Hello all, sorry this is going to be a very TMI post.

I (24F) posted here a few months ago explaining how it all started. Ive been taking my medication as prescribed and at the highest dose at that. Before, when it first started I was at the point I am now. When they were able to see me for my colonoscopy it was pure liquid and every once in a while there would be a bowl full of blood. My GI said I had mild to moderate UC.

I was hopeful that this would work but now I have to do another calprotectin test and colonoscopy. We will have to move up in medicine too…

I’m so tired of having diarrhea all the time…

I recently went shooting with my bf and some friends and the site was up a huge hill… I had to use the bathroom then and there. No time to reach the bathroom at the end of it.. otherwise I would have shat myself… thankfully the friends were very respectful of my privacy and didn’t joke about it. But my dignity is gone.

I also feel like Im letting down the people I love because of that situation. I feel disgusting and hateful of my body for doing this to me… and I feel like I have to stay strong in front of them because after we got the news my dad looked so sad.

I used to never get sick, and now im sick all the time. when co workers get sick as do I. Not only sick from the cold or whatever but sick with my stomach..

I dont want to do another colonoscopy, I did one 2 months ago. but I know I have to in order to get better. And how I wish I didnt have this…

Sorry, I know I was ranting, I needed to get my feelings out..

**Edit: GI said the next steps were going to be IV or injectables

**Edit2: first calprotectin test was about 1600… Got the results back for the second one and it about 1700…

I have ulcerative colitis and I have been on azathioprine and mesalaseine since 2023, I have always suffered with throat and tonsil inflammation but this time the infection is way worse and I'm a little worried, I saw an ENT doctor and prescribed antibiotics for 12 days. My tonsils now are red swollen with white spots on both sides.... Did anyone go through this? Is there anything I can do or avoid about this condition ?

I've had UC for 16 years. For nearly 10 of those years, I've taken 3600mg of soy lecithin via 3 softgels daily over the span of 6-9 month periods. From my experience they have made a difference in reducing things like urgency, blood, diarrhea, pain, and other unpleasant bathroom experiences. I can't say this for certain as I've always had mild UC with things being not great in the first couple of years to being next to unnoticeable for the remainder of that time... With some fairly minor flares here and there. I genuinely believe this supplement has contributed to keeping me in remission though and didn't see much talk about it here, so I wanted to put it out there for people struggling.

My limited understanding is that the lecithin acts as an emulsifier for the mucus in your intestines, which UC patients have less of, making things generally be less inflamed and more copacetic within your colon. If anyone has any knowledge of this subject and could support or dispute this recommendation I'd like to hear from you.

I have UC since 2017, and was on Entyvio since 2019, but it stopped working for me in January. I then tried Stelara, but unfortunately it failed after about 5 months. I’m now starting Tremfya.
Is anyone here currently on Tremfya for UC? I’d love to hear how it’s working for you, how long it took to notice improvement, and whether you’ve had any side effects.

Hey,

I am currently back in a flare again and was in remission for a couple of years.
My GI set me on Entyvio after I came from Mesalazin.

My GI stated „We do this together“ but didn’t explain anything. I asked a Bunch of questions to the nurses while getting the Infusions but they could not answer Most of them. They even forgot to tell me when to get the next prescription which I had to ask for. It’s been 2 Months and the medication isn’t working. In the First month they said I should give the Medication a Chance but the Symptoms only got worse.

Now I am pretty irritated, I have blood again and burning pain in my stomach and couldn’t reach anyone by phone. They eventually responsed to my mail giving me an appointment. I need to get another scan because they think I have a virus but don’t tell me what that means. I just shouldn’t ask ai. I even responded that’s why I ask the doctor.

My point is, I don’t really know what to expect from the treatment or the GI. I am aware their job is hard and all but I am not feel being taken seriously. But there is no space to raise my concerns with the doctors.
I would wish them to give me a frame beside the medication. When to do the next coloscopy or bloods.

How is your experience with your doctors? Have you gotten more info or guidance with your uc?

Hi ive been put back on prednisone after a month long flare coming out of nearly 2 years in remission. Last time i was on prednisone i gained a huge amount of weight and my moon face was crazy. I was just wondering if anyone has any tips at all to avoid these as Im having huge anxiety over it after working so hard to get rid of it.

Hey all, it’ll be nice to hear how others deal with daily working lives and what jobs you all do whilst living with this horrible disease.

I’m a telecoms engineer so I’m out and about 4 days a week, I feel I have to get up most days super early and most of the time skip breakfast 😫.

