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. "HollyDaze" 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 you help, and your mail!
After receiving a link to your page, I was over whelmed by the stories and quotes from teens with Crohn's Disease. I myself might or might not have the disease but I know someone who has been diagnosed with CD. She told me about it just recently, well, in the last two months or so. She was diagnosed sometime around September or October I think...but until then, the doctors didn't really know what was wrong with her. And being the hard-headed, "Doctors are quacks looking for their next pay check," kind of person. I simply doubted her pains and was very un-sympathetic and a poor friend. After reading a couple of experiences, I now feel that I have a better understanding of what someone suffering from CD must feel like having to deal with that pain day in and day out. I know I can never truly understand the concept but like I said. I might or might not have the disease myself. I suffer from many of the same ailments that my friend does (Heather). But I refuse medical treatment because I have no health insurance and my Dad is still battling with his Health Insurance Company to get me back on the plan.
So this I say honestly and openly. I hope that a cure of sorts is discovered in the future or at least a way to help prevent attacks from eating dairy (lactose) products, which I wish I could eat (I'm lactose intolerant) :- ( But anyway. Great job on the web sight. I shall forward the link onto some friends who are understanding of situations/circumstances such as having a disease like CD. And hopefully we (by we, I mean you) can get the word out to everyone that this is a serious subject and that everyone should be more understanding.
Once again, great job. Keep up the good work.
I was diagnosed with Crohn's at the age of 13. I had been playing
competitive soccer since I was 10. To say the least, this put a damper on
playing sports. I continued to play soccer and other sports before I was
successfully diagnosed. After being diagnosed, I took a couple of months
off. I was put on a very high regiment of steroids. I continued to play
soccer all the way through high school. I played through flare-ups, my
eyes still set on an athletic scholarship. I had a huge flare-up my senior
year and was not able to perform well in tournaments where college coaches came
to recruit. I still was offered scholarships to a number of universities.
I accepted a scholarship to a local Division 1 university. In college, I
had to learn how to not only manage stress associated with the pressure of
making good grades, but also the pressure of playing well. I never had a
flare-up bad enough to hospitalize me. I managed my Crohn's by watching
what I ate and trying to remain as stress-free as possible. You have to learn
how to not sweat the small stuff. I have accepted Crohn's as a part of my
life since the day I was diagnosed. But I have learned since that day that
it does not have to control it. You do not have to succumb to the illness.
I have since graduated and am
now attending graduate school. I plan on getting my master's in nutrition
and eventually a Ph.D. Since being diagnosed with Crohn's, I have been on
one medication or another. Like anyone else who suffers with CD, I am sick
of it. I have been trying to manage this disease with nutrition. My
doctors never really encouraged me to watch what I ate. I think this is a
facet that is being neglected. I believe that nutrition is as important as
the medication we are being prescribed. I hope to one day offer
alternatives to the daily medication regiments we are faced with. I hate
this disease. But I have made sure not to become bitter. I would not
be the person I am today, were it not for Crohn's. I would not have ended
up at the university I attended and would not have met my future husband.
I
would not have chosen the field I am in, therefore never making a difference in
another CD sufferers life. So, despite the problems I have had, I thank
God for the life he has given to me.
I am not a teen but a 29 year old woman with a mother who suffers from severe Crohn's, and now I am starting to show symptoms of the disease. I applaud your website and your testimony. You are a very strong person and very talented. Thank you for sharing your story. I have been searching the web all morning, reading various medical reports on Crohn's and your web site is the one I have taken more information from than any other. I can not wait to share it with my mother. Especially the recipe page. God Bless you and thank you again.
I just want to say I LOVE your website. It really comforts me...I go to it at least once a day and it makes me laugh, cry...and just vent. I am starting Remicade in a few days. I read you feedback on it and it sounds like a good choice for me. I'm ready to try something new and my GI seems to think that it is a step in the right direction. I have arthritis in my ankle and a persistent abscess...doc seems to think Remicade will help all...I hope so.
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