Looks like almost everyone can’t eat certain foods. I just wanted to see if there’s people out there who eat the exact sam they always have. I’ve tested some diets and watched how my bod reacted and seen no difference throughout my experience although I’m fairly new to this. The only thing I can’t eat is food I’m allergic too which usually cause my flares.
It kind of feels like a rite of passage even, but not in a good way unfortunately. April 13th, I got admitted in the evening for worsening symptoms, because adalimumab wasn’t working for me. They gave me IV prednison to combat the inflammation and did a repeat scope which shows my entire large intestine was inflamed where previously it was just proctitis. They started me on Vedolizumab on the Friday and I could go home after, but symptoms worsened again at home. Now I’m back for IV steroids to hopefully give that last push for the inflammation to subside, but if it doesn’t work, they’re contemplating starting JAK inhibitors or even surgery to remove the colon… I’m not feeling very hopeful, anyone in a similar situation?
Hello I’m 26M, my story begins when I was 19 I was diagnosed with crohns then colitis at 23 and in the same year back to crohns finally at 26 I got my final diagnosis to be colitis. During this time I was switched on many different medications that never seemed to work and been in a flare for the last 7 years and when I say that I mean it everyday I’m in the bathroom 10-20 times and always in gut pain and bleeding, I am a landscaper and love my job but have a hard time always being on time even though the company I work for is amazing and very understanding I’m more asking for advice on remission cause I’m so tired of always in pain and struggling I wanna be able to live my life and one day start a family and be there for my family, be able to go out and live my life and recently feel like I’m chained to the bathroom does anyone have advice on what they had to do to achieve this or am I crazy for thinking I will be remotely normal again?
Hi there, I'm a 25F from Canada. I woke up at 4am this morning, and started vomiting and having diarrhea. I was about to leave the washroom at just about 11am.
My stomach is killing me. It's not the worst pain I've had for a flare up (I was diagnosed less than a year ago due to a horrific flare up).
Im taking Tylenol, I took my mezevant, and anti nausea medications. I am also shipping water. I'm laying in bed with a heat pad.
I'm concerned because there was blood and mucus near the end of my bathroom stay. It's 2:00pm right now, and I'm still in pain. It worsens when I move.
Should I wait a bit longer to see if the pain goes away as I relax?
Living in Canada means that if I go to the hospital, in going to be waiting for the next two days in emergency, just to get fluids, anti nausea, and pain relief.
Last time I went they ran out of beds, so my partner and I had to sleep in the hallway.
Is there another thing I should try? Should I call a clinic or ambulance? I was in 9/10 pain this morning, right now I'm 7/10.
My flare is finally stable enough to get off of prednisone and start budesonide for the first time ever!! I’m so excited!!! prednisone genuinely ruined my life I’m so happy I get to be myself again!! I wanted to share in a community who understands thank you guys:) 🎊
Hello,
I'm a lurker, UC haver. I'm in my 2nd mild flare since being diagnosed (proctitis evolved to UC), about 5 months in. Trying to eliminate some variables, peanut butter being one.
I've been eating a peanut butter sandwich for breakfast ever since I can remember (and sometimes as a snack between meals). I've changed every part of my diet besides breakfast, thinking that white bread and creamy peanut butter was safe. My latest target is sodium. I was looking into all natural peanut butters. I bought a jar of Smuckers natural creamy, but when I opened it up, it's not creamy! It's got a bunch of tiny chunks of peanuts in it.
I then bought Whole foods 365 all natural. Same thing! Little tiny chunks of peanuts.
I also bought a few other "natural" ones, and they are indeed creamy but they also have palm oil, which is probably fine, but I'd like to try just straight peanuts peanut butter. This makes me then assume that you can't get that real creamy texture without some sort of oil added.
Anyone tried these while in flair? I'm worried these little pebbles of peanut chunks will tear up my intestines. I feel like I'm close to getting out of this flare and don't want to take two steps back.
I’ve been on remicade for about 9 years and have been in remission for almost as long. Ive had very few side effects, mainly because I reduced stress in my life but I would occasionally get migraines that would make it so I couldn’t read or operate simple devices like my phone. I only throw that in there because it took me many years to figure out that the migraines were a side effect of the meds.
In the past 9 months I’ve had a lot of medical issues that went along with changes in stress levels. I had severe tmj that caused my 2 months of vertigo. I was clenching my jaw while I sleep and was able to address this with PT.
But this post isn’t about migraines or tmj. This is about the most current hell I’m living in. About 6 months ago I started noticing hard lumps in my groin area and pimples all over my legs. They seemed to come around when it was time for my infusion and then clear up. I eventually developed dry red patches of skin on my legs and arm pitts that anti fungal cream would clear up. I still get the hard lumps and pimples but now I have what looks like bug bites all over my body. I am itchy ALL OVER. My skin and scalp itch and the back of my throat itches. I might have poison oak on the back of my neck. My skin, where it itches, is red and puffy. I’ve checked my bedding for bed bugs, the cats for flees and found no bugs.
