Newly Diagnosed...and Scared!
Sat, July 09, 2011 11:43 AM
Hey everyone! I was just diagnosed with Crohn's Disease a few days ago and I'm honestly terrified! I had never even heard of this disease until a few weeks ago...Does anyone have suggestions for books or good information for the recently diagnosed? I don't even know what to expect in the future. Everyone I have talked to so far has been very doom and gloom about my diagnosis. Will my life never be back to normal?
Joined Jul 9, 2011
Thu, October 13, 2011 5:25 PM
Reply posted for lilcowgirl.
Hang in there.....it is not all doom and gloom. My daughter is 15 and was diagnosed 4 weeks ago....she is doing great and feeling a little better everyday. I am sure you are in the early stages with treatment....she has avoided the steroids so far....hope we can continue that...she is tube feeding at night on a formula that is made for crohns patients....she is also on an aloe supplement that we know is helping...if you are open to natural ways to fight this disease let me know. But I agree....do not let the disease get you down! My daughter still plays basketball and is doing great!!! 
manzosJoined Oct 9, 2011
Sat, September 10, 2011 10:22 PM
Reply posted for lilcowgirl.
Hello! I completely understand where you are coming from. I was terrified and scared when I was diagnosed with UC in January of 2011(the week of my birthday unfortunately). I was hospitalized and the doctors thought I might have to have surgery. My advice to you would be not to make Crohns define your life. You define your life, not your disease! Please take every day one step at a time! It helped a lot having a support system including family and good, close friends.
One thing I learned is who my real friends really are. Some people thought it was weird when I didn't want to go out and do things normal 22 year olds would want to do. I couldn't drink, eat pizza, other things you would do in a college environment. I finally reached out for help, and luckily had my family and one really amazing friend who stuck by me and helped me get my life back.
Learn as much as you possibly can. The CCFA community is always very helpful to me. Although I can't get on daily, I try to get on once a month. Talking to others with the disease helps. Many friends/family don't understand because they've never been through something like this. the links on the side-information and resource center...shop gear and books...the books, links are really helpful to me.
Ask your doctor as many questions as possible. Take someone with you to appointments is helpful because sometimes it's hard to take everything you learned in the appointment away with you. A notebook during appointments always helps. Your dr can have many good resources on how to deal with CD/UC. One last thing I would suggest is try to do something that will make you happy. For me, this is music. Playing piano/singing has made me feel normal and happy again. Also, I started going to the gym 3 times a week and walking the rest of the week after work. It is a great stress reliever. If you ever need to talk or need a friend, we're all here to help :) Good luck with everything!!
Joined Jan 25, 2011
Tue, August 02, 2011 11:44 PM
Reply posted for lilcowgirl.
Hang in there lil,
I remember how overwhelmed I felt at first. I was 21 when I was diagnosed but I balled like baby. Mostly because I misunderstood the doctor when he told me over the phone that crohn's was a "chronic" disease, I thought he meant a "fatal" disease.
Well, it has been 16 years since that then and I'm still here. Yes, I have crohn's disease. But it doesn't have me! There very well may be some difficult days ahead for all of us - but with the help from a good support system, and a vibrant faith, there is always hope.
Information will be your biggest weapon early on. The more you can read and understand about your diagnosis, the more empowered you will feel.
I would encourage you to not think about "normal" as the way things used to be. It will be important for you to develop a new "normal" and as has already been indicated - you will learn how to adjust and deal with the symptoms. Things like: you'll find that you almost subconsciously scope out where the bathrooms are in any new environment; you'll probably know where all the best bathrooms are in your areas; over time you'll learn what foods might give you trouble and simply learn to avoid them.
And I don't say this flippantly - but you will learn so much about yourself, your ability to handle and cope with difficult/embarrassing situations, the depth of love your family has for you and their willingness to help and support you - that in time you may even come to recognize (as I have) that dealing with this disease has actually helped you to grow as a person. I am honestly grateful for the lessons that I have learned!
Truth is lil - nobody is "normal" anyway. But dealing with crohn's can help you grow and develop into a much stronger person.
My thoughts and prayers are with you. And seriously - take one day at a time.
juthguyJoined Aug 2, 2011
Sun, July 10, 2011 2:13 PM
Reply posted for lilcowgirl.
I understand how you feel. My only saving grace was that I had family members with Crohn's which helped alot. Definitely explore the internet and read everything CCFA has posted. I had a great pediatric GI who gave me CCFA's info as a support. Look for a chapter that meets in your area, which will give you face-to-face support. I was diagnosed 10 years ago and have had some major complications but with my doctors' help and my family's support, I have made it to being a happy, healthy individual. Being diagnosed with Crohn's is not the end of the world, it just means that you might have to accomplish your goals a little differently.
Joined Jul 10, 2011
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