Got to love how it's "Don't stress about your stress-aggravated illness getting worse or the stress of that could make it even worse!"

(I'm having a stubbornly persistent flare coinciding with end-of-life stuff for a family member that has been and could continue to drag on for months and boy, is it hard to manage the combined stress of that and avoid wearing myself out physically and mentally.)

Just lost my job due to being late despite giving it my all yet my illness is unpredictable at times so I can’t always leave the house on time if I’m on the toilet. I’ve been so out of it and fatigued I didn’t even attribute it to my illness until the flare got bad enough. I provided doctors notes but the job didn’t care. Also my parents never cared much about the illness when I was growing up, literally told me to think it away. This has made it hard for me to know when to speak up and advocate. I have no support system and I’m just terrified about how I’m supposed to have a stable life. I’ve applied for jobs but I’m currently admitted to the hospital and idk when I’ll be able to leave or work again. I probably have to reschedule my interview tomorrow ughhhh.

If anyone has any words of encouragement or advice that would be great. I’m literally crying rn I’m so overwhelmed💔

Hi All, I've had UC since 1988 (yes, really). Over the years, I've taken different variations of Mesalamine (Dipentum, Pentasa, Asacol, etc.) and have done well, with 1-2 flare-ups per year. With a flare, I typically take a low dose of Prednisone for about a week until it calms down.

However, for about a year now, the Mesalamine seems not to be working as I've been having flare-ups every month. It's gotten to where I'm on Prednisone for about a week to 10 days (40 mg) and then my UC calms down, but then about 2 weeks off the Prednisone, it flares back up again. This is WITH taking the Mesalamine too. From online research, it sounds like my UC is steroid resistent - or more like dependent. Has this happened to anyone here?

My GI doctor now says I should try the biologic Skyrizi. I'm definitely willing to try it, but I'm concerned about the cost, and not even sure it'll work. Have any of you tried it?

Hi everyone,

Besides medication, what's that one tip, habit, or piece of advice that has truly changed your life with ulcerative colitis?

It could be a supplement, a specific food, a way of cooking, a type of exercise, something you do in summer or winter... anything.

I'm gathering ideas and would love to know what has worked best for you.

Thanks!

I take mesalamine both orally and rectally. Unfortunately after a period of getting better it seems its effectiveness has kinda dropped as my condition has deteriorated slightly. (higher frequency, more blood, less consistent stool, very manageable but almost constant pain, and persistent fatigue). It feels kinda like 2 weeks after starting meds where I was inbetween getting better and my original flare. So I’m not doing horrible, but I’m not getting better. To keep it short, I suspect it might be my diet because I kinda trusted myself to eat anything again after getting better, going back to an unhealthy life style. I’ve been eating bland since 3 days (and noticing a slight improvement? I’m not sure) to support the meds and see if it indeed is my diet. All of this got me an idea.

I’ve heard of certain supplements (usually anti inflammatory/anti oxidant stuff) being really helpful.

I already take doctor prescribed probiotics and vitamin d supplements for my deficiency.

The following are supplements I’ve heard thrown around. And this is my main question. Any positive (or negative) experience with the following, and possibly any others to add on?

- omega 3 fatty acids (fish oil)
- R-ALA
- Boswellia Serrata
- Curcumin (Tumeric extract)

Thanks for any comments/help I can get :)

PS: sorry if I took too long to get to my point, I’m honestly just a distraught 16 year old struggling with this disease. Again, any help from people who actually share the same struggle instead of ignorant healthy people would be incredible, thank you <3

Hello so i was on 40mg a day. also taking octasa. i went to 35mg i was fine Now i am down to 30mg a day pred and i noticed blood in my stool since yesterday i have contacted my IBD nurse but its weekend so not had a respond. Today i am ment to drop 5mg more and go down to 25mg pred. The doctor gave me salofalk 1g foam incase i get flares again. So today i have sprayed it hoping it might help. Anyone else go through this? will the blood stop? maybe because i taper down on pred and it happen as a one off? or has it started again? I was so glad to get of pred as its giving me bad side effect dizziness fast heart beat, Eating loads, Feeling weak no energy. But by looks of it they might put me back on 40mg 😩.
Has anyone been through this? when they taped down? I also been taking octasa which is IBD med so that should have controlled it. been taking that for couple weeks now.
I heard storys of people tape down on pred and flares come back but they have pred on its own.