Has anyone experienced anything like this on their biologic? I’m worried that I’ll have to go through the trial and error of finding an alternative med to remicade, which happened when the generic version came out and gave me near constant migraines. I’m just so uncomfortable right now.
I’m freaking out and need to hear some experiences. I have been on entyvio for a little over a year now and it’s been great. Lately I haven’t had any symptoms that I’ve noticed besides potentially some mild hemorrhoids. But tonight I all of a sudden had diarrhea with quite a bit of blood in the toilet. I don’t know where this is coming from because I’ve felt fine all day up until needing to use the bathroom just now. Is it possible the bleeding I saw could be from the hemorrhoids? I drank a bit on Saturday but I was fine all day Sunday and I haven’t had issues with drinking with UC in the past. Could this be causing it? Am I out of remission?
So some background... I was initially diagnosed about 30 years ago (I'm now 63M). Initially I was in the hospital for a week, steroids to control the UC. Since then, I have been off and on various maintenance drugs... they would work for me for a while, then quit working
Overall I've been very lucky... very few flare-ups. My last flare-up was Jul24... I took prednisone at the time (for a couple of weeks?) to control it, then started on mesalamine (4.8mg/day). Over the past 1 1/2 years I reduced my mesalamine to 2.4mg/day (with consulting my gastro of course)
About three weeks ago I started getting a flare-up. After about 2 weeks it progressed to blood in stool, mucusy, 12-16 BMs/day, the whole nine yards
Prescribed Prednisone... 40mg/day for 7 days, then 35 for 7 days, etc. After a week, the flare-up started to be controlled... BMs down to 8-12 and blood only every other BM. Last Friday (a week after starting prednisone) I got scoped... my gastro said it wasn't getting better quickly enough and wanted me admitted and put on infliximab. Here were her results:
"Impression:
- The examined portion of the ileum was normal.
- Severe inflammation throughout the colon, endoscopic appearance is
most consistent with severe Crohn's colitis given deep, serpentine
ulcerations with more severe inflammation in R colon compared to L
colon. This was severe, worsened compared to previous examinations.
Biopsied."
I didn't want to get admitted... I countered that I wanted to stay on 40mg Prednisone for a second week (then start tapering)
Doctor is mad at me, wife is mad at me, etc. But I really feel it's getting better... 6 BMs yesterday, only one with any blood. BM so far today is a bit more solid (still nowhere near normal).
I just didn't and don't think it was bad enough to require hospitalization and felt taking the extra week of just oral prednisone would be enough (I still do)
So... thoughts from others? Am I being an ass? Taking too much of a chance w/my health?
Currently, 8:43 am and my first infusion is at 9:30, kinda nervous. Any advice, just thinking about all those side effects 😅, very worried but trying not to be. This is my first step to remission i hope after 1 & a 1/2 years of diagnosis and 3 dosages of pred 😔😔
I recently posted about how after being diagnosed with UC at age 4, having since been in remission for 15 years or so (for the most part), ive started having what seems to be a very uncomfortable flare a couple months postpartum at age 25. Now for several weeks my subjective experience was BRUTAL; bad stomach cramps, fatigue, blood and mucus in almost every BM, tenesmus, pretty much constant diarrhea. 2-3 weeks into flare i was finally seen by a new GI who ordered infectious disease panel and calprotectin. Around that time and since it has still been very uncomfortable but improving. Infectious panel negative. Today i both got calprotectin results and had colonoscopy done...Calprotectin was borderline at 100, and colonoscopy showed "granularity in rectum" and "patchy erythema across entire colon" but most concentrated in distal portion. GI doc said "it certainly does not look normal but I do not know whats wrong" and took biopsies of rectum, each colon segment, and end of small intestine. Says histopath results should come in a week. Honestly frustrating for me because subjectively ive *FELT* terrible, but objective test results seem mild so to speak. GI doc seemed very competent and I got the impression she found the findings abnormal but not particularly concerning. Im at such a loss...I know theres *something* wrong but it seems she doesn't think UC is back since according to her "calprotectin is usually exponentially elevated and not just doubled" in IBD and that colonoscopy showed inflammation/bleeding/redness but not severe to the point of total ulceration..
I was diagnosed 2 years ago and have not had a flair since. Currently on mesalamine, past couple weeks have been pretty damn stressful at work.
This past weekend I suffered extreme fatigue, headaches, and more bowel movements than I usually have. Slight stomach pain has since gone away, I feel better this morning but still sluggish. I slept a lot over the weekend. Movements are loose but no blood or mucus is present.
This would basically be my first flair since diagnosis, which I believe is stress induced. I take my meds regularly and have a pretty active lifestyle. My question is, if you flair does it always mean your meds are now failing? I feel like this is clearly stress induced, I really do not want to go on biologics unless it’s 100% needed.
I am hoping with some needed self care I will get back to normal, but the thought of my meds potentially failing is weighing on me.
Are calcium tablets not prescribed alongside budesonide steroids? I used to get them with prednisolone
Hey everyone. Long-time lurker here. This sub has been a huge resource for me over the years, so I wanted to finally share something of my own in case it helps someone else connect dots earlier than I did.
