Community Forum

i'm 19 years old and I was diagnosed with Crohns when I was 12. The past few years though I feel like I'm just getting sicker and sicker! I feel as though my teenage years were robbed from me because of this horrible disease. And now I'm entering my 20's and I live like a grama. Seriously, my family calls me grama... It really gets me down emotionally because I physically have no energy to do much of anything. And it seems like anywhere I go I end up getting a stomach ache so it's resulted in me staying home majority of the time. Netflix and my bed are my best friend, but I wish they weren't. I want so much more for myself. I also get pretty mean and annoyed while I'm sick. It's all out of frustration and pain, but it results in me straining the relationships with my friends and family. I just don't know how to put on a happy face when on the inside I'm feeling every sad and angry emotion there is. I often wonder how I'll ever maintain a job. The thought of not being successful and not being able to lead a normal life just breaks my heart. I remain hopeful that one day some medication will finally work on me, but that day seems far away. Please tell me there's someone out there that can relate!

 Reply posted for amberowen.

I was diagnosed with UC when I was just 21 so I know what you're going through. When I was on Remicade I swear I was the only person in that room under the age of 50 going to get those treatments. Going through all of the treatment I felt like a little old lady, especially when it came to steroid drugs. They always made my bones so week. It took years of trial and error but I finally found what worked for me and I've been in remission for over two years. 

Check out my blog for my UC story. I know you have Crohn's but you may still find some comfort in my story. Hang in there, you are not alone. 

My blog: http://www.chitchatmama.com/

 Reply posted for lr246.

Also you are going to get frustrated and depressed which is reasonable. I have been saying recently I am sick and tired of being sick and tired and it's true; however, it is what comes with the illness unfortunately. Keep taking care of yourself!

 Reply posted for amberowen.

I completely u derstand where you are coming from. I agree that you shoukd tell your family how they make you feel. When you have their support it will make you feel that much stronger. I am 24 and was diagnosed 4 years ago. You may think you will not be able to go to school, have a job etc. but have more faith in yourself. Yes there are days when we can barely move, but you'd be surprised the strength you have to move forward and complete goals you have for yourself. As for friends, i've learned that people that are not there for you and do not understand your illness and do not want to be there for you, are not meant to be part of your life then. You will meet friends along the way that will have your back and you do not need people that are going to bring you down more. Recently, I am in a flare and have c difficle. I am at a point where my body is just worn and weak and I feel like a "grama" as you said. I am fortunate my family is supportive but know that you have all these individuals going through the disease to help you as well. I have been going to work and do the best I can. Making it through undergraduate when I was first diagnosed was not easy but you find the strength within yourself. Keep taking care of yourself and talk to your family i'm sure they will understand where you are coming from and they do not intentionally mean to hurt you.

 Reply posted for amberowen.

hi! i'm 24, and was diagnosed 3 years ago so i'm still fairly new to the scene. that being said, i think there's so much that i can relate to in what you wrote and wanna send some <3 to you! thank you for sharing.

if your family calling you 'grama' isn't feeling supportive, tell them that. ask them to change and give them some examples. if you want to maintain a teasing relationship w/ your family, (cuz sometimes teasing is fun!) tell them ways you LIKE to be teased, and ways you don't.
also, i like to make lists of things i like to do w/ friends and family when i'm feeling bad. lots of them include people bringing me yummy herbal teas and having folks over to drink them, sitting and watching movies, snuggling and having it be okay that i'm grumpy. It's still a struggle to feel like 'i'm the downer' or 'no fun' or 'needy' but NOBODY is happy all the time, and it's the truth that we live in a sick world (whether that's IBD-related or the reality of our sick ecosystems and legacies of racism), we need to make authentic space in our relationships with eachother to feel that sickness, and move towrads healing! find communities around you and be part of communities that feel empowering and accepting of you, all the parts of you including the beautiful and grumpy sick parts.

 Reply posted for amberowen.

Hello,
My son is 16 and goes through all of the same things that you do. It is a difficult road. You are not alone. I have found that he needs to have a support system in place. There are people in your life that may not be supporting you, but there are also people who have reached out and maybe you have not accepted it. I do that often because I don't want to burden any one. surround yourself with those that will support you. Let them be there for you. Help them to understand how they can help you. I hope you are able to find others that are going through what you are and find that you are not alone. I know you are not. 

Praying for you,
Mom estoch