosis and want to ensure we’ve explored all possibilities before committing to significant life long treatments. Here’s a detailed background:

Symptoms and Timeline:

• Main symptom: Sharp tummy pains (lasting less than a minute, on and off) with occasional foul-smelling gas.
• No diarrhea or visible blood in stool at any point. Stools have been normal overall.
• Other symptoms:
  • Occasional low-grade fevers (treated with ibuprofen a few times).
  • Past nasal congestion (resolved with nasal sprays).
  • Occasional night sweats.
• Other findings: Some weight loss and iron deficiency were noted during evaluations.

Tests and Findings:

Colonoscopy Findings:

• Terminal ileum: Congested, eroded, friable mucosa with ulcers.
• Ascending colon & cecum: Severe congestion, erythema, friability, and ulcers.
• Rectosigmoid, transverse, and descending colon: Moderate erosion, friability, and ulceration.

Biopsy Results:

• Acute colitis with crypt abscesses and ulceration in the ascending colon.
• Focal acute colitis in the descending colon.
• No granulomas or signs of chronicity in biopsies.
• No viral cytopathic changes or CMV.

Stool and Blood Tests:

• No diarrhea; blood work showed elevated inflammation markers (ESR/CRP).
• Stool tests: Elevated fecal calprotectin (3000+), no pathogens detected.

Current Treatment:

• Prednisolone liquid (tapering): Tummy pain significantly reduced, stools are normal, and symptoms have improved overall.

Questions We’re Struggling With:

• Does this sound like a clear case of IBD (Crohn’s or UC), or could the inflammation be caused by something else (e.g., infection, NSAID use, bacterial overgrowth)?
• Should we consider additional testing before starting treatments like biologics? For example, is SIBO or an infection still a possibility?
• Our child is very nervous about medicines, injections, and hospitals. How have others helped their kids feel more comfortable and positive about starting treatments like biologics?
• If you’ve been in a similar situation, is there anything you wish you’d done differently during the diagnosis or treatment decision stage?

We’re working closely with our GI team but want to ensure we’re asking the right questions and advocating for the best path forward for our child since we are first time dealing with this. We would be incredibly grateful for any advice, experiences, or perspectives you could share.

Thank you so much for taking the time to read and respond—it means a lot to us!

tagging as nsfw just in case this reaches the tmi zone, but idk how to explain 😭 i feel like ive pooped a lot today, and now my butthole and cheeks just feel really heavy. it almost feels like they’re constantly contracted or something, like as if im flexing a muscle except im not. i would assume im not alone in this but it’s happened a few times to me before and it’s just very uncomfortable. it’s just like a big ache or cramp

I had a infliximab infusion the day before Thanksgiving, normally my side effects don't last more than 1-2 days but not this time. I don't know if it's the start of a flare up or still side effects from the infusion. It sucks because I've tried my hardest for the last year just trying to enjoy my birthday "had a flare up the last 2-3 birthdays" and I woke up threw up and have been having pain all day.

Hi all,

I am still relatively new to Crohn’s disease (diagnosed in February after having severe iron deficiency anemia) and have been on mesalamine since. Everything has been going fine but for the past week or two I’ve been having a muscle soreness like pain on the lower right side of my abdomen that is constantly there. When I move the pain is pretty intense and it feels like I have a pulled muscle or something. I didn’t experience a lot of pain prior to diagnosis so not sure if this is how the pain feels like but I am assuming it’s a Crohn’s pain.

I’m in a period of high stress (yay law school finals) so not sure if I should reach out to my doctor or just try to live with it for the time being and hope it gets better after I’m done with finals. I’m getting a colonoscopy sometime in January so I don’t know if this warrants a message to my doctor or if I should just wait. I also was supposed to do a fecal calprotectin test in October and just haven’t so I feel like I should not reach out.

Does anyone know what this indicates? I ate two pieces of pork and am now suffering a headache I've never felt before. It's like a band over the top of my head ending at my temples. It's coming and going depending on how I'm positioned in bed. I'm sipping water and taking tylenol. Any suggestions for me to ease my symptoms?

I stopped drinking for a few months while trying to get my Crohn’s and endo symptoms under control. I started on azathioprine and budesonide 3 months ago. Lately my symptoms have been pretty good and I’ve experimented with eating different foods that usually flare me and haven’t really had any symptoms (yay!).

So as it’s coming into the silly season, I thought I’d let go and try some over the weekend at social events. I had 3 wines at my work Christmas party, then 2 seltzers at a friends house the next day. I then woke up at 4am in excruciating pain, multiple trips to the bathroom, I’m still going.

Booo! I don’t love drinking anyway, but I want the option to have a few when I feel like it! What’s your experience with Crohn’s and alcohol?

I cant have chocolate or milk in general anymore, I’m literally cryinnnggg

I have been feeling worse and worse since having my illeostomy reversed one year ago. I'm now at the point of throwing up almost instantly after eating. Does anyone have any advice? I'm hoping I don't need to get an ostomy again

I’m have a Subtotal colectomy and my terminal ileum removed. If it all goes well there should be around 30cm of colon left to reattach the small intestine to.

I’m trying to decide whether to have the Ileocolonic anastomosis, reconnecting what’s left back together or just live the stoma.

I’m not keen on the stoma but I’m also not keen on popping myself and having to run to the toilet 10 times a day.

Will 30cm of colon left help in an anyway?

I am active and want to travel but also not keen on having a bag.

Could people share there experience?