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. "DelG_USALiteFixture" 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!
Firstly I have to tell you I have been sitting here crying for you all over
this insidious disease. I am 45 and have a daughter who is going out
with a guy who has CD. I wanted to know what he is going through so that I
may be able to be sensitive to his needs. That is what prompted me to look
it up. You all have been through so much I can't imagine what it is like
at your ages to have an illness like this. You are very brave and I would
like to congratulate you on this web
site, what a wonderful help you are to others. It is so important to be
able to share and I feel you have made a lot of people feel "not so
alone." Keep up the good work. Thank you for you time I think
you are wonderful.
I am 20 years old and have been dealing with Crohn's for the past 4 years,
after being misdiagnosed for about 6 months. I had a bad flare-up this
past summer, and having tried many meds from Asacol, Flagyl, Prednisone, and
others, I tried Remicade, I have to say it worked fairly well. I am
currently on 6-mp (and seem to be starting to flare up again). I just wanted to
say after reading the stories of others, I do feel a lot better knowing that
there are other people my age out there
that would be able to relate if they saw the wince on my face while I was having
a stomach cramp (which my 6 roommates are finally starting to recognize).
Although I know of people who have Crohn's, I have never actually talked to
anyone with the disease, so I have to say that it is very comforting to know
that you are all out there. My problem, is that I am trying to live my life like
a normal junior in college, late night studying, eating fast food, going out and
partying, and needless to say, it has affected the way I feel, especially
lately. So I can't really complain too much if I'm not feeling well,
because it is my own fault, but what can I say--I don't want to miss out on this
part of my life. So far I have not had to have surgery or anything,
thank God. Basically I am just blabbering on here, but I just wanted to say
hello, thanks for the great info on this site, and if anyone would like to email
me, I would love to talk to chat.
I'm from Thailand. I was just surfing on the web when I came across your site. It is a really awesome page it let's me know there are other people all over the world fighting the disease as well.
First, I just want to let you know how impressed I am with this incredible
website. I have had Crohn's Disease four years now and have never come across
this. I am not a teenager anymore, but am only 22yrs old. I was
diagnosed with CD my freshman year in college...not too fun! At first I
was in denial but when I experienced my first flare up I realized that I was
dealing with something truly serious. I have had many different
manifestations of Crohn's and all of them have been awful. I have had
uveitis, pyoderma gangrenosum, abscesses and major stomach problems. I
have been on Prednisone...it was horrible, Immuran, Asacol, Cyclosporine and
several antibiotics. The meds work I guess, I just feel like I am never
going to be 100% again. I have learned to deal with having Crohn's and try
to keep a positive outlook most of the time. After all, how can I be
miserable all the time, knowing there are people SO much worse off than me.
My support
system is incredible and my family and friends have certainly helped me deal
with all I have been through. However, nobody fully understands what I go
through and that is one of the hardest parts of this disease. I never feel
GREAT and I always have to watch what I do, eat, sleep, drink....soooo closely.
It gets really annoying! But again, I always have to be thankful that I am alive
and have people in my life who love me and are there for me when things are on a
bad slope.
It's wonderful to know that there are people like all of you out there who can
relate to my issues...I would love to correspond with some people directly and
hear other opinions and stories. Thanks for such a great idea!
I was searching the web tonight to find information on Crohn's. My 15 year old cousin Julie (birthday this past Monday) was diagnosed with Crohn's almost 6 months ago. She lives in Miami, and is in Miami Children's Hospital today--the fourth time since June. She has had two Remicade treatments the past two months, and responds for a short time, then gets very sick again. Last month she needed a transfusion, and might need one again tonight. Perhaps by reading stories of other teens, and going to your chat room, it will help her. Your parents must be so proud, that you have helped so many people, with your informative web site. Continue the great work, and I have bookmarked the site, and will continue to visit
Your Crohn's experience read similar to my own. In a weird way, it comforted me to read it. Thanks.
I'm so happy I found your site. I know some adults that have Crohn's and one other teen with Crohn's. It's hard to talk to the adults I know that have it because it's different. Their emotions are all different from a teen. So I'm really glad you have this site. I am 16 and was diagnosed at the end of my 8th grade year. I went to school that whole year taking Imodium and ran a low grade fever. My pediatrician did a barium enema and ruled out Crohn's. I wasn't getting better and I only weighed 67 lb., so finally I saw a GI specialist. He did a colonoscopy and diagnosed me with Crohn's. I was put on Prednisone and 6mp. Within a week I was constipated. I had never in my life ever been constipated, so my parents took me to the ER, they did x-rays and said it was just constipation. It was so weird. So my ninth grade year I was doing good, going to school pretty regularly. My sophomore year I went the first 4 days of school and that was it. I missed that whole year, and my school wasn't very cooperative. In February 2000 I was hospitalized because I wasn't getting better and I only weighed 77 lb.. They put in a picc line and I was npo for like a week. I had the picc for 7 weeks and gained 15 lb. Over the summer I felt great, I was enjoying life. I transferred to a new school because my other school was too stressful, and I'm repeating my sophomore year. I made lots of friends, and was having fun, getting involved with school activities (something I couldn't do before), I was doing really good, going to school on a regular basis. Then October 2 I had a gum grafting on two of my bottom teeth because my gums were receding. For a week I was on Advil, Tylenol, and Tylenol 3. IT TORE MY STOMACH UP, and I was put back in the hospital. They put me back on Prednisone and did Remicade. I was reluctant to go on Prednisone because ( I hate it, everyone does) last time I took it I got a migraine headache every time I had a bowel movement, and my face swells up and I look like chipmunk, but I had to take it. It's been 2 weeks since the Remicade infusion and I'm finally starting to feel the effects, my stomach aches are slowly going away. I still wake up in the night with bad pains though. I'm really nervous about going back to school because everyone is going to ask me where I was and I really hate explaining my situation to everyone. If anyone knows what I'm talking about I'd really like to talk to them.
Go back to October 2000
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