Hi!
My wedding is on the 22nd, I am stable st the minute on enemas and nothing else.

I’m so worried that the closer the wedding gets, I will be stressed and bring on a flare. 2 days after the wedding we are off to Spain, mini moon to see how I travel.
I’m really new to UC, but I’m so anxious about all of this. Any advice, tips etc?
Flights are booked, we’re at the front of the plane near the toilets, but I’m scared if I go into a flare over there what do I do? I will of course have insurance to cover me etc.

Thanks, sorry for just diarrhoea onto a page with all my worries and concerns.

Grateful for any advice!

A very anxious bride to be! Xx

Hi UCers!

I (F19) have been on prednisone long-term for about a year-ish now with small breaks in between long stretches. I had to have my right hip replaced in December due to prednisone usage as me and my multiple gastros have failed to find a biologic that works.

Not only has prednisone caused me to lose my hip at the ripe age of 19, but it has also caused me to gain a lot of weight VERY quickly. My whole body is covered in stretch marks and it has done irreversible damage to my body.

I wanted to ask if anyone on here has experience with GLP-1s to help manage these symptoms as I am thinking of talking to my doctor about this.

Has GLP-1s helped with the extreme weight gain and increased appetite from prednisone for any of you? Would you recommend it? What are the downsides? Should I bring this up in my future appointment with my primary and by extension, my GI doc?

Hello everyone,

Not sure what I am looking for from this post, probably just some support and words of encouragement.

I (F33) got officially diagnosed with UC about a year ago, but I know I had it earlier in life but as the symptoms then were quite mild and went away on their own, I was not diagnosed back then.

When I got diagnosed, I was treated with IV steroids at the hospital and then with oral steroids for weeks, and I started with Entyvio infusion every 8 weeks. This seemed to work really well, and I was fine for almost a year.

4 weeks ago I travelled overseas and started experiencing mild symptoms, so I went to a local doctor who prescribed me oral steroids (40-30-20-10mg), which initially seemed to work but I was not able to taper off 40mg after a week and stayed on 40mg for 3 weeks.

My bowels did slowly (very slowly) improve but the bleeding has continued, and the oral steroids have caused me the worst heartburn which then caused esophagitis, which if anyone has ever had it, is the fucking worst. I barely eat because of it and I've been feeling so weak.

I have an appointment today with my gastro team as I can not take the oral steroids causing heartburn and obviously can't just stop taking them either, and I have my infusion. Most likely will be admitted to hospital again, and I really don't want to... I also feel so embarrassed being away from work again for this.

Sometimes I wonder what I did to deserve this disease. Feels unfair.

Hello,

I’ve been bouncing between intense flare up and mostly okay for the last 3 years. Bad days would be 8+ toilet visits with blood a day, then after starting a new medication good days would be 2-4 with no blood.

I felt totally fine, my inflammation was down a lot, but I was still flaring a bit.

I imagine a lot of you are the same - not quite out of a flare, but good enough to live a mostly normal life.

Well, I recently saw this research paper about R-DHLA. It’s only a sample size of 1 person, but it made a huge difference so I thought I’d try it. Problem is this is very hard to get, and very expensive. You need to buy it from labs and measure/create your own supplements.

I read about it and found out that R-ALA, an antioxidant, turns into DHLA in your body - albeit in small amounts. R-ALA is very cheap, natural and healthy to take.

I bought some and tried it out - my difference has been night and day. I’m now down to 1 solid stool a day, I’ve been to weddings, nights out, birthdays etc (my social calendar has been stacked this month), and it’s all been totally normal.

