Thanks to everyone who has been sending me their experiences and comments about the website. It's really nice to know that lots of people are getting some good use from it. Here's a sample of the mail I've received. Some letters have been edited for space. If you want your e-mail address displayed by your comments, be sure to let me know. Otherwise, I won't put it up. After all, we all value our privacy! Several people have a nasty habit of not fully typing their e-mail address, especially on the forms. "FBenson" is not a complete address. I must also have the "@wherever. com" to send you a reply. So please, send all of the information for an accurate response. One more thing: I get so much mail everyday that sometimes I accidentally overlook a letter or two. If you don't get a response in a few days or so, e-mail me again and remind me, please! Thanks for your help, and your mail!
Thank you so very much for this website, you have no idea how helpful you have been for my daughter, it's not a disease easily discussed or understood by many. This is a great site for Mom's too.
I am 23 years old, and currently serving in the United States Army at Fort Bragg in North Carolina. I was Diagnosed with Crohn's Disease while I was Deployed to Kosovo (a very small country between Yugoslavia and Macedonia) last spring. For the first time in my life I was faced with something that I had absolutely no control over, and it was hard. Almost immediately my mother started e-mailing me sites about Crohn's, and yours was one of them. At first my doctor could not control it. I was on 100mg 6mp, 600mg of Mesalamine 3x a day, and 100mg of Prednisone a day, but nothing would work. I saw on the site that you had been given Remicade, and asked my doctor about it. Usually the Army is not willing to use it as a treatment, they would rather Discharge you. He said he would make an exception in my case because I want to stay in the Army. I had My infusion in September, and have been in remission ever since. Thank you for the GREAT web site.
I can't tell you how relieved/apprehensive I was when I found your website! I have recently been diagnosed with IBS or possible Crohn's. My dad has Crohn's and when I was 4 he had to be operated on. I have been going through a really bad patch of my life recently and I have had a really bad time of it, I lost a stone in a fortnight and haven't put any of it back on over Christmas. Dad is convinced it is Crohn's and I am seeing the doctor when I go back to Uni to insist on some tests being done as this term will be very heavy for me. I have done no work for 2 months and my doctor diagnosed me as being depressed. In some ways I hope I am diagnosed as having CD because then I can do something about it. But I am scared of the tests and what they might find, I don't want to give up any of my activities but I might have to at this rate which would upset me even more. This website has been totally helpful though as it has given me a perspective on the disease and a bit more information than my dad could give me.
I was real glad to see this web site!!!!!!!! My daughter was diagnosed w/Crohn's on 10-30-00, just 6 days after her 17th birthday. She is in the hospital right now, this is her 3rd week there. The doctors are still battling if it Crohn's or ulcerative colitis. She is suppose to have surgery this Friday. She isn't doing too well at all. She just received her 3rd blood transfusion Christmas night. She has had severe complications ranging from a bacterial infection from a PICC line to her blood pressure bottoming out with 104.5+ fevers. I've been praying a lot!! :) I do not have access to the web at home so I'll have to do some more research during breaks at work. I am going to print some things from your website to give her, just to let her know there are more teens like her.
I still remember it like it was yesterday. I found out something was wrong April 10 when I got home from my trip to Florida. My doctor's thought it was a parasite. Then for the next four months they just figured I was just lying and it was all in my head. Finally on August 16,1998 I had to go in for a doctor's appointment to have a colonoscopy done I was very scared about that. Finally when it was over and I woke up my doctor called my mom in and discussed to me what I had and started me on all these medications. That had caused me to miss out on a lot of my band performances. I was like what a great way to start off my Sophomore yr in High School. Now I am a Senior and about to Graduate. I am kind of glad that I have this because it made me look at life a totally different way now.
The more of this website I read, that more intrigued I am. It is hard being a
college student with Crohn's. I know that, and I was just diagnosed. It
has been slightly easier on me because I am looking at going into the medical
profession. I know what the doctors are talking about, and treatment
possibilities. But at the same time it is also scary to picture the
possibilities. I commend you for having this website, and the work that it
must take to keep it up. I am taking this holiday break to do all of the
research that I can on this disease, and possible treatments. I won't let
it rule me. If there is anything that I can do to help, I am more than willing.
Just
having support, and having contact with people that know what it's like has been
a great help to me already.
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