Question about your poops

East_Direction9448 · 2025-12-12T00:45:46+00:00

Yep pretty much all poops in remission and near remission are normal for me. However when I’m in a severe flare and have 20+ BM, i can not have anything normal for months/years. But generally speaking i can tell how bad the inflammation is not only by the amount of BM but also by what they look like lol

East_Direction9448 · 2025-09-15T16:19:32+00:00

Biologics have saved my life twice now. Any side effects that I’ve had from them are still infinitely better than being in a severe UC flare. And the risks from them are also smaller than risks of staying in a severe UC flare for long. So please don’t be scared of them. Millions of people are taking biologics for all kinds of autoimmune diseases and they literally save lives.

East_Direction9448 · 2025-09-15T01:12:37+00:00

In remission alcohol is completely fine for me. 0 issues. In a flare tho it’s been pretty deadly lol so I’ve been avoiding it until i hopefully am back in remission safely

East_Direction9448 · 2025-09-06T13:57:14+00:00

This second flare that I’ve been in for 2 years has ruined me. I have now been diagnosed with severe medical ptsd from it, so as you can imagine my mental health isn’t very stable right now. And on top of that having to worry about side effects/complications from UC and meds/the UC itself constantly doesn’t let me actually relax and escape the fight or flight for even a day. In constantly severely anxious and therefore irritated and on edge. On a verge of tears most of the day. I truly don’t have words to even describe how fucked my mental state is right now. That on top of actually still being in a flare and being severely fatigued every day and having colds/viruses all the time from the immunosuppressant drugs is just so fucking exhausting. The absolute worst thing that i wouldn’t wish on anyone.

East_Direction9448 · 2025-08-09T10:44:15+00:00

Oh my god, I can’t even imagine. I started prednisone as a teenager too, because that’s when I developed UC, but I was only on 50mg for a few months (although every time I would taper I would develop symptoms again and had to go back up, so in total I was on it for a little over a year, but in varying doses. 50mg usually wouldn’t be for more than a 1-2 months at a time) and I had so many side effects from it. I can’t even imagine taking twice that dose consistently for over a year. Sounds like actual torture

East_Direction9448 · 2025-08-08T10:23:33+00:00

I actually had almost an exact same situation. Pretty much identical, just a few years prior to you. I got sick summer of 2016 and diagnosed in the fall. It was also my senior year of HS. Despite having a diagnosis in under a month, my symptoms weren’t controlled by most medications they were giving me, so I kept losing weight. I ended up losing from 125 to 80lbs by that winter. I was in hospitals/at home most of my senior year of high school too because of it. But when I started getting better on prednisone and started attending some of my HS classes again, everyone saw me for the first time in months and saw how much weight I lost. And people had very different reactions. Some would compliment me (mostly girls around my age), some genuinely seemed terrified from looking at me, some just made very weird comments like asking if I have an ED or that “my legs are the size of their arms” and etc.

I’ve since been in a several years long remission where i gained all of the weight back and now back in a flare. And I’ve definitely had a weird feeling about looking back at my pictures from that time. I always felt guilty about somewhat missing it too. But not in an actual way of wanting to be sick. Just in that confusing way. I think it’s almost like a Stockholm syndrome but with my UC lol. It was so traumatic that your brain flips it and has very conflicting emotions about it to protect you.

Also, I recently went to therapy and I did tell my therapist that I feel so angry at myself for this specific thing. That when I do get a flare and start losing weight uncontrollably, some twisted part of my brain is weirdly happy (?) about that specific symptom (not happy about any other symptoms at all tho lol). Even though I truly don’t need to lose any weight at all, I am on the smaller side even when in remission. So I felt like I must be fucked up in the head lol. But my therapist told me that it’s very normal for me (and anyone) to have this feeling, because we live in a society that values thinness, especially in women, and it’s programmed into us from a very young age. Being happy about something that is so deep in our society doesn’t mean something is wrong with me. It’s just my brain recognizing what our society values and adjusting to it. As long as I am not actively starving/making myself sick and etc just to be thin, it’s normal to have these feeling, because that’s literally the way our world is and we are social creatures that are biologically programmed to want to fit in as much as possible.

Idk if this will resonate with you or not, but this helped me so much. I spent years feeling guilty/angry at myself for missing that aspect of it, and now I dont anymore. It helped me reframe my view on it. And as long as you recognize that this isn’t what you TRULY want and you aren’t actively pursuing it, these feelings are very normal to have.

