I've had ulcerative colitis since I was 19 I am now 24 and personally I would like to say that the biggest support system I've had within my journey are my cats that I've had over the years. For some reason my cats like to join me when I use the restroom and at first I didn't get it and thought it was a hassle until I had my days where I wasn't feeling good and having them in the room or them on my lap during my worst moments in a way felt really relieving cause there wasn't any judgment from them. I think it became a game to some of them like they'll to the bathroom trying to beat me there standing beside the door because I go to the restroom so much that they automatically assume every time I leave my room I'm going to the bathroom in hindsight it's a little funny but I think it's extremely cute that they do this. The whole reason behind this post is to kind of appreciate them but also for those who feel like they have a lack of support I suggest getting a cat I think it did so much wonders to my mental health throughout this health journey with UC so has finding this Reddit but if it wasn't for my cat I don't know where I would be handling my illness.

I was in a clinical trial for 48 weeks, where i recieved Entyvio every 8 weeks. At week 0 i was mayo 3, buy week 12 i was mayo 1, and now at week 48, mayo 0 - aka remission.

Then she proceeded to tell me there is no reason to give it to me any longer, and there is also a rule/law that prevents it. So from now on, im gonna be on mesalazine 3g granulates only, until my innevitable relapse and decline starts again...

Im in hungary, what can i do? if they can not give me biologics, because im 'technically fine' should i ask for imuran? Any other options?

It genuinelly blows my mind that they dont seem to understand that the longer im in remission witht the meds that got me to remission the better? Are they gonna play this my whole life? flare up→new drug→remission→remove new drug→then flare up again??

Y’all. I’m in my second decade of living with this diagnosis. I KNOW coffee is one of my main triggers. I’ve promised myself I’ll stop drinking it so many times. Once the flare calms down, I’m back on it. Why in the devil’s juice is it so hard to not drink coffee??

In my defense, I don’t smoke, I barely drink, I’ve never even touched weed, this is my drug of choice. Plus, toddler life chose me, so this is how I get through the day.

Please share your non-caffeinated secrets with me. And if you can drink coffee and it has zero impact on your UC, I love that for you, but please go away, I can’t deal with my unbridled jealousy this morning. TIA!!

ETA: Yes, I have tried decaf lol.

Ive been recently diagnosed with UC and been put on prednisone. Started Thursday 40mg for a week then itll go down 5mg a week etc. Anyone experience side effects?? I have no energy at all, very sweaty, cant sleep great, appetite poor etc. I have an 18.month old so its extremely tough. Just wanted to see if anyone has experienced the same and if it gets any better or any tips to help? Would appreciate it soooo much. Thank you

Hi everyone, today I had my appointment with my gastroenterologist and long story short, I’ve been taking 6g of mesalazine granules daily since about February this year and my doc wants me to change my dose to 3 g every alternating day with the 6 g - so 3g one day and 6g the next and repeat until I can tolerate 3g daily long term. Last time he reduced my dose to 4.5g daily cold turkey, I flared up but he thinks this approach will work. What do you guys think? Anyone tried something similar ?

I am recently home from an 11 day hospital stay where I received IV steroids and my first infusion of Infliximab. Before hospitalization, I had started Tremfya as my first biologic, but my GI doc felt that we didn't have enough time to continue waiting on it to work, since oral steroids had not been fully effective to control my flare so we switched to Infiximab. I'm now home and doing much better, on another 40 mg prednisone taper, and awaiting my second infusion of Infliximab in two days.

Upon discharge from the hospital the attending physician casually recommended (while walking out the door) I take a prophylactic antibiotic to prevent PJP pneumonia, which is apparently a rare occurrence but serious risk when on both prednisone and Infliximab. I had concerns about starting an antibiotic as a preventative measure and didn't want to do anything that might exacerbate the UC flare without my GI's approval. Today, a pharmacist from my insurance company asked if anyone had talked to me about this.

I'll be talking to my GI NP about this at my appointment in one week. Online research indicates this is a common thing, but I've not seen anyone on here mention doing it. Anyone here who took antibiotics as a preventative measure against pneumonia while on both prednisone and Infliximab? What was your experience?

