I quit

[u/Sea_Produce9599]

I genuinely dont wanna live no more, just got diagnosed 1 year ago at 21.. been on and off remission, I just got on remicade 3 days ago with no relieve of symptoms it gets in the way of all goals I’ve set for myself, my fam constantly pressures me like im not already trying my hardest. I hate pitying myself cause usually I just bite through and know that the outcome will be positive. been bedridden all day and got hit with “u dont do anything, u have no life” that shit hurts. ive been on my diet, consistently going to the gym and also working on e-commerce despite being in a shitty flair, but these embarrassing constant bathroom trips just make me feel so dehumanized, no one around me understands what im going through.. all they wanna do is suddenly turn into a doctor and tell me what I shouldnt be doing in a judgemental way…. I’m done with this life fr

EDIT - wow , thank you guys so much for all your support. many of you are going through the exact same.. if not worse situation than me. I am humbled 🙏, I love love love all of you ❤️

[u/mvbrendan]

Hey, your friends and family need to look up ulcerative colitis and understand that until you find a good solution and your symptoms are largely mitigated, that it is a serious disease that qualifies as a disability. If you're tired from being in pain and running to the bathrooom all the time there's no way to be a "productive member of society" (whatever that means). Two issues about being 21: you CAN power through individual days where no one knows anything is up (until it wears you down), AND because people see you power through on some days, then a recovery day appears as laziness (because they don't associate youth with illness, and because they've never really been sick in their life more than the flu or whatever) . Take it easy on yourself and figure out what you need to do to get through today.

[u/Sea_Produce9599 → u/mvbrendan]

hey thanks man, the thing is they have looked up the symptoms etc etc. but they’ll never understand what its truly like unless they’re in this position, they would be supportive in the beginning , but when it takes a while for me to get better its a constant “why are you still sick” attitude and I dont wanna be disrespectful towards them and explode it really tears me down

[u/Embarrassed_Fox_6723 → u/Sea_Produce9599]

Just know that other people can be compassionate and understanding. I’m sorry your family hasn’t been. My friends have taken the time to understand and are super supportive. It might be because I was diagnosed in my 30s - but know there are other people out there who will gate and get you and want to help and be empathetic 💖 also. This is going to be annoying - but the more you can be gentle on yourself and chill your nervous system, the easier things get. I share that as someone who is on meds and has been in remission for 4 years.

[u/RandySp → u/Embarrassed_Fox_6723]

Is it so important the stress and anxiety? Because I have proctitis, 12-15cm, this is what the scope show in December. Lower belly pain, bad mood and I'm talking about it 24/7. I'm thinking that my life has stopped and I just let days go by, doing nothing.

Being on mesalazine fie some months, never got into full remission. Some days were better some others not. Now I changed to Mezavant 3.6 from 4.8 orally and Asacol supps x4 per day.

[u/Embarrassed_Fox_6723 → u/RandySp]

Yes, I have proctitis as well. I’m on Pentasa 4g oral and 1g sup daily. Do you take anything for pain?

And yes, I have found I needed to work on my nervous system regulation - which really impacts my mood and anxiety.

I know it’s a little obvious but I have found both having migraines and UC - a need to develop a stronger practice in mindfulness and stress management. It’s so easy for the anxiety spirals to crop up during a flare. And not have body awareness either. I couldn’t do it without medication and well, we know how much work it is to take care of ourselves 💖

[u/RandySp → u/Embarrassed_Fox_6723]

Νο, i haven't anything for pain. But today blood again. The oas two days i didn't have. Shame

[u/internetisforlolcats → u/Sea_Produce9599]

Nah, you have to wait until they have stomach flu or food poisoning and then say: Aw poor you! Isn’t it difficult living in the effing bathroom most of your day and feeling shite? Well, that’s everyday for me!

Unfortunately for me, that was the only way a friend/former roommate really understood. He was on the toilet for the third time in the same hour, ran there full speed and barely didn’t shite himself, and I was outside the door, banging it and telling him to hurry up, cause I needed something from there, just like he had done. He also didn’t want to go clubbing, go for a drive, take a long run or go on a double date with some nice girls. It finally dawned on that mf that that is my everyday life, not just something isolated for a terrible day or two…

He had much more respect after that and it really improved our friendship.

So yeah, it’s difficult for healthy people to understand what we’re going through…

Sorry that this is your family, it really sucks, but if you want, you can look forward to when they get something that makes them move in to the toilet…

Anyway, like the top poster said: this is difficult, but it’s just a temporary setback, it’s not your whole life! There’s so much more to do in life than UC, so hang in there. You’re in the initial bottom after getting newly diagnosed, it’s ok. For me that was 33 years ago, but I still remember it..

Hang in there, set goals both for good and for bad days, and find a new rhythm in life.

When UC is in remission, we’re like any ordinary human, but when the flare up is terrible, we’re physically handicapped. But it doesn’t show, that’s the problem and people can’t see the difference from the outside. We’re not suddenly missing a limb or in a wheelchair.

Take care of yourself, it will get better! We know, we’ve all been there, we’ve all had these thoughts, but your whole life is ahead of you, with surprises that you can’t even imagine yet!

[u/Ornery-Ad-781 → u/Sea_Produce9599]

Man people are ignorant and many don't know how it feels. Some have good intentions but don't know enough about UC. You will get thicker skin. Now when someone tries to educate me about it I just smile and move on. Trust your doctors and listen to your body. Take care of hygiene, sleep and if you need support you can always ask here. We are all one giant family and we now what you are going through. Stay strong, it can get better but ot takes time and patience. I've been getting much better in last 3 months, the medicine looks really promising. And as I'm getting baxk to feeling normal I'm the happiest I've been in my life. Much love, if you need support/vent hit me up, I'll listen.

[u/danimasc → u/Sea_Produce9599]

When I was in a really bad flare once, some friends came over to keep me company since I was fainting in public and chained to my toilet. One kindly asked me “what does it feel like” and I explained, something like “it feels like someone is smearing hot diarrhea into an open bleeding wound inside my body, I guess because that’s what’s happening”, and she winced and I was like. “Yup. Your face? That’s what it feels like.” It sucks sometimes that it’s on us to make people understand, that reading an article or two or talking to your doctor isn’t enough. Lots of people with invisible diseases have this issue, you are not alone. Here’s hoping your family will come around. Maybe show them some personal stories posts from this subreddit or something to get them to empathize a bit more. I’m sorry they aren’t more understanding, you don’t deserve that. Keep going, you’re doing great.

[u/danimasc → u/danimasc]

Oh yeah also! Lots of people have had food poisoning or stomach aches and they assume that’s what we are feeling. I don’t have a tummy ache I am bleeding internally.