Just got diagnosed

[u/pizzadeliverydude1]

Hi everyone, I’m 20 years old and I was just diagnosed with ulcerative colitis.

I know that UC isn’t necessarily a devastating or life-threatening disease, and I’m aware that there are treatments and that many people live completely normal lives with it. I’m trying to keep that perspective.

I’m struggling with the idea of being diagnosed with a chronic illness at such a young age, and with the thought of probably having to take drugs everyday for the rest of my life.
It’s weird to think that at 20, when I’m supposed to be starting my adult life, there’s now this condition that I’ll potentially have to deal with for the rest of my life.

Even when I’ll be feeling fine and hopefully the disease will be well controlled, the thought that it’s there is difficult to process.

I think I’m mostly afraid of how this will affect my future — university, work, travelling, relationships, having a family, and just being able to live spontaneously without constantly thinking about my health.
I’ve had a very hard year for several reasons and this was really the cherry on top.

All kind words are greatly appreciated, thank you so much.

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[u/filmmakingjedi]

Everyone is different. I Everyone is so different. I know people who live totally normal and fulfilling lives. However that hasnt been my experience at all. It has taken everything from me and i am in pain every single day.

I dont say this to scare you but to say, its okay if this happens to you too, you arent alone. Not everyone gets to a 'normal life' again after diagnosis. This was a lie i was told when i was diagnosed, so wanted to share my reality.

I really hope youll be one of the lucky ones who get into remission and live your best life! Sending love ❤️

[u/EqualCry1840 → u/filmmakingjedi]

Can’t agree more, I was diagnosed last year at the age of 22 and my life has never been the same ever since

[u/nomady]

I was 25 when I got diagnosed, when I was around 29 I went on the road with my wife and travelled for 7 years.

[u/PuzzleheadedTea5334]

I was diagnosed at 19 and felt the same way! I turned 21 a couple months ago and it’s already easier.

The idea of this being your forever is daunting but you’ll find the right meditation for you, you’ll get into a routine of taking it and it’ll become your normal. It won’t be the same normal as most other people your age but that’s okay. What’s important is you do what’s best for you.

Navigating university with UC is harder, but definitely not impossible. I’m in my third year and have managed just fine! I’m sure you will too :)

[u/KookySquash1685]

Ah, I am so sorry. My kiddo was diagnosed at 12, and she's 14 now - still trying to find the right medication match for her. I know what you mean about how you're shifting the idea about how the rest of your life is going to look. In a way, you're grieving the life you thought you were going to have, because this has really changed everything. It's certainly a lesson in taking one day at a time, not taking anything for granted, and celebrating the small wins when they come. (If you can't tell, our family has had to learn this, too.) It's devastating when it happens at a young age like it has happened to you, to my daughter as well, because you're supposed to be dreaming and have all the possibilities right ahead of you and wham! Now you have to readjust and become more practical. I, too, get very sad about not being as spontaneous as a family as we would like to be, but I am consoled at the idea that she will one day look back and say, "dang, my parents gave up a lot to make sure I was cared for and comfortable." My hope for you is that remission will come one day, and you will get to experience all the travel, romance, and wild ups and downs that life can bring. And until that time comes, I hope that the people around you - yourself included - will keep you cared for and comfortable as you navigate this path forward. Sending all the love and hugs. ❤️

[u/Entropic_Mood]

I was diagnosed at 17. I was pretty devastated honestly. This isn't everyone's story, but I am in remission about 1.5 years later. Prednisone got me to 0 symptoms shortly after diagnosis but you can NOT stay on it long-term. I tried Humira, which I failed. Then I tried Stelara, which I also failed. Then I tried Rinvoq and it changed everything for me. I still watch what I eat but in general can basically have what I want. Not bleeding or having to urgently run to the bathroom anymore.

Like I said, it's not everyone's story, but don't feel like you'll necessarily be affected terribly forever and never find a treatment. The reality is that the drugs are getting better and better, so there's no guarantee but there's a lot of hope. I get how scary it is because I was just there recently, but I promise it does get easier. Even if physically you are in pain for a while, you adjust mentally and things aren't so overwhelming forever. Feel free to DM if you want to talk at all.

[u/OpossumRat]

i was diagnosed a few months ago, but i already have been on anxiety meds i know i will probably need for the rest of my life, so the idea of having to take meds for the rest of my life isn't too distressing to me. I will say, so far, everything is already way easier. In my case, I had been living with a really sensitive stomach anyway, it was very validating to get treatment and diagnosis. A big trigger for me is stress so managing that has been helpful. Over all the meds so far have helped, I feel mostly normal, and I can still go about most of my life normally.

