Community Forum

So we all know its rough to have IBD, or any other crohnic disease, but I just don't feel like I can deal with it any more, I mean some days I'm fine, but somehow there are days like today when I just feel horrible about the future. I mean I'm going to be a high school senior, so I'm looking at colleges and I just want have normal concerns, but my life is so different than all my friends, I feel like I should be 47 not 17! Its sad because I lean on my best friend too much to help me, and my boyfriend doesn't really know how to handle me being sick so its really frustrating- but I mean really who knows unless they have it! I love my parents too but they want to protect me so much that I feel like they are babying me. God has been the only thing that has kept me going through all of this, but even sometimes with Him I don't feel like I can do it, I suppose I just feel more alone than anything because I don't know anyone that I can relate too with stuff like this! I want to just live a normal life - or at least feel normal again.

 Reply posted for Jenn D H.

A a mom with a young daughter with Crohn's you have given me hope. I have considered the cost of the disease on her life, but I also see it as an opportunitiy for her in the same way you are pursuing it. Good for you and best wishes for a successful career. Thank you.

 Reply posted for rachj.

Hi Rachj,

I am 39 years old diagnosed with Crohn's 6 year's ago.I have  an 11 year old little girl who depends solely on me. I feel the same way often. I joined this site yesterday and believe it or not I am feeling so much better just by reading the positive things people write. Also the amount of time people have been living with these diseases. There is hope for us. I believe a cure is near. We should put our faith in god, I believe he has a plan for us....Keep your friends and family close. They ARE your support. They may not fully understand what you are going through but I know they love and care about you.

 Reply posted for rachj.

Hi rachj,

I'm Brittany (Sonyas 15 year old daughter from the previous post) and I just wanted you to know that you're not alone in this. I've been there and felt the same things. That feeling of just wanting it all to be over and done with is hard and it makes you feel more alone than you really are. I've been there and I want you to know that it gets better.

When people told me that I would adjust and that I would get better, it was really hard to believe them. It just felt like my life would always be different from everyone elses and that normal life was so out of reach for me now. And in a way, I wasn't wrong, but I really wasn't right either.

You do get to have a normal life, it's just a new normal. If I learned one thing over the past 2 years, it's that I have IBD... IBD does not have me. It's a part of my life and it's made me a better, more compassionate person. In fact, I've been inspired to some day become a doctor because of my diagnosis with UC.

Please don't give up hope, because it's going to get better. And I know that it's hard to lean on people that dont have it, because they truly can't understand how you're feeling when you're having a bad day, whether its physical or emotional.

If you ever want to talk, you're more than welcome to send me an email. I've been able to talk to a few people my age with IBD over the last month and it's been such a relief, such an instant comfort and I would love to be that person for you. Here's my email: fallenmelody08@gmail.com

You can use it or not use it, that's completely up to you. I just want you to know that the option is always there if you ever want to talk, whether it's just about IBD or you just have to have a normal conversation with someone who knows exactly what you're feeling/going through.

Take care, rachj. Its going to be okay. :)

- Brittany

 Reply posted for rachj.

I read your post and I have a daughter 15 who has had UC for over 2 years, I felt like when I was reading your post I was reading something she had written.  She would love so much to talk to you if you were interested please let me know if you would like to be in contact w/her through this forum and I will give you her e-mail address.

Take Care sweet girl it will be ok.

 Reply posted for rachj.

 Reply posted for rachj.

I was diagnosed at 16 with Crohn's and am now 24. It is hard to have to deal with everything, but it can be done. In December 2006 I graduated with a B.S. in biochemistry and a minor in German after attending my university for 4.5 years. Since then I have been taking part in a transition program between undergrad and grad school to help gain more research experience.

For me, although the disease can be a pain in the butt, it has also given me so much. Because stress makes the disease worse and after having to deal with one finals week of basically sleeping next to the toilet and taking the maximize dose of pepto in a 24 hour period that week, I learned great study skills and time management skills. The disease has also given me determination to pursue my career, which is to research the IBD's to hopefully one day come up with a treatment that treats the disease itself instead of just the symptoms.

Thanks in part to all of these skills and everything I have been through, I wrote my personal statement for my graduate school applications about my disease and what I have gained from it, and not only did that statement help get me into a really great school, but I was nominated for 5 year fellowship, which I was awarded.

If you let the disease get the best of you, then it will be hard. But if you just say to yourself that you are going to do the best you can to do whatever it takes to control it and believe that you will, and then life isn't too bad. I know it might sound really hard, but just try to appreciate even small victories until the big one like remission comes along.

 Reply posted for rachj.

Listen... there is something you can try, if you so choose to suspend your disbelief or skepticism for a moment. It's a self-help technique that's helping me to gain control over what I can in my life. Where nothing's worked for me, mind over matter gives me great hope.

EFT = Emotional Freedom Technique. I'm not claiming this will help with the disease, but it will help you feel better about the disease and all kinds of things.

http://emofree.com/eftmanual/EFTmanl2.html#Ingredient1

or maybe if that doesn't work

www.eft.com

Hope it works for you. Let me know how it goes. AmplusAnima@gmail.com

Well and wonderful wishes,

=Carla

 Reply posted for rachj.

I'm sorry you feel like crying =(, and belive me, we all have days like this so you are not alone. I'm 24 now but I was diagnosed when I was 16 so I know how it feels to be in high school with this disease. I couldn't play soccer my senior yr due to colitis and at that time, soccer was pretty much my life.  Also, I can relate to friends being supportive but your right; they don't fully understand unless they have it. As far as your parents, they prob. are just looking out for you but maybe try voicing your concern with them.  Although it was hard, I was able to make it through college and I actually have my Master's degree now so even though it's a long road and we have to take on more than other college kids; it is possible and if I can do it I believe others can too, jsut don't give up. Keep looking for support on this website cuz everyone can relate. I hope you feel better and can smile today!