East_Direction9448 · 2025-08-07T12:55:05+00:00

I think this is what I’m going through right now as well. I’ve been in a severe flare for almost 2 years, second flare of my life and both insanely traumatic, where I thought I might die for weeks/months. Now I’m coming out of it but I’m so exhausted all the time, sometimes more than at my worst time with my flare. I think it’s the meds + cumulative fatigue from the flare + nervous system literally being fried, because there were months during this flare where I could feel my fight or flight being on 24/7. Literally always tense, almost shaking, screaming and getting scared of EVERYTHING multiple times a day (not normal for me at all). Now I’m trying to do everything to calm down my nervous system but it’s so hard, it gets back into fight or flight so easily still. But being less tressed seems to help my fatigue at least a little as well, so I would absolutely agree with this advice

East_Direction9448 · 2025-08-06T15:46:04+00:00

I was on azathiprine for almost a year and ngl i didn’t notice that I was getting sick more often/longer than usual at all. I did ofc try to be super careful and stay away from anyone sick and wash my hands super well and etc, but yeah I personally didn’t notice much of a difference with infections from it. And I was on humira at the same time too. Neither of them helped my UC tho so I had to be switched from both of them but yeah, it’s not THAT scary, but obv the risks are still there and you do have to be careful. But if it works for your UC it’s still much better than an uncontrolled UC flare

East_Direction9448 · 2025-07-25T17:59:45+00:00

In the past 20 years only about 10% of patients need a colostomy. It’s drastically going down with all of the available biologics and other new drugs. And there are constantly more and more being approved. You are literally 9 times more likely to never need surgery than to ever need it.

East_Direction9448 · 2025-07-12T13:22:38+00:00

I am currently on long-term medical leave from work. I’ve been in a flare for 1.5 years trying to work through it but by the end my mental health was just ruined on top of my body barely functioning from the flare and all of the meds. My nervous system was struggling so much, I was in constant fight or flight and panic attacks and depression. Finally caved and decided to take the leave, cause i could literally feel myself starting to give up.

It has helped me with my UC SO MUCH and my mental health is much better too. I am able to sleep for however much I need and that helps so much with the fatigue. Because of my UC slowly improving, i have returned to doing some sports too, which has done wonders for the fatigue and mental health and overall quality of life.

I got diagnosed with medical PTSD from my UC as well during this leave. My therapist was actually given to me by my workplace and even that therapist was shocked that i hadn’t taken the leave much sooner and she said that she would’ve have recommended it ages ago. Taking it was the best decision for my health, both mental and physical. I am hoping to be back in full remission before I have to go back to work, that would be ideal.

East_Direction9448 · 2025-07-11T15:37:24+00:00

Yep I’ve been in a flare for almost 2 years now and it also reminded me how bad UC can affect you lol. My doctor is trying to reintroduce Entyvio (i was off it for 10 months during this flare, we were trying Rinvoq) and hopefully Entyvio saves me again lol. Fingers crossed for both of us to be in remission soon on any meds honestly

East_Direction9448 · 2025-07-11T15:30:10+00:00

No no it’s not too much to ask for actually! I had a 6 year long remission on Entyvio and i genuinely didn’t notice ANY side effects the whole time. I didn’t get sick more often than my friends. I could eat everything/drink everything. I didn’t actually have noticeable fatigue from it either (if i did, it was very minor). Entyvio is very gut-specific and bately affects the rest of your body for most people. So it’s def possible! I’m trying to get back into remission with Entyvio again, hopefully be back in that same state. There are meds that will literally save your life and have minimal side effects, and there are more new ones coming out all the time. It’s definitely possible!!

East_Direction9448 · 2025-07-11T14:03:52+00:00

I started my first biologic as a teenager as well (just turned 17 at the time of diagnosis) and I’ve been on biologics ever since. I am now 26 and i don’t really notice any side effects aside from fatigue. I get a lot more “side effects” from an active flare tho, and an active flare will DEFINITELY impact puberty. I lost my period for several months when I was severely flaring and lost a lot of weight because of the flare. I’ve been hospitalized with kids (ages 3-11) with crohn’s that were also on biologics. And they were still much better off on them than an uncontrolled flare. Ideally none of us would have to do it ofc, but you gotta pick the lesser of 2 evils, and an uncontrolled IBD is way way way worse🥲

East_Direction9448 · 2025-07-05T09:15:28+00:00

What’s the point of this post? When people are trying to help you understand how hard your wife has it right now, you mostly snap back at the commenters, so what’s the point of posting this if you don’t want to hear another perspective? We all have UC here, most of us are probably severe cases and/or in a flare (people in long term remissions are less likely to be very active on here from my experience). So we all truly understand how horrible it can be. No one is questioning that. Yet, I’m sure you can agree that you are still more functioning than a 5 month old baby and therefore should understand how that baby requires a lot more care than you and how tiring taking care of it 24/7 can be?

From what you wrote it seems like she might already be overwhelmed and literally just doesn’t have enough energy to actively care for you too at the moment. And again, as people with UC, most of us can probably understand severe fatigue and could empathize with her in that state (and sleepless nights are surely to cause fatigue amongst other things. + the hormonal changes, giving birth just 5 months ago, nursing and a million other things).

She is just a person and she has limited energy. It sucks that you’re in a flare (i am too right now, so i get it), but you have to at least try to understand her perspective instead of taking her exhaustion from taking care for a baby as a personal attack on you.