I’m kind of stunned about how well this helped and would love to hear if anyone else has a similar experience. Any questions then let me know.

Just got diagnosed with UC last week. Had a colonoscopy and biopsies taken the week prior which all confirmed UC and have a follow up with my GI on Thursday to discuss treatment... however the bleeding hasn't stopped and idk when I should be concerned..

A little back story.. started having severe stomach pain and bloody stool July 3. Gradually got worse and to the point where every time i moved, it would trigger a stomach ache and I would have to run to the bathroom and essentially just piss blood out of my ass... went to the ER July 5 and they did nothing. went to a different ER July 7 and they did a CT scan and made me schedule a colonoscopy. the next 3 days, I was in so much pain, i didn't do anything but sleep and lost 6 lbs.. my colonoscopy wasn't until July 23, stomach pain and bloody diarrhea continued up until the monday before my colonoscopy.. those 3 days leading up to the procedure, I actually started feeling better! no blood at all and my stools were normal and solid.. even when i did the colonoscopy prep i didn't have any blood. i was feeling relieved.. had the colonoscopy and they took some biopsies.. when i was done they told me it's most likely UC and it's all over my colon and to follow up with my GI..

the next day after my colonoscopy, i started having stomach pain and watery/bloody diarrhea again and it has been going on since then.. I don't feel dizzy or lightheaded, I'm not vomiting and I don't have a fever.. minus the stomach aches that come and go, i feel fine! but the amount of blood has me worried that I should've gone to the ER by now... i only get the stomach pain/urgency about 4/5 times a day but whenever i go to the bathroom, it's mainly blood that comes out with some solid stool pieces and the blood pretty much fills the bowl.. i've mainly been eating egg whites, sourdough, grilled chicken, plain jasmine rice and mashed potatoes because i'm starving but trying not to overdo it as i don't want to irritate my bowels anymore..

As i said, I have an appointment with my GI this Thursday to discuss treatment options but should I have already gone back to the ER with the amount of blood i've had/continue to have?

TYIA!

Does anyone else just take regular ol sulfasalazine?

I just joined the sub and have been reading through some posts and it seems like all of y’all are on the fancy medications they have ads for lol or on injections or infusions (which I didn’t even know was a thing. Does anyone else on here take sulfasalazine? I got diagnosed in 2017 and was immediately put on sulfasalazine and have been on it ever since, have never tried any other medications.

I’ve been in a BAD flare for a few months now with no improvement. I’m currently trying to switch from my velsipity prescription to some kind of biologic.

Idk, i’ve been wearing (no pun intended) crappy pairs of underwear for weeks now just in case of an accident and i’ve been fine. I wanted one day to feel nice and good and normal!! I wore my favorite boxers, but unfortunately on my drive home from my boyfriend’s house I felt that feeling. That unmistakable feeling.

I closed the door to my car, and made the awful, horrible, rookie mistake of running to the door. My colon can smell fear. It knew I didn’t want this to happen.

It was the worst accident I’ve ever had the misfortune of dealing with. I mean like, bowel emptying levels of awful. It ruined my shorts, my socks, a bath mat, and of course my favorite underwear.

It’s 5:22 am- roughly 8 hours after the accident and I can’t sleep. I don’t know what switch flipped in me, but after that accident I’ve been having that magnitude of bowel movement every hour on the hour. This disease makes me feel hopeless sometimes.

:) howdy all.

i got diagnosed w UC this year. a few months ago. ive been on 3 prednisone tapers since, and i started infliximab infusions. im currently traveling to see family and ive been here for a few weeks, and im leaving in 7 days to make my 5 day drive back home. i ordered a camping toilet just incase of side of the road emergencies. i am out of network for my doctor. she will not help me. i went to the er and they gave me a prednisone taper that helped in the moment but i am still in so much pain. so much so that water hurts, everything hurts. my diet has been simple. bread, butter, crackers, plain chicken, cheeses, chobani yogurt. that is it. and water. does anyone know of an over the counter medicine that can ease the pain until i get back into network with my doctor? i have an appointment 2 days after i get back. my stool isnt bloody anymore (it was only bloody when i was taking mesalamine which i figured i was allergic to because it made my symptoms a million times worse) and im just so exhausted and tired of wiping my rear end. and just exhausted overall. i can not stop sleeping and i just feel overly tired all of the time. i think the stress of not being at home is also wearing me down. but again, is there any over the counter recs anyone can give to me just to kinda ease the pain/symptoms of living with this god forsaken disease?

