Struggling with Crohn's Disease as a Teenager

I am 19 years old, and I feel like everyone expects me to be well, normal. I've always been stressed and always needed to have an answer to everything. I suffer from anxiety attacks often and on top of all that, I deal with my Crohn's and colitis disease every day. I have a life like most, I work, go out, have a boyfriend, and a supportive family but lately I feel like life is just unbearable... it's getting hard to keep up. I'm starting school in September, my first year of college, and I'm getting very sick again. I received my diagnosis when I was 11 years old. I had tried every drug out there and was just about to give up hope when finally my doctor put me on Remicade, an IV that relieved me from all my symptoms for about 5 years but like all good things, it came to an end. I got so sick in between the time of my flare-up and trying to find a new medication to help me that I ended up in surgery. On April 7th, 2010, I came out of the hospital with a colostomy bag. After my surgery, I felt great, I was on top of the world. I was finally able to see what it was like to go back to a healthy, "normal" life without having to worry where a washroom was everywhere I went. My doctor told me that I should stay in remission, on average 5 years. It has been a year and four months since my surgery and I am having nothing but problems. I have had extremely bad pains, following the pains would be the shakes and then I would feel so weak I wouldn't be able to help but pass out. I feel weaker every day, in 2 weeks I've lost 15 pounds. I have been visiting my doctor once a month for the last four months, I have got medication from him and I also had a scope done last Friday (July 29th). My doctor went in and stretched open my stoma because it has strictures in it which is making everything hard to pass through... also found that I have active Crohn's. The problem is there are more strictures deeper down and I have to go for x-rays this Friday (August 5th) to see if my doctor can get to them with medication or if I have to go into immediate surgery. Now here's the shitty part, my doctor is going on vacation for four weeks, if I need surgery he wants to wait until he is back. Well, I'm starting my first year of college, I'm already nervous as all hell, dealing with being a teenager, living on my own, having to find a job, get good grades, meet new people, and live with a colostomy bag, and on top of that, I have to miss the beginning of my first year of school. I don't have anyone my age to talk to about any of this stuff, I don't know anyone my age who has a colostomy bag. I honestly need someone who knows what I've gone through and have done it themselves too. So if you are 19 years old, you have friends who try to understand but never really will, or have a boyfriend you can't have sex with half the time because it hurts or is uncomfortable, or just need someone to talk to about the hell we go through every day, please feel free to contact me.

I'm not 19 or even close to it, but I have gone through what you are experiencing. I'm sure you've been told this, but it truthfully does and will get better. If you would like to just chat, etc., I have a great listening ear and experience with what you are going through. God bless you, dear lady!

Seems like you and I are in the exact same boat, my friend. 19, starting school, all that good stuff.

Well, sweetheart, you came to the right place! This site is full of brave people who not only know what you're going through but are willing to help in any way they can. I dare say, there's nothing you'll face or fear that someone here couldn't relate to (Kemicolon is proof). Just continue to reach out, feel safe to ask questions, and take comfort in knowing that you're not alone.

Hi Lily, well, what can I say? You have been through such a lot for such a youngster, but you still have a lot of living to do. There is a saying that what doesn't kill us makes us stronger, so as I've been told many times, I need to take every day as it comes. I know myself that if I start trying to plan too far ahead, I start to get anxious and feel like I'm falling apart. At your age, you have masses going on - thinking about your future, about relationships, about fashion, and how you appear to others - which can cause a great deal of stress. It sounds like your doctor having his holidays is stressing you, which with your condition will probably aggravate your health problems. All these feelings you're having are perfectly normal because they're your feelings, and nobody can tell you that what you're feeling is wrong. So what is important is to find a way to cope with all the shit that is going on. The very first thing is coping with your health because without looking after yourself the best way you can, nothing else will happen. Always try to focus on the things you enjoy and not what is expected of you. As for sex, well, this is something that you do when you are ready and want to, and not be pressurized into if you don't feel like it. That way, it's more enjoyable, and believe me, it's not the greatest thing in life. Someone who loves you for who you are is far more important. That person who looks after you no matter what will be the best thing ever in your life, and believe me, the rest of your life is yet to come. So look after yourself, and I'm sure others on this site will be able to help you, even if you just read what everyone has written, it helps. LOL

My Ostomy Journey: Ryan | Hollister

Hi Lily! My name is Traci, it's very nice to meet you! If first impressions are right, I can already tell that you're a real fighter! I too was diagnosed young. I agree with you that having an ostomy was so much better than being chained to a bathroom at all times and living in painful hell! I think you're starting to find out that having an ostomy is sometimes hard work and you still have problems, but different ones. One thing that didn't change is the way our bodies handle stress, and it seems like you have been under a lot of stress lately... and with good reasons! Living on your own and starting college for the first time, and throw in being sick, it's frustrating!!! (By the way, I get monthly dilation myself and it's not fun, but it helps me!) I too found it hard to talk to my high school friends about it because they just couldn't understand what I was going through! And I was confused about what I would tell my new friends and classmates in college. I found that being honest was the best thing, and if my friends didn't want to listen to me talk about my illness, then they weren't really worth my time anyway! I know that your life is crazy and it's always going to seem like you're taking one step forward and two steps back, but... it gets better. It just takes time! As far as sex goes, yes, it will sometimes hurt... I still find sex very painful... but there are other things to do, and if he loves you (and it sounds like you're a lucky lady that he does love you), you both will work it out. Be patient and have it looked at by a gynecologist. He or she may be able to help you with that problem, and it will be one less thing to worry about! I don't know the best advice to give you, but the one thing I've learned over the last 26 years with Crohn's disease is that positive thoughts bring me calmness and help me cope, and negative thoughts make me stressed and make my gut hurt! So find a support group in your area or talk to someone about what's bothering you... talking or writing it out can be such great therapy! Don't be shy to ask questions or ask for help! Like everyone says, we're all here for you anytime!! Take care, let us know how things are going? ~Traci~

I didn't know how this site worked 100% because I'm a newbie and I'm just reading these comments now. You all are such amazing and beautiful people. Thank you so much for all of your advice. You have touched my heart and put a smile on my face!!! It makes me feel awesome knowing that so many people out there, whom I don't even know, are here to support me. Thank you 3