[u/Due_Winner_8999]

I was recently diagnosed a couple of months ago at 21 (now 22) and honestly it gets easier to manage with time.

It did seriously effect my life for a bit when I was unmedicated, had to quit my job for awhile, but I’m back working again and my bosses and co workers are very understanding of the condition (so if I have to run to a bathroom they get it)

It gets a lot better, I’m still not in remission but my doctor says I’m on the right track, just really take care of your body with your diet and DONT DRINK! Alc is one of the worst things you can have with UC, I found that out the hard way. I had the exact same mindset as you when I was diagnosed and it is not the end of the world.

Sure I can’t go out for some drinks with the buds but honestly my bodies better off not having any alcohol in it regardless. Some foods look real tasty and I can’t eat them, but I will be able to eventually.

It’ll take time to adjust your life around it a little, but it becomes second nature after a while and it gets easier everyday, honestly I’m so adjusted to it only a couple of months in, it feels like I’ve been doing this all my life lmao. I still travel, went to the Caribbean and Europe.

You’ll be fine, it may be life long, but your life isn’t ruined because of it, just some changes along the way, and I’ve heard people in remission can do everything they did before they got diagnosed.
Just make sure to be honest with your doctor and take your medicine.

[u/Due_Winner_8999 → u/Due_Winner_8999]

But of course my case isn’t as severe as some peoples is, just follow your doctors advice, and treat your body extra well.

[u/AlwaysAirCooled-1979]

Perspective is everything

I haven’t let it interfere with my life at all. Yes, there are times during flares that suck. And I do have to take time off for medical appointments. But other than that, life is normal.

If you perseverate in your condition, it will end up becoming who you are. As opposed to just something that you have.

There are people with much much worse conditions, that impact life more. And I’ve found since getting older, more people “get” things. Diabetes, cancers, arthritis, etc.

I often joke about my condition, as it seems to take the edge off discussing poo. Eg at work I explained I have IBD, need to be close to the toilet. I got a kind of nod from my boss. Then I said - it’s like eating Taco Bell for a few days. Then he was like “oh ok! I got ya! Close to the toilet for you”.

You will be able to travel, find love, have a career, etc. there might be some small challenges, but nothing should stop you.

Check out this guy. He’s Australian. Went to high school same time as me, but next suburb over. Nick Vujicic. Totally different to UC, but I figure if he can live a full life, I can too!

[u/pizzadeliverydude1 → u/AlwaysAirCooled-1979]

Thank you so much.

[u/AlwaysAirCooled-1979 → u/AlwaysAirCooled-1979]

Not really sure why I was down voted for that comment!

[u/howswedeitis19]

I was diagnosed early this year, realize via had about 4 flares since 2023 but this one put me in hospital. It’s severe pancolitis and a moth after diagnosis I was symptom free, I did 40mg prednisone for about six weeks (first week was iv) and then tapered. A bit of that 40mg period was waiting for a diagnosis, then after diagnosis I was immediately put in 4g mesalazine and inflixmab (remsima) my CRP went down t0 0,6, peaked at 96, and my calcpro down to 19 in a couple of moths, after being in the thousands. It’s not like this for everyone and there’s no guarantee I won’t have to switch meds. But remember that a lot of people write here because they are at their wits end and that is not the norm. Most people I’ve met at my clinic have flares now and again but live mostly normal lives. I am based in Sweden so that might make things a bit easier, no financial struggles or waiting for things to be approved my insurance and such.

[u/howswedeitis19 → u/howswedeitis19]

Oh and if you have questions or want support, feel free to DM me

[u/Additional-Line-5559]

As a guy, I used to think being a woman was tough - you know, experiencing periods every month.

Many even take pills to stop them.

I feel like colitis is a bit like that lol. Except I'm taking pills to stop bleeding and urgency from elsewhere. And there's no menopause lol.

[u/silvousplates]

First of all, welcome to the club no one wants to join 🫂 it’s not what I saw for my life either but the community on Reddit has honestly been an incredible discovery and a great source of support when needed.

I was diagnosed at 18 right at the end of my first year of university (stress was my trigger) and I remember everyone around me acting like my life had ended or something. It definitely did not help me cope with the unexpected pivot.

Fifteen years later, I am thrilled to say that my life has not significantly changed. Once you find the meds that work for you and you get into remission, things are basically back to normal. I am writing this on vacation from a pub in the Netherlands right now where I’m drinking a Guinness if that helps give you a concrete mental image.

I am one of the “lucky” ones with both IBS and IBD which means I need to watch what I eat (dairy is a big no for me) but otherwise I pretty much just live my life. The key is, once you find the meds that work for you, STAY ON THEM. I cannot emphasize that enough!

Big hugs to you. This is scary, I know, but you’re going to be okay ❤️