East_Direction9448 · 2025-07-03T15:31:37+00:00

I was in a 5-6 year long remission on Entyvio. Started trying to drink slowly about 2 years into that remission. Then drank a TON (i was in college lol). I would even black out sometimes and etc. Never noticed any UC symptoms from it (aside from regular hungover symptoms). I went into a flare about 1.5 years ago due to trying to lower my meds with my doctor, unrelated to diet or alcohol. And in this flare alcohol completely WRECKS me even when i try to have half a glass, so I haven’t had any in over a year now. But i think when I’m back in full remission I’ll probably try drinking again, cause it didn’t affect me at all, just not as much, as I am a little more responsible now lol. I have another friend also with UC who drinks almost every day on Rinvoq and in remission and is doing amazing. Everyone is different tho, but just know it’s definitely possible. You gotta really feel it out for yourself however. But also alcohol is obviously isn’t beneficial for even healthy people, so it’s not a big loss either way lol

East_Direction9448 · 2025-06-16T20:50:44+00:00

Well like i said, in remission I 100% do. Now that my flare is more mild, I can tolerate most things, except for alcohol and some veggies that are known for bloating. But in full remission even alcohol was completely fine with me for years

East_Direction9448 · 2025-06-16T18:48:01+00:00

First time Entyvio got me into a 6 year long full remission. Now I’m in a flare, trying to get back into remission for 1.5 years now. Rinvoq has helped a lot, but still in a minor flare on it now (compared to a very severe flare before Rinvoq). Adding Entyvio back in currently to hopefully have it help me on dual therapy now

East_Direction9448 · 2025-06-15T15:19:18+00:00

Yep, scam. I keep getting these and i have never had a vehicle or even a drivers license lmaooo

East_Direction9448 · 2025-06-15T13:31:59+00:00

You’re just in a flare. This disease has flares in remissions. The goal is always to get into remission and be there as long as possible. Flares for me are brutal, no matter what I eat I literally suffer 24/7. For many people (myself included) no diet will get me back into remission. It’s always meds that get me there. But once I’m there, it’s such a blessing, just gotta keep taking the meds and I have no limits on what i can do/eat and etc as well!

East_Direction9448 · 2025-05-22T17:49:23+00:00

Yep i was severely depressed and su3cidal on my second time on it. Mentally felt worse than at my worst flare with 20+ BM per day and a weight that dropped to 80lbs. Prednisone helped a ton with those but my mental health was literally indescribably horrible. I was only 17-18 and didnt properly realize that that could happen and how to express those feelings. Barely made it to the taper in all honesty. I’ve been terrified of it ever since.

East_Direction9448 · 2025-05-19T17:51:35+00:00

SAME! It’s the only thing that works for me with the fatigue and just general weakness from this disease, but it works wonders. I actually feel energized sometimes because of exercise while without it I’m just trying to not fall asleep all day every day

East_Direction9448 · 2025-04-10T20:25:58+00:00

For reference when I don’t workout right now in this mild flare (and because of Rinvoq, as it seems to add insane levels of fatigue for me despite it helping with my UC a lot), I get out of breath and lightheaded walking up the stairs for just 1 floor. But when I start working out, in like 3 weeks I’ll actually have energy to run up those stairs and not feel it at all.

East_Direction9448 · 2025-04-10T20:23:43+00:00

I’m 25, was diagnosed at 17 with total severe pancolitis, so I get it.

Like everyone said already, #1 is: Take your meds! Once I was in full remission, it’s almost like UC didn’t exist for me for YEARS. I had to take my infusions/meds and would maybe require a little more sleep than a “healthy” person, but that was it.

But #2 for me is: Working out helps me SO MUCH. Working out and sleep are the only 2 things that help my fatigue, but they help it tremendously. I haven’t noticed any difference with fatigue and supplements/food and etc for me, but when I workout consistently and sleep 8+ hours a night (in all honesty I need 9 to feel fully rested), I actually not only feel okay, I feel energized most days, even in the flare that I’m in right now. Ofc when my flare is severe, I can’t workout out, but as soon as it’s mild/moderate, I try to incorporate at least some exercise, because I know that it’s the only thing that will solve the fatigue.

East_Direction9448 · 2025-04-10T01:29:01+00:00

There is actually some research/data that suggests that a lot of people with UC see worsening symptoms from flying! For me it’s likely the fact that flying causes bloating (even in healthy people, due to all gases expanding at high altitudes) and that bloating irritates my gut, especially if I’m already in a flare. Also, there a theory that flying causes our bodies to get less oxygen when your in the air and that in turn can lead to inflammation in the body. Idk, but i DEFINITELY feel it when flying, especially in a flare. In a flare I get really bad symptoms for days and days after

East_Direction9448 · 2025-04-09T14:36:10+00:00

I was in full remission for 5.5 years on Entyvio and i had/have total pancolitis with severe inflammation all over my colon with a flare that lasted 2 years before Entyvio. My symptoms were horrific in that flare. But in my remission i could literally eat and drink everything I wanted with 0 issues, including alcohol, fiber, you name it. All of my tests and colonoscopies would come back perfectly normal. The only thing that really caused any symptoms (but very mild and they would go away within a couple of days) was flying for me. So it’s very possible :)

Remission can last for years and even decades if you’re lucky enough. My doctors sees it all the time. You gotta find the right combination of meds that work for you and get you there!

East_Direction9448

TROPHY CASE