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2y ago

Struggling with Ulcerative Colitis at 16

Hi everyone I have recently been diagnosed with ulcerative colitis at 16. I was having symptoms (bloody diarrhea, fatigue, and pain, waking up 10+ times a night to go to the bathroom, going 10+ times during the day and urgency) for over a month but didn’t think much of it and though that it would eventually go away ( I have other medical issues so I though that maybe it was just that).I eventually told my mom after being embarrassed and scared. We decided to go to the emergency room after not being able to get an appointment with a GI doctor for over a month. I ended up being admitted and was extremely anemic and inflamed. All of my levels were very low resulting in me having to get two blood transfusions and two iron transfusions. I eventually got a colonoscopy and endoscopy while in the hospital which was able to officially diagnose me. I started steroids right after my procedure but they didn’t seem to help much so I got my first dose of remicade. There wasn’t a huge change after the first dose causing me to get a second dose. I ended up staying in the the hospital for 12 days before finally being able to go home. I just got home 4 days ago and I am still struggling with the same symptoms. And on top of this I have missed the last couple weeks of school and I had to take some of my finals in the hospital. I also took my last two test today that I had to go in for. I still feel very fatigue and tired constantly. I have a couple doctors appointment coming up and I also have my third remicade infusion this Friday. I definitely am noticing a difference with the remicade but I definitely want it to work better because I am still having my draining symptoms. I am definitely struggling both mentally and physically during this time but I am hopeful that things will get better. Just wanted to open up to someone because not a lot of people my age talk about this and no one in my family has IBD or colitis. :)

Your answer



1y ago

That’s how I started, and my last option was to remove colon and rectum, it sucks!! It’s been crazy !! Normal life I had to this less than 2 yrs!!


2y ago

hi! this sounds suuuuper similar to how i got diagnosed/first started remicade (i was 16 too! 19 now). it took a lot of trial and error with the remicade for me (a few months of getting it every 2-4 weeks) before it started working but once it did it was soooo helpful. have any doctors talked abt ur diet yet/do you follow a specific diet? if not i would definitely look into that bc it was one of the biggest things for me. i don’t eat gluten or dairy and when i’m in a flare avoid like fruit and vegetable skins, raw veggies in general, nuts, etc (anything like physically rough can make bleeding worse). the diet absolutely sucked at first and still does a lot of the time but it is so worth it. lmk if you have any questions or just want to talk; i know how isolating this can be

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.


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