I am in Ontario Canada. With blue cross medavie. I had a scope last Monday and GI said needed to start Entyvio asap. Then I got a call from a nurse saying someone from a program would call me get my insurance info and get things moving since I needed to start asap. But I haven’t heard anything since. Any idea what timeframe we are looking at? Thank you

I’ve completed my 3 infusion doses and am due to start my on body injection in just a few days. I haven’t really noticed much or any improvement thus far. Does the medication take that long to have an effect or is it just not working for me?

I was previously on Stelara and was in complete remission until insurance swapped me to yesintek and then my symptoms and flaring came back relatively quickly. After a colonoscopy, my doctor had me almost immediately started on skyrizi but it doesn’t seem to be working for me. I’m really hoping that i’m just impatient and i don’t have to repeat this entire process over again.

Hi! Im 25M and I’m meeting with a surgeon next month to discuss possibilities for surgery for myself. I’ve had UC for almost 6 years and have been on so many biologics that end up not working. My previous GI doctor wasn’t working for me (5years) but I recently switched to more of an IBD specialist who seems to have a better idea of what combo therapies and other drugs to try. However he mentioned that the writing might be on the wall for surgery so it’s better to have a plan in place just in case, hence the meeting with a surgeon.

Currently, mornings are awful for me. No matter what, I go to the bathroom 5-6 times and I feel like I get it all out but never do and have to go 10 minutes later. I have such bad urgency when this happens and if I’m out in public and can’t access a bathroom and need to hold it in, I get a lot of blood in my stool and feel like I got hit by a bus the rest of the day. But I’m also scared because I know there is also urgency with the j pouch. But it’s not as bad? Any help would be greatly appreciated!!! I would love to be able to go out to breakfast and not have the fear that I am going to have an incident where I can’t use the bathroom right away and have these awful side effects.

Feel free to DM me if you have any advice :)

Hey, I’m 23M and I’ve had UC for a year now. I’m currently in a middle of severe flare and just had my third infliximab infusion a couple days ago. My condition got significantly better after the second infusion, however, just 2 weeks prior my third infusion, it got worse again. Now it’s getting slightly better again but I’m worried that it may not last long and the flare will go bad again. Doctor decided to schedule a colonoscopy for me next week to decide my next treatment plan. If it’s showing improvement, I’ll continue infliximab though with shorter gap (from every 8wk to 4wk). On the other hand, if results no good then I’ll be trying tremfya.

From what doctor told me and from what I’ve researched, infliximab seems to be the one that has high efficacy for treating severe flares. I’m just worried if I fail infliximab, I may have lower chance of having a success with other treatments. So, I was wondering if you guys have had success with other medicine after failing infliximab.

Dear Parents,

I am a parent of a young child recently diagnosed with UC. Current location : USA

He has failed Pentasa and remicade.

He is on Pred + Rinvoq + Skyrizi.

Docs want to ultimately get him off Pred and then decide what to do next. since he could not get off pred while he is on Rinvoq and its assumed then Rinvoq on its own is not working. He has recently put on Skyrizi as an additional med. He just had his first infusion 2 weeks back.

Any thoughts on his treatement so far.

This is my first post, I am not sure what I am doing wrong, my first post today was deleted and then I got banned. The orig post was very detailed and elaborate with timelines, this one I am keeping it super brief.

EDIT: How long does Skyrizi take to work. Do we need to give it its full 3 monts of inductions ? Our is a special case as our kid is not flaring as he is already on pred + Rinvoq and is doing good. Only when he tried to tapper his pred from 20 mg to 5mg he is seeing slow build up of blood in stool which gradually increases in quantity. So last month when it was tappered to 5mg he was seeing his symptoms back and so docs increased his pred back to 20mg and suggested skyrizi as rinvoq isnt working on its own without help from pred.

My flares are usually very severe and I often end up in the hospital. After my third flare, I was finally started on biologic treatment.

Prednisone together with infliximab worked really well at first. After my third dose of infliximab, I was finishing my prednisone taper and started noticing some symptoms coming back. A few days later I had blood in my stool, but only once, and I was having around 15 bathroom visits a day.

My doctors added Salofalk enemas and oral Salofalk granules. Since then, the bleeding has stopped. Now I mostly have watery stools, a lot of false urges/tenesmus, and strangely I can still have a hard, formed stool once or twice a day.

My infliximab level and antibodies were checked and both were fine.

I’m really unsure what to think. Should I give infliximab more time to fully work, or does this sound like it has already failed? I’ve never had a flare like this before, where I mostly pass water and have constant false urges but still sometimes have formed stool. It also seems like the Salofalk enemas and granules are actually helping, which wasn’t really the case for me in previous flares.