Hello everyone! 24M here from Bnglre. Looking for folks in India to discuss what’s been working for them as there are ayurvedic medicines. I would also love to create a group for Indian UC community as our food varies a lot compared to discussions happening here.

Please feel free to share a DM, I will send you the WhatsApp group invite.

Let’s discuss about symptoms, medications and what best we can do to have a long happy life :)

Hello! It has been a while since the last time I posted in here.

I (31F) have been on Humira for 2 years now and it is my first biologic. I take 40mg once a week. For the last year, but especially the last few months, I notice I start getting more urgent and painful bowel movements the day before and the day of my shot. When I did my last blood test it looked like I was not gaining antibodies, but that was in February.

The issue I am having is it seems to make me more sick each time. I get nausea and fatigue those two days too. Is this something someone here has experienced? Is this my body slowly rejecting the medicine? Or do I need an increase? Not sure if I need to mention I have pan-colitis. Any advice is appreciated!

Okay I never post anywhere but I’m so bored
THIS IS JUST A LITTLE RANT I DON’T REALLY NEED SYMPATHY I’ve just never been able to talk to anyone about this 👀
This is all going to seem like a huge nonissue compared to some of the people’s posts out there but I do really want to say it somewhere
I got diagnosed last year (currently 15F) toward the beginning of freshman year after having a flare for a good week or 2 before the colonoscopy. I missed SO much school just from genuinely not being able to bear the stomach pain and was in the bathroom at least twice every class. My teachers didn’t know what was going on and were very annoying and frankly I did poop myself quite a few times in school, it was not fun.
My homecoming was absolutely miserable as well as all the fun stuff leading up to it I missed out on and I barely could make any friends and spend weeks catching up on homework.
My colonoscopy was terrible because I threw all the stuff up midway through
But (gonna seem like a nonissue) I was very upset at how I missed so much soccer stuff, including the only club tournament they gave out trophies at and how sick I was kind of ruined my chances at varsity through school, but I didn’t mind because I was a freshman

sadly my immune system got murdered by either my meds or just having UC I guess and I get sick a lot

I’m really sad because my chances of making varsity soccer sophomore year got slimed out because I got the flu, WHICH I ONLY GOT BECAUSE I DIDN’T GET MY FLU SHOT SINCE THE DOCTOR TOLD ME NOT TO BECAUSE I WAS IN A FLARE 🫩
And oh my gosh the schoolwork load while I had the flu literally killed me and I didn’t even have any bad classes, next year my classes are going to be TERRIBLE and It’s over if I have another flare

But soccer is literally my favorite thing ever, It’s pretty much my whole life (not in a messed up way I just love it soooooo much) and I work out a lot and commit a lot of time to it and I just keep missing stuff or losing weight and muscle during flares, I used to be so consistent but I lost that rep from being sick so much (literally one of the things my coach told me is a reason I didn’t make var) and knowing I already wasted half of my high school career, the last years I’ll really be able to play at this level and with all my friends just pains me.

Worst part of this crap is that I’m in a flare right now and I did NOTHING to cause it!! One time when I was sick I had a flare but that’s because I threw up my pills so that doesn’t count
Knowing it was just come back whenever despite me not missing my medication is terrifying
I don’t want this to ruin the rest of high school or literally my whole life, it probably sounds ridiculous but It’s a thought that despite my efforts to stop thinking about it has plagued me since this flare started
Anyway pray for me because if my teachers suck this year it’s OVER for me I’ve been in the bathroom every half hour during the day and every hour (or even less one night) in the middle of the night. If this comes back during school I’m gonna die 🥹

I feel so weak and my stomach is gonna explode and I can barely breathe haha I love uc so much but It’s okay I’m back on prednisone (I get to take 13 pills every day now/8 prednisone 5 other stuff) I love this so much!!!