I was diagnosed with mild UC in 2021 and stayed in a pretty solid remission for a few years on mesalamine alone. Then 2024 hit, and I had the worst flare of my life. First hospitalization, first exposure to steroids, and the start of a long stretch of being on and off prednisone (about 4 times over ~1.5 years).
I failed Humira, switched to Rinvoq, and eventually landed with a new GI team (worth the 6-month wait... they’re incredible). Right now I’m on Rinvoq + Tremfya, tapering my Rinvoq dose. My calprotectin dropped from 3800+ to ~150, and for the first time in a long time… I felt like myself again.
Since late 2025 into early 2026, I was back in the gym, running, lifting, put on 15 lbs of muscle, working out 3–4x/week. Life felt normal again.
Then late February… my hip started bothering me.
At first it felt like a tight muscle. Then it turned into:
Within a couple weeks, I went from “this is annoying” to barely being able to walk. One morning, I woke up and couldn’t stand at all.
X-ray showed nothing. MRI (after a brutal 3-week wait and a miserable work trip on a cane) gave the answer: Avascular necrosis (AVN) — my left hip is ~80% collapsed. Right hip showing early signs too.
The likely cause? Steroid use. That hit hard.
The same medication that pulled me out of a life-threatening flare. That made me feel superhuman. Quietly damaged my joints in the background. I’m now scheduled for a total hip replacement (left side) in mid-May, with the right side likely to follow eventually.
I’m 38 m. Active. Finally got my UC under control. And suddenly I’m here.
That said — I’m not posting this to be doom-and-gloom.
I’ve learned:
Right now, the hardest part is the waiting, and not being able to move, work out, or just exist without pain/crutches. But mentally, I’m in a much better place than when I first heard the news.
Why I’m sharing:
This sub has reminded me countless times that I’m not alone, even when I never posted. So if you’ve dealt with AVN, you’ve had a hip replacement (especially younger), you’re navigating steroid side effects... I’d really appreciate hearing your experience.
And if you’ve got questions about anything I’ve gone through, I would love to chat.
Much love to this community. You’ve helped more than you probably realize.
my brother got put on meds and got better a little, but then he got put on another medication and it completely destroyed his stomach and he got in so much pain so he went to the hospital and they took him off medications.
but now that hes off medications hes got thick nails that are like raised weirdly and his hair is falling out hes got a huge bald spot.
im so worried and so unhappy this is happening to him, my family are wondering whether to send him to germany for medical treatment because they heard its better but im not sure.
We are in the uk.
is this just ingrown hairs? the worst one developed almost 4 years ago when I was in my 3rd trimester of pregnancy and recently before diagnosis i developed a couple on my butt cheeks and my other leg. I don’t remember ever shaving my rear. has anyone experienced it? I must’ve had had issues with uc for a long time.
I've been working a very intense job the last few months. Very long hours. And the first day of the job happened to be the first day of a new flare up. I should have been treated immediately but I stupidly hoped it might go away as sometime it has done. But it didn't. Got worse and worse and ended with the colonoscopy revealing probably the worst flare I've had to date. I was put on 80mg of prednisone. I'm tapering and now on 40mg. Currently really suffering with migraine level headaches. Had to take time off work because of them. I've never taken such a strong course of prednisone before and it's been insane. The initial highs and lows in my brain were crazy. I thought I was going insane before I looked up the mood-swing symptoms. I wasn't actually warned by the doctor beforehand. I guess he thought I knew the drill. Moon face. Weight gain.
I'm happy to be improving and looking ahead to the future with high hopes and a real desire to get fit again and have a good summer.
Just wanted to post since I know we all go through the same thing and it's nice to feel heard sometimes by people who know what it's like :)
Hope you're all well or as well as can be :) x
I (25F/58kg/165cm) cannot eat the foods that made me gain weight so easily anymore. Dairy, cafeine, sugar, etc. Protein shakes also helped but they contain dairy, can't find any dairy free alternatives, plus nuts and dairy free milk costs so much in my country.
Will incorporating more potatoes into my diet help? my body digests so slowly. I can't eat more than 3 meals a day because that puts so much pressure on my colon which then causes my dang hemmorroids to pop out. I'm not underweight but feel very skinny and would like to gain a bit
Been in remission now for 2 weeks.
Been on Rinvoq since 01/04, got off latest prednisone taper on 06/04, from 07/04 to 15/04 I had fully formed stools, however from 16/04 to 21/04 its been loose/unformed/diarrhoea. Been on this new medication for 3 weeks now (I failed Infliximab), if it hasn’t properly stabilised me by 3 weeks have I effectively failed? I can’t imagine my stools just miraculously becoming formed over the next 1/2 weeks. Also been dealing with stomach aches for weeks.
Hi everyone, I am a kid with severe collitis who failed multiple biologics and this drug apparently has a low chance of working for me. I understand the potential side effects and what not. Anyways I was wondering if anyone here has used this and how their experience went. Is there anyone else with severe collitis who got into remission off of this?
Thanks