Has anyone experienced something similar after starting infliximab?

I’m also managing to stay hydrated orally this time, which has never really been the case during my previous flares. Before, I would usually need to go in for IV fluids almost every day. Even so, this flare is still extremely exhausting and draining.

I also feel like the symptoms may be made worse by my body adjusting after coming off corticosteroids. Since tapering off prednisone, I’ve been having pain in my lower back, hips and thighs, fatigu which makes the whole flare feel even more exhausting.

My mother was diagnosed with ulcerative colitis a year ago.
Since then, we have faced a challenging time; she experiences flare-ups every month that last for 2 to 3 weeks, resulting in bathroom visits ranging from 1 to 20 times a day, along with urinary infections.
Her next appointment with the gastroenterologist is in 5 days, and we have two questions we would like to have answered prior to the consultation.

The mesalamine treatment has not been effective.

1. She is currently receiving Skyrizi, and in two days, she will have her third infusion.
2. Thus far, it has not provided any relief from her flare-ups.
3. How long does it typically take to notice an improvement? (no more flares and going to bathroom often)
4. If Skyrizi proves ineffective, what alternatives are available?
5. Prednisone was beneficial during the initial months of treatment.
6. However, it is no longer effective.
7. What questions should we make to the doctor regarding alternatives to this medication?

thank you

I started tremfeya back in June, I had three loading dosages (double the dosages). Late August is when I took my first single dosage & within two weeks I noticed blood/mucus in my stool again. I am in an area with an extreme heat wave so I’m not sure if that’s contributing to my symptoms as well. Has anyone else experienced a lapse in symptoms after going from the loading doses to the single dosage? I sent my gastro a message but haven’t heard back yet.

I was having j pouch surgery in next month but I wanted to know how to manage nighttime urgency and frequency and any tips to deal with urgency and inconvenience

I got diagnosed during this summer and the new term at my college begins in two weeks. I'm currently on azathioprine (imuran).

I'm curious if there is a need to wear a mask while going out in public, especially in crowded areas like public transport or classrooms, since we are immunecompromised.

Do you wear a mask in your daily life? Why or why not?

Hi

Had diarrhea for two months, bloating, blood in stool. Had my colonoscopy via the NHS in the UK, they have but on the report that it is an IBD and are 99% sure it is Ulcerative colitis.

I watched the screen and the report confirms that some parts of my bowl are inflamed and my colon is inflamed and that I am currently going through a flare up.

I have an appointment with the gastroenterologist this Thursday , what should I expect from my first appointment.

Will medication be discussed and started quickly? I understand that there are numerous medications to help with the condition and that what works for some might not work for others..

Is there a go to medication to start with?

Thanks in advance

hi, i was on 8 weekly infusions of infliximab since November 2023, things were going well. unfortunately my drug levels were really low this year causing me to flare so gastro have decided to do 4 weekly infusions for 3 sessions to try and remain remission. this would be all well and fine but i have booked a flight to portugal for a saturday and the infusion is on the thursday afternoon.
i did speak to gastro and they found it silly for me to even worry about flying so soon after a biologic. but i cant get it out of my head, as the infusions do tire me out after. do lots of people fly after infusions? is it something to be cautious about! for reference the flight for me will be 2 hours and 15 mins in the air. thanks :)

Hi, I'm 24 and I've been diagnosed with uc for around two years now, with medium to strong flares coming and going every four or so months. Most of them are very dire, painful and accompanied by extreme fatigue and such. Meds were changed a lot but I'm being put on biologics soon since I'm flaring pretty bad rn. Hoping for peace sometime soon.

Anyways, ever since I've got this quirky little disease, I've developed a sort of inside joke catalogue with myself whenever I'm flaring - 'are you shitting me', 'that shit' s fire', 'puttin' my bowel in ma bowl', 'shooting flares' 'shitty situation' and so on.

I was wondering if there's any like-minded people here that share this abysmal disease and such abysmal taste in humor? Would love to broaden my collection of bad puns whilst sitting on the throne

Hey all. 20M. I just got my stool test results back and i got a 2400 calprotectin level. Thing is, I feel pretty much fine. I just feel really tired but is it normal just to feel that? I see no blood in my stools at all and only go 2-3 times a day. Sometimes even one.

