Community Forum

Hey
My name is Brooke, and I'm 14 years old. It's the end of April, and I'm moving into a highschool setting. I've had UC for about a year now, and it's not been easy. But I've mannaged to keep my grades up and keep my relationships healthy. I'm a bit scared for highschool, mainly because of my "gut problem" as I call it. Many teachers don't know, although the school nurse told me she told them. Plus, there's alot of drugs going around and I'm scared that if I somehow get into a siduation I can't get out of, it's going to hurt me.
And not just that. Home life seems to get harder and harder. My father doesn't seem to care or think of my gut problem. He makes me feel like a burden or just another mouth to feed. My mother says not to listen to him, but lately it's been poking at me,
Any advice?

Reply posted for ManyCakesForYou.

Hey love, I get how its like. I'm 15 and a freshman in highschool with crohns disease. It was difficult I must admit but there's always a bright side. If you wanna chat, you can email me at findeisencaroline@gmail.com or add me on insta or Snapchat @svggranny :) Hope to hear from you soon -caroline

Reply posted for ManyCakesForYou.

Hey Brooke, i'm Kirsten :)

I'm sorry to hear about your UC diagnosis. I've had UC since I was 7, so I went through Middle and High school with it. It was definitely scary at some times. The summer before my sophomore year, I was in the hospital because of my UC and I got out right before school started, so I was really scared about how I was going to react to the meds they put me on and how I was going to fair after getting out. But I had some amazing and very understanding friends and teachers that made a huge impact on my life and my health. You mentioned that you've already talked to the nurse, but if you're comfortable with it, you should talk directly to your teachers, too, just to make sure that they actaully got all the right information. You don't have to go into a lot of detail or anything, just let them know the basics, that you have a Chronic illness that will probably require frequent trips to the bathroom, and that there will be really good days and also really bad days. It could also help to have a Dr's note from your GI, just to back it up. You should also be able to fill out an official form, I think mine was called a 501-c plan, that can give you accomodations and it'll help the "law" be on your side if a teacher tries to fail you or punish you for missing class or needing to leave for the bathroom often. Also, it can help out with test taking situations.

I'm not sure I can really speak much to the drug situation, but if you're ever confronted with something like that, say no. I know that's cliche but I know a lot of people have a hard time just saying no and it's gotten them into trouble. You aren't going to hurt anyones feelings or offend anyone by turning down drugs or alcohol. And if they don't take no for an answer, stand firm and pull the "sick kid" card. It's likely that whatever medication you're on wouldn't react well to drugs or alcohol anyways so tell them that, and again, you don't have to go into detail. And if they still don't respect your answer, ignore them and walk away. It takes guts (pun intended) but you're strong, you got this!

I am so so sorry to read about your home situation. I can't even begin to imagine what you're going through there. I'm just going to flat out say it, it's not fair that your dad isn't trying to understand or care about your gut problem. But you need to know and truly believe in your head and in your heart that you are NOT a burden. Your disease sucks, but it does not make you any less of a person than anyone else in your family or in your school. It does not mean that you are not worth loving and encouraging. If you're feeling brave, you could try sitting down with him and just talking to him about everything, your gut problem, your symptoms, what frustrates you about it, and maybe even how his actions (or lack there of) are making you feel. But if he still refuses to understand or care, you need to try and let it go. Confront the frustration, validate it, and let it go. Because if there's one sure fire thing that will make your UC worse, it's stress. But like I said, you're strong, you got this. And on the days you feel like you don't just try talking about it with someone you trust, maybe a good friend or a close teacher or even the school guidance counselor. Or try journaling. I got into journaling and it's been really cool because you can always go back and read about how you were compared to where you are currently or "tips and tricks" you've learned for yourself. 

Anyways, all that's to say that you are not alone and you are not a burden. There are so many resources you can use and so many people who are on your side and want to help. So take advantage of those resources and people. You are so st

Reply posted for administrator.

Hi Brooke,
Thanks for sharing.  We are sorry that you are having a hard time with your disease.  Living with IBD can be challenges but there is support.  
 
There are other high school students that you can talk with.   First find out if there is a support group in your area at:  https://www.crohnscolitisfoundation.org/living-with-crohns-colitis/find-a-support-group/ .    We also have a summer camp https://www.crohnscolitisfoundation.org/get-involved/camp-oasis/
 
Also check out our teen guide.   It has some tips that might be helpful for you at: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
 
Since UC is a chronic disease, you are entitled to “school accommodations”.   Accommodations like bathroom breaks, open bathroom pass or “stop the clock” on test can help you succeed in school.   Check out the accommodation fact sheet at: https://www.crohnscolitisfoundation.org/assets/pdfs/new-school-accommodation.pdf.   

Finally, try to surround yourself with positive people and block the negativity that comes your way.     Check out campus connection to chat with college student who know what you are going through at:  https://www.crohnscolitisfoundation.org/campus-connection/
 
Call or email us if you want to talk at 888-694-8872 x 8 or info@crohnscolitisfoundation.org