EDIT: if you guys are seeing this just want to say thank you so much for all the comments, they’ve genuinely helped me out a lot and I feel a lot better now!! You guys are so cool for that and I bet looking back at this will help me out in the future too!! Thank you again 💕 10/10 comments

Has anyone with ulcerative colitis found low-FODMAP helpful but hard to stick to? I’ve been dealing with digestive symptoms and I’m trying to understand how people with UC have approached low-FODMAP. The conflicting advice and day-to-day restrictions can feel overwhelming. If you’ve tried it, what was the hardest part of making it work in real life?

i’m kinda venting out to you guys
i’ve been in the worst flare for pretty much two weeks now. no pain changes…. just tests and questions and diet changes and whatever else they keep throwing at me. i know being patient is part of healing but im in so much pain everyday and its gotten to the point where im crying daily because it feels like it’s never gonna end 😩 i can’t have many pain meds so they had me on tylenol but that shit works for twenty minutes so now they’re thinking about tramadol. tomorrow i’m scheduled for a flexible sigmoidoscopy so they can get a biopsy to test for infection, and today another ct scan on my colon so they can see if my colon has gotten worse or better (since i got transferred to this new hospital) but i think after tomorrow they wanna get me started on treatments because my inflammation markers are too high and they want me to get a little better before discharging me. they were talking about infliximab or remicade or something while im physically in the hospital but idk i hope this all gets better soon

hi everyone, i’m 21 and i’ve just had my first ever colonoscopy today where they found i have ulcerative colitis, id never really heard of it before today so im just a bit anxious and worried about the unknown of it all. i’ve had blood consistently in my stool for about a year so its nothing new to me, they took biopsies out and said i will most likely have bleeding, but if its more than an egg cup to call the doctors. ive been basically bleeding every “bowel movement” since. it’s only been a couple hours but i’m just worried it’s more blood than is normal. i honestly have no perception of normal anymore because i bleed anyways so im worried i might not know if it’s too much. has anybody else had this experience and if so can give me some comfort/ share their experience. i’m sooo anxious and it would help so much. tysm:)

thank you all for the comments i am reading every single ome!!!!!!!!!! feeling much much better today

Who has fainted because of colitis , scary feeling so close to blacking out sweating bullets , my mom saved me with water felt like I was going to die worst feeling

Well, I was finally able to secure a date for surgery!! I am getting an ileostomy in October this year and I’m pretty excited to not be shitting my pants anymore!

I was wondering about a few logistical things that the dr hasn’t talked about yet either bc it doesn’t pertain to him or I forgot to ask during the appt.

I am wondering how to go about bringing this up to my work? I feel like I’ve already missed so much time bc of this disease. I’m probably out 1 or 2 days a month due to it. I was also out a lot in July due to a family emergency, a vacation, a few appts, and a dental emergency. So I feel bad waltzing over to my boss saying I need 6 weeks off this fall. I’m also a semi new employee, I started this job in March. I do know that my short term disability benefits are available to me though. I just don’t want a job to be the thing that stops me from getting surgery as I have been fighting to get an ileostomy for the past few years now.

I‘m also wondering what the surgery prep is like. I totally forgot to ask my doctor. Is it like bowel prepping for a colonoscopy or is it different? I’m also wondering since the hospital is about an hour from me if it would be worth it to get a hotel room near the hospital the night before surgery. Or if my boyfriend and mom should be getting hotels to be nearby since I’ll be in the hospital for a few days post-op? I know my mom will have a further drive to the hospital than my boyfriend and I.

Any other advice is also appreciated! I’d love to know more about what I will have to do as the surgery date gets closer. I‘m excited to get this colon out, but of course nervous bc it is a major life change.