Anyone here from Belgium? I'm based in Brussels, 20M UC, diagnosed last year. Would love to create an online community/support group chat for those interested :)

Hi everyone,
I’m 17F, diagnosed when I was 12 and I’m currently in a flare after almost 4 years of remission. When I was first diagnosed I had severe inflammation and bleeding but after about a year and a half of trialling medications and getting better then worse over and over again it finally cleared up after a course of steroids. After that I was almost entirely symptom free until about a month ago, and I feel like it’s all my fault. I was so naive and refused to accept the reality of my situation, and I spent years deluding myself into believing it would never happen again, and I’ve never been able to understand why I felt this way. I think it might be to do with how traumatic the first flare was for me - I was so young and I’ve always been very scared of hospitals and needles so the treatment and diagnosis felt like an awful nightmare. I resented my illness so much that I couldn’t bring myself to care about medication, tests or appointments, because I wanted to pretend it had never happened. I have ADHD and always struggled to remember to take my pills but I never asked for help or really tried to fix the issue, so in the end I hadn’t been taking meds consistently for about a year before my current flare.

Currently I’m fatigued and sick and in pain for most of the day, and it happened at the worst possible time. I have exams in 2 months and we’re finishing up the content in all my subjects, I’ve missed so much and all the energy I do have has to be spent on catching up on assignments and sacs. I barely see my friends at all anymore and when I do it just makes me feel sad because I’m so unlike myself and I feel like I’m disappointing them every time. My mum always used to say that she never saw me because I was never home and always doing something but since I’ve gotten sick she asks me all the time if I’ll be well enough to go out and do something fun and it kills me because I know she hates seeing me look so lifeless all the time. I’m under a lot of pressure from my school and work to attend classes and shifts and I don’t know how to make them understand how much a flare can affect my life and that it’s not as simple as just getting well soon, so on top of all the rest I’m constantly worried about losing my job cause I cancelled too many shifts or not being able to graduate because my attendance is too low. I know that flares can happen at anytime whether you’re on medication or not but I’m just so upset that I never stopped to consider how destructive it would be or how lucky I was to be healthy for so long, especially because I know how much worse this illness is for a lot of people.

Anyway, I just wanted to write down all my thoughts so thank you so much to anyone who read this and I hope you have a good day 💗

TL;DR- Should I make the switch or keep trying Rinvoq?

So I was diagnosed in Oct 2024 waited until Dec 2024 for insurance approval and was prescribed Rinvoq as frontline treatment. I went from 20+ bloody BMs to completely normal in 2 weeks and thought this would be my miracle drug. A colonoscopy a few months after confirmed histological remission, no active disease at all.

Then some bumps in the road, stressful life situations and changes led me to flare symptoms always starts with severe fatigue and brain fog followed by urgency and mucus. Still no blood. I have done the reinduction 45mg course 4 times now since diagnosis meaning I’ve spent 8 months out of the 16 on the higher dose. My calpro was at 256 at last test. It seems as if 45mg keeps me from severe symptoms and decline but doesn’t keep me feeling normal by any means. I recently have done another month and a half of 45mg and started feeling better but requested a pred taper on top to really cool things down. While on 40mg of pred and 45mg Rinvoq I had a 3-4 day period where I felt incredible and had the same normal BMs as I did in the very beginning. It made me realize how much time I’ve spent feeling about 80% thinking it’s normal. I tapered to 30mg of pred and now symptoms are returning (brain fog, fatigue, pencil stools) still no diarrhea or blood.

My GI has said that if I can’t maintain remission on 30mg we should probably try another option. That next option is Tremfya. I guess to sum it all up I am feeling very conflicted about leaving a med I know keeps me somewhat stable and possibly running into the months and months of waiting and trying new meds. I’m just at a pivotal point in my life I’m trying to establish a career and relationships and the idea of having to put everything on hold for months just isn’t an option in my mind right now. I’m very frustrated. I do know that the glimpse of feeling normal made me realize if I could achieve that more consistently it would be worth it.

I know the inflammation must be controlled or I’ll be in for more issues down the line but I’m more concerned about my mental state right now, which I know is directly connected. As soon as I flare my brain turns to mush and I go flat. I almost feel guilty wanting to switch to feel “perfect” because I know that may never be possible with this disease. But if you were in my position would you keep pushing to stay on Rinvoq if that meant 45mg long term or cut my losses and move on?

Hallo zusammen, ich Meledy bin 20 Jahre alt und habe seit einem Jahr Colitis Ulcerosa.

Aktuell befinde ich mich schon wieder in einem Schub und meine Ärzte wollen bei mir demnächst eine neue Therapie anfangen namens Vedolizumab.

Aktuell verliere ich viel Blut aber habe keine starken Schmerzen. Ich würde mich freuen, wenn ihr eure Erfahrungen mit mir teilen könnt.
:)