I feel like no one understands

I've been in my current flare up since August and it's really horrible.

I was on prednisone for a month and after that I was put on that and asacol and after I was doing really good until I stopped taking the preds last week and now I'm feeling horrible. I'm having a normal amount of BMs, but there is blood and my stomach constantly hurts.

I had to come home from school early yesterday because the pain was so bad and my mom didn't believe me... I've home a few times last semester and every time my mom picks me up she gets upset because she thinks I'm lying to leave school early but she doesn't believe that I'm not feeling well, she doesn't understand how bad the pain is. And she always goes on and on about her own problems like my dad snores at night so she can't sleep but when I want to talk about my problems she doesn't listen. Sometimes I really want to tell her her problems aren't a big deal because she doesn't work so she can sleep all day but obviously I can't.

My dad is better about it but he doesn't speak good English and I don't speak his native language so he doesn't understand my disease well and doesn't understand what I'm going through.

I also have a lot of trouble concentrating in school, because I always have to go to bathroom when the teachers teaching and I don't like having to leave all the time in the middle of a lesson and I feel like I would be doing so much better in school in I didn't have UC. My marks really matter this year because I'm going to university next year so it really upsets me. The only person at school who knows about my disease is my programming teacher because he started to notice that something was wrong with me but I don't feel comfortable telling anyone else.

Sometimes I feel like because my disease isn't visible people forget I have it or they underreact to it, trying to get me to eat foods they know upset me, and sometimes I feel very alone. I already had issues before my UC like low self-esteem and social anxiety, but sometimes I really feel like no one understands.

Sorry for the rant, this was just something I needed to get off my chest.

18.

milky, it really does suck when the people around you just don't get UC. that's how it is in my house, too. i definitely agree that it gets annoying when people complain about their stupid crap when your problems are so much worse.

does your mom know about the disease or has she read up on it? does she go to doctor's appointments with you? if you've been flaring for almost 8 months, you'd think she'd realize how terrible and painful it can be.

Milky

You are so right that this disease is invisible and people either don't really understand what it is like for you or they forget or your mom not believing you. Being a teenager makes it more difficult so I hope you can find a support group even if it's one or 2 other people to talk to who are sympathetic.

Do you have a good doctor who can help with the pain? If your doctor is a good one (not always easy to find) have him/her tell your mother the facts of what your UC is like, she'll probably listen to a doctor more than you. And yes talk to a teacher if they are the type of person with empathy.

Don't worry about ranting, we all do it from time to time. This is a good place to do it because we've all been through it and understand what it's like. Glad you came to the forum, hope some of the members your age will connect with you.

We went to the Dean of Students when my son's uc interfered with his schoolwork. Turns out uc is considered a disability and you can get all kinds of breaks on adjusting extensions, mid-terms and finals due to flares or hospital stays. Some colleges and universities have disability advocates who will privately speak to your teachers so that you do not have to tell anyone yourself.

We had one bad professor who gave my son a hard time. I sent him copies of pictures of my son being worked on by a team in the er and a copy of my son in his hospital bed with a feeding tube through his nose. For some strange reason we never had a problem with him again.

I am so sorry your parents cannot relate to what you are going through. Asacol never worked for me. It may be time to try something else. There are a lot of options available. You just have to keep trying until you find what works for you personally.

Remember that uc is a roller coaster. There will be down times but also some great times. I hope you feel better soon.

Big hugs from me too. I've been flaring for six weeks and really feeling sorry and sore after a colonoscopy on Wednesday. I read your post and I stopped feeling sorry for myself and though how bad it must be for you. I'm a mature aged mum with great support from my family which I'm so grateful for.
It's hard enough being a teenager without having to put up with this nasty little disease as well. It is hard to get sympathy compared to other diseases- not that we need sympathy - but just a better understanding would help us sufferers cope. Everyone seems to be an expert without having very much knowledge.
Hang tight. Be strong and realise you are not alone. Xxxx

I went undiagnosed for several months of hell soph year of college. Attendance, grades, and underwear all suffered mightily. Fortunately I had great professors who were really understanding of my situation.
Subzeromambo is right, many universities offer accommodations and I'm registered with office for students with disabilities. I can take extra time during a test, register for classes early, and even was able to pick exactly where I wanted to live if choosing on-campus.

Focus on the support you do have (forum, teacher, doctor?). There will be better times ahead.

Welcome to the club, bro, if you don't mind me calling you that.

Being a teenager with this crappy disorder is not fun. All I can say is, this is a great community and spend as much time as you can reading posts here. I have been here for about 3 to 4 years, still this is the first place I visit when I get up in the morning. If you read as much as you can in this forum, old and new, you will learn a lot and understand what questions you should ask to your gastroenterolohist (GI).

Engrave this on your mind, you will NOT take biologics like Humira or Remicade unless you try other drugs (read everyone's signature). Biologics will give you temporary relief but you will go under the knife to get rid of your colon rather soon. I have been diagnosed for about 6 years now and my GI pushes me all the time and I push her back.

If you have any questions, post here, we will try to answer to the best of our knowledge. This is just for your information and not a medical advice so it will be always good to check with your GI and RECORD EVERYTHING THAT YOU DO AND TAKE (like meds and supplements). I am trying to enroll in a clinical trial and they need a lot of history data. Such info is good for them and for you, should you meet a GI who absolutely thinks 'out of the box'.

DO NOT PAY ATTENTION TO FELLOW STUDENTS WHO MAKE FUN OF YOUR CONDITION. I am still a laughing stock in the family, I ignore.


Now, what meds are you on? what are your food habits? exercise habits? stress levels? how many BMs a day? How many times do you see blood in your stools? any abdominal cramps? Let us know and we will help you.
BTW, next time, you see your GI, ask for a prescription of Bentyl 10mg, this will reduce your number of trips to the restroom when you are at the school or even when you are studying. (Do not substitute this with Imodium, even if GI asks for it. Recent FDA long term side effect data has shown that it leads to pancreatitis, which in long run could lead to symptoms like diabetes.)

Good luck.

There is always more to learn. Even when you have had this disease for many years you can find out new information. I am also registered with the office of disabilities. I am only going online right now but I can still get accommodations.

Outsiders not understanding is one thing, but your own mother? She must go to your next GI appointment with you...in the room. She needs to hear you explain your every bowel movement to the doctor and then what the doctor says in return. She needs to know what it's like for you. At 18yrs old you need the support of every person around you. Your teachers and principal need to know what you are going through so they can help you as much as possible.

Research as much as possible on your own & read through other's posts here. Just remember that every person's experience is unique and what will work for one person will not work for another.

Not everyone is going to understand what you're going through & most don't even want to know. You just have to live with their blissful ignorance. I've discovered that the people closest to you need to have a better understanding of what you're going through in order for you to get better. Some of them won't ever understand. They just need to understand that it is an actual disease. It's chronic meaning you suffer with it every single day. You will feel fine one day and miserable the next....that's just how that particular cookie crumbles.

Find out if the school has someone you can go to and vent about things. Guidance counselor, school nurse, anyone. You need to be able to talk to someone...you can't hold it all in. I didn't tell anyone for years and finally when things got so bad that I couldn't leave the house I had to tell everyone. I have one person who seems unable to understand what's it's like, but she's trying.

Things will get easier. I promise. :)