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. "Unimatrix01" 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!
I just want to say that your website is absolutely wonderful. I have had
symptoms of Crohn's since I was 15 years old. just like everyone else, all
of the doctors told me I was an anxious kid who put too much pressure on myself
in school. Another one of my favorite diagnoses was that I had irritable
bowel syndrome. ok-I am no doctor...but I knew that there was something
more to these awful stomach attacks. Finally, I saw a wonderful pediatric
gastro while I was in college last year (at Emory university) and he diagnosed
me with Crohn's. He felt so horrible that I had been suffering for so
long. He started me on Asacol and Prednisone and a million other
medicines. I have had two horrible flare ups in the last year....but they
were several months ago. Since then, I have been doing great. But
like I always say-Crohn's is the most unpredictable disease in the world. you
never know when it is going to act up. Since my diagnoses, I have had
every gastro test known to man. My parents refer to my colon as the
"million dollar colon." even though the disease is also in my
small intestine. I think that's kind of funny. I am tapering down my Prednisone
a bit now and that is a very weird process. Thanks for setting up this
site. You are truly an amazing person.
I was taken to the ER about 1 year ago. They ran tests on me for 3 days
until they found out what was wrong with me. I was diagnosed with
diverticulitis. I had emergency surgery due to my intestine bursting.
The surgeon gave me a temporary colostomy. I had reconnection surgery
about 6 weeks later. That didn't go too well. The operation itself
went fine, all the side effects were terrible. They sent me home 5 days
after my surgery. I had to go back to the ER the very next day. I
was then diagnosed with colitis. I basically spent the whole summer in the
hospital. I was in and out all the time. I developed abcesses and
had drains put in. I lost about 50 pounds. It was terrible. I
finally went home in August. I thought my troubles were over. In
September I developed a fistula between my colon and
the skin. It drains out of my stomach through the hole of the fistula.
I recently went to a different specialist. I will be going in for a
colonoscopy (not very pleasant, this will be my second one). From there
the specialist will determine what to do with me. Going to try to prevent
a third surgery. By the way, I am the youngest person diagnosed and
operated on due to diverticulitis.
Hey! My name is Daniela, I'm 19 y/o and I live in Australia.... I'm studying
Electronic Design, for those who are willing to read an extra line!! For the
last 3 or 4 years I have been constantly going to the doctors because of a
condition that I have which no one knows what it it is. I've had