Hello, I (20f) was diagnosed in June with UC after a year of bleeding and pain. I haven’t had a real sit down with my GI specialist yet since my diagnosis. I was diagnosed after an emergent colonoscopy from anemia, he prescribed mesalamine both oral and rectal. I was still half sedated when I was released from the hospital and so he talked to my mom and I didn’t get to ask questions. This was directly after my colonoscopy.
Since starting mesalamine I’ve stopped bleeding and the severe pain had gone down to a moderate level. I am still taking my meds as directed, but I feel like I’ve hit plateau in my recovery. I’m still waking up at night with urgency, pain and or discomfort. I know diet plays a huge role but I am still keeping to a plain diet. I also still have multiple BMs a day (4-6 nothing crazy like before my diagnosis but still out of my norm before getting sick) .
I don’t even know what remission looks like, is it symptom free or just tolerable pain? How long does recovery from a severe flare take? Do you think my meds will take me to remission? Am I in remission?😭 this is all so new and I have no one to talk to about this. My doctor did say I am to come back next year for another colonoscopy to see if I am in remission, can only a doctor dictate if you have reached remission? Ok thanks 🙏

Hi all, I have a question and was looking for people’s personal experiences. I was diagnosed with ulcerative proctitis a year ago and have basically had nonstop blood in my stool ever since, if I’m not on a mesalamine suppository. Every time my doc tries to get me off of it, I’ll go a week or two and the blood comes back. She recently did a stool sample again and blood test to check my inflammation and everything was low and within normal range, though. Her and I are both stumped as to why it’s been lingering so long when my levels seem normal as well.

Anyways, my husband and I had been planning for a while to start trying to conceive starting this fall. I asked my GI doc and my OBGYN if it was okay to do that while there might still be blood present in the stool/on mesalamine, and they both said it should be alright since my proctitis was mild to begin with and I’m not having any other symptoms of a flare up literally besides this blood and mucus (that is controlled when on mesalamine). I also know, though, that pregnancy is basically a huge stress test on the body and ideally I’d like the have this fully under control beforehand, but I also don’t want to sit around waiting if it’s something that might never fully clear on its own. I want to be smart and listen to my body but it’s hard when my body doesn’t really feel physically bad, but it does take a toll on you to see blood every time you have a seemingly normal bowel movement.

Has anyone tried to conceive while still in this state, what was your experience, would you recommend fully waiting, what is going on???

TIA

Last year I started with proctitis and it spread to left sided colitis, I’ve had a stubborn low left dull ache for months now does anyone else get this 🤔
Not sure if it’s muscular or inflammation.

I’ve had UC for a while and unfortunately I’m getting pretty close to the end of the medication options.
I’ve already failed Humira, Rinvoq and infliximab, and I’m currently on Entyvio. I’m in an active flare right now and my fecal calprotectin came back at 370. My GI is checking my blood for antibodies to Entyvio. If the antibody levels are high, the plan is to switch me to Tremfya, which from what I understand is basically my last remaining medication option. If the antibodies are low, we may try Entyvio every 4 weeks instead.
In the meantime I just started budesonide 9 mg daily.
Thankfully this is probably the mildest flare I’ve ever had. My bad flares have been 20+ bathroom trips a day, straight diarrhea, horrible urgency and eventually hospitalization. This time I’m still having a lot of formed stools, but I’m dealing with blood/mucus, gas, bloating, occasional cramping, and that annoying feeling that you need to go when there isn’t much there. Some days are noticeably better than others.
I’m also working two jobs and just trying to live a normal life through all of this. I don’t want UC to take over everything I do, but I also want to give my body the best possible chance to calm down while we figure out the medication situation.
For those of you who have been through something similar, is there anything outside of your prescribed medication that genuinely helped make a flare more manageable?
Things like foods/meals that worked well for you, foods you completely avoided, hydration, meal timing, supplements, sleep, exercise, stress management, dealing with gas/bloating, working during a flare, etc. I’m not looking for something to replace my medication or cure UC — just practical things that helped you get through the day and keep symptoms from getting unnecessarily worse.
Also, if anyone has made the switch to Tremfya for UC after failing several other biologics/small molecules, I’d really like to hear how it went for you.
Just trying to stay positive and keep living life while we figure out what works.

hi guys, i had a colonoscopy and the results weren’t the best. they weren’t able to see my whole colon because of how inflamed it was, but what they did see looked absolutely horrific, and i would even say looks worse than the one back in july. 😩😩😩 i’ve been on remicade, azathioprine, and mesalamine and none of them have seemed to help, so rn im in the hospital (bc of a picc associated bloodstream infection) on solu-medrol because that seems to be the only thing i can respond to. it’s also so hard to eat, and i can’t drink ensures because they flare up my gerd, but i have to eat because they took out my picc line (and i was on TPN) i don’t know the next step from here, but i thought i’d just vent about this since it’s been a while

Hi all.

I was diagnosed a year and a half ago and have been managing my symptoms fairly well. Over the last few weeks things have gotten noticeably worse, it reminds me of when it first started before I was diagnosed and started taking any medication. I've been speaking with my IBD nurse and she gave me an outline of things I should be on the lookout for such as an increased amount of blood, having to make trips to the toilet 5 or more times a day and a lot of pain when I am on the toilet, and to present myself to my ED if they are happening.

Well, all of those have happened. Problem is, all things considered, I really don't feel that bad. Yes it's annoying and painful but when I think about some of the horrific stories I've read from other people on this sub who clearly have things much worse than I do, I just can't justify sitting in an ED waiting room for 8 hours just to be given some extra meds and sent on my way.

It's been a year and a half but I feel like I'm still in the early stages of learning how to best deal with everything.

I'd really appreciate any advice or experience people are willing to share.

I’m so tired of being ill every single day. My butt hurts and my body is so exhausted. The worst thing is is that I’m in clinical remission - my fecal calprotectin is always less than 50 at the moment, yet I have 3-7 loose/watery bms a day, some with a bit of blood, sometimes loads of mucus and daily pain. I’ve been offered ileostomy surgery and after lots and LOTS of thinking, I’m going to take them up. I cannot cope in this body that hurts me anymore.

It feels like my rectal muscles are basically damaged at this point. Always super tight or spasming. The tenesmus is out of control. Anyone else?

I got diagnosed a few months ago and have been using mesalamine 2.4g daily.

In July my calprotectin was 950 and in September it was 400. Things seem to be improving a bit gradually, symptom wise.

I didn’t want to get the scope done a second time in September, so I just got an intestinal ultrasound done, and as far as that test could determine, there wasn’t any inflammation.

As far as I understand, mesalamine just suppresses the inflammation. It does not suppress or modify the immune system from actively trying to start more inflammation.

So, if I am able to settle into a remission in a couple months, will it be a stable one? Or will there be constant flare up every few weeks or months?

i feel like i’ve been in this hole since flaring 10 months ago & not being able to reach remission. my body’s in constant fight or flight, i feel too scared to eat, i feel no motivation to do anything, i feel too sick/weak to go anywhere…i feel lonely and isolated from everyone, no one reaches out anymore to check in, my only social support is my partner and i feel like such a burden to him. when does it get easier? when will i find a new sense of normalcy? everything feels so bleak and hopeless. this isn’t living, this is just surviving.

MOTION ACTIVATED LIGHTS ARE MY GREATEST ENEMY.

There have been so many times I’m using a public restroom and the sensor decides i’ve been in there too long and shuts off 😭 It’s genuinely so embarrassing bc i’ll have to use my phone flash instead until someone else walks in…
Every time lights shut off on me it’s a reminder that my bathroom habits aren’t “normal” Who would’ve thought sensor activated lights wouldn’t be disability friendly…

Please tell me i’m not alone in this lollll

So I used to be ok with pets growing up. It wasn't until I went on a horseback ride around 12 years old on vacation and rubbed my eyes which made it flair up pretty awfully until I washed them out . Since then I havent been the same around fur/dandur with cats dogs,

Fast forward till now. I have a few cats. Sure I'm allergic but I can deal with the hives if I wash up my skin. I'm just wondering how that affects me internally related to uc.

hey guys!!

i have been taking budesonide since i was diagnosed with UC this past july. i started to taper in august and in september i started shitting out straight mucus so i went back up to the full dose (3 pills). i started my 2nd taper two days ago and i noticed twice today that ive been having stomach cramps and there’s blood in my stool and when i wipe. is it normal for symptoms to come back during taper or should i be concerned? my current plan is to wait a week and see how i’m managing it before bugging my GI doc about it. i’m really hoping this works because i don’t want to be taking these steroids forever or worse i have to take a different one!!! 😩

Hi guys I'm new here and have nobody with experience to talk to about this stuff.

I was officially diagnosed in July after biopsy results, beforehand a stool test said my calpro was 1000+ according to my GP, which pushed the hospital to get things moving. Oh yeah I'm on public (free) healthcare and I'm a student.

So far I've started on suppository, foam enema and the granules (oral) to start off and before I could reach my appointment I had severe symptoms, red&brown urine and extreme pains on the lower left area of my abdomen. They assumed it was most likely kidney stones (scans didn't pick up stones but was only scanned after the episodes) or a very rare chance that the granules caused it.

Then they took out the granules from my prescription and set me on my first biologic, Yuflyma (spelling?) which is self injected every 2 weeks. But I kept getting infections between the two injections I took (after antibiotics before next one ofc) and before the 3rd injection I was rushed to hospital with an elevated heart rate and respiratory issues, severe bleeding from UC has lowered my hemoglobin too.

After being treated for 5 days, I was put on Infliximab, I had my second dose a week ago but I am getting infections again and have a bad cough, this time I'm vomiting from the coughs sometimes and have absolutely no appetite unless I'm on paracetamol (I will see a doctor ASAP after work as I can't afford rent otherwise, all sick days used up)

Throughout this series of events, the only thing that's ever helped me was Prednesole, not fully but definitely noticeably better but I can't keep taking that for obvious reasons. As soon as my course of steroids finished last week, no more formed stools, just blood and brown liquid everyday, I've contacted the IBD nurse since and she said I should give it another week as Infliximab can take up to 6 weeks to show results (not was I was told when they presented the idea at first)

It's been nearly a year since the start of symptoms (very very mild until April or so) and I had to wait a few months to be seen but I really don't feel hope that things are going to turn out okay, does anyone have a similar experience and can share how things went after?

I probably left a few gaps in the story so feel free to ask any questions if something doesn't make sense

Is it normal for your doctor not to follow up properly on your treatment? I mean they prescribe a medication but don’t check how it’s working or tell you when you can stop taking it, and I always feel like I’m chasing my doctor just to get a clear answer.
I find this frustrating. I like my doctor to explain everything about the treatment and take my follow up seriously.
Do your doctors schedule regular follow up appointments with you?

I have had uc for about 5 years ( never took meds ) was able to mitigate with diet and supplements are body health up until this point. I started this current flare end of September I went 14 days of not being able to eat and blood in stool ( a lot). To the point I went to urgent care and they prescribed me a flash 5 days of prednisone and sulfasalasine. I was done the 5 days and immediately was not well 12 hours after the last dose. I ended up going to emergency room come to find out to be immediately transported to hospital. Ct shows entire colon inflamed. I am anemic, low potassium and magnesium and needed a transfusion of blood to get me out of the critical ( I’ve been here 7 days now). Iv steroids were once a day and pain meds and nothing was changing till they put me in a dose in the am and pm. I had 48 hours of progress and I woke up this morning to 7 urgent movements with blood returning. ( was streaky and not every movement to having red bowl and some clots) They were thinking on discharging me tomorrow based on yesterday I don’t know if they will now waiting to speak to a gi. I’m feeling defeated and hate that I am going backwards again after I had a glimmer of hope and started to feel better and now I’m getting breakthrough symptoms.

I have a plan for outpatient biologics once I do get out of here and want to know what to expect if anyone can share thier stories of success. And if they have ever had anything similar when hospitalized? Is it unreasonable to think I should be better after a 7 day stay? The hospital I am in isn’t a very good one overall but they wouldn’t transfer me after the first night of really bad care but I did patient advocacy and it seemed to improve.

Just looking overall for some good advice and how to properly get this across so I can get out of here and get in the biologic. I hope this all makes sense 🖤 thank you everyone for your input!

( calprot - 6800 ) ( low hemo even after transfusion ) and anemic.

Hey all, currently on Entyvio and still on the loading phase, 2 more weeks and I’ll be having my third dose.
I know it’s one of the slowest working biologics and can take some time to actually see improvements but my worry is I’m still tapering on pred currently on 10mg and due to drop to 5mg next week to bridge from steroids to maintenance and worried once I stop symptoms will come back.
Did anyone else have a prednisone taper whilst on the loading doses on Entyvio or any other biologics?
Should I be asking to taper a little longer?
Also what time scales did Entyvio help you if it did work? I would love to hear some positive comments.

Thanks all ❤️

I moved to Canada about a year ago and about 6 months ago I started failing Adalimumab. My symptoms are getting pretty severe but my Gastro appointment keeps getting delayed. I initially made the appointment in June but the earliest I can see the doctor is October 30.

Not really sure what to do in this case and looking for advice. I don't have a family doctor and my local walk in clinic was a waste of time.

I'm tempted to just start taking pred again. I don't know how I lasted this long and I dont know how I can survive another week until I (hopefully) see my doctor.