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I have been living with Crohn's Disease since I was 18 (2007). I am currently 21 years old and is recovering from my 2nd surgery within 3 years from this illness. My family has watched me be in pain for 3 years and every year I have ended up in the hospital at one point or another. My sister has been feeling sick for 2 weeks now and the pediatrician thought it was just a virus but because of the length of time, he decided to do bloodwork.

Today I found out my 16 year old sister tested positive for Crohn's Disease. It broke my heart and all I could do was cry. It's one thing for me to go through this, but now to watch my sister? My parents have to tell my sister today and I just can't be there because this news is just to upsetting.

I feel horrible and I don't know what to do. I can't tell her its going to be a walk in the park when she watched me lay in the hospital for 3 years on and off and have 2 surgeries. Of course I am going to be there at every doctor appt and colonoscopy, but I don't know what else I can do. Any suggestions to help me cope with this as well as what I can tell my sister. Crohn's has only been a burden on me and there is nothing positive from it, other than you can go in remission- but it will most likely come back.

 Reply posted for kdempsey15.

My brother was diagnosed with CD in 1995 and I was just diagnosed 9 months ago.  The one good thing to come out of my diagnosis is that we are there for each other in a way that others can't be.

Good luck to you and your sis!

 Reply posted for kdempsey15.

My sister and I both have Crohn's disease.  I've had it for more than 20 yrs and she was diagnosed about 12 yrs ago.  We have both been through more surgeries and complications that either of us can remember and now we both have Ileostomies as well.  For both of us, many times, our situations became very dire.  Our family has been through it all with us and we've been there for each other.

Crohn's is a tough disease, yes, but it is not the end of the world.  We have made it through and become stronger for our struggles.  You and your sister have such an advantage over many because you will have each other.  You can't ask for a better support system than that.  My sis and I have grown very close over the years because we talk about everything we've been through and are going through, and we don't have to worry that the other won't understand.

You both will get through this together and with your family support.  I wish you both the best.

Keri

 Reply posted for kdempsey15.

Sorry to hear about that. I definitely would not wish it on anyone. I'll get to your sister later but first, you mention that there is nothing positive about Crohn's and I beg to differ. My situation is different than everyone else but I have now had Crohn's for 11 years. I just had my first surgery in 2008 but before the surgery I can honestly say that I was pretty close to death. Even as all of this was happening, I dealt with it knowing that we are in an age where we are extremely lucky to be living. If I was born just 30 years ago, I would probably be dead by now. I don't regret having Crohn's because I truly believe that dealing with Crohn's has made me a better person and has definitely allowed me to deal with pressures of daily life with a complete understanding of 'how bad things can be'.

I think that many people do not think this way but it has always helped me to stay continually happy, even during the worst of it. Put yourself in someone else's shoes and then think about your life in comparison.

Is your life better than someone who has Crohn's but lives in a third world country and can have no medical care? Is your life better than those that have much worse diseases (some terminal)? Is your life better than those who don't have support systems and turn to drugs and other things? Is your life better than someone in your same circumstance that lived 100 years ago (or a healthy person 100 years ago)? If you stay positive and look at the beauty of the world and its people, I think you and your sister both will have a fantastic life. The fact that you have each other as resources makes it that much better.

I know I sound like a motivational speaker and I also know that I think more positively than most, but I have no doubt that if you think positively, life will be good. By being a positive role model, you and your sister will both benefit. Also, more specific advise which may or may not work: avoid surgery for as long as possible.

 Reply posted for kdempsey15.

My mother, sister, and myself have Crohns.  Actually, my sister and I were not speaking to each other when I got my diagnosis.  I was at home crying and didn't know what else to do so I called her.  We've been talking ever since. 

It is very helpful just to have someone who understands just be there and listen.  These symptoms are not easy to talk about.  You can't fix it or make her health better, but you certainly can be there, and when you say "I know how you feel", you really do know.  That's all your sister can expect from you, and she's lucky to have you.  I'm sure she'll be overwhelmed at first, so just stand back and be ready to catch her if she falls.

 Reply posted for kdempsey15.

Put your arms around her and give her a great big hug and say "we'll fight this together, forever and ever". Then wipe each others tears and do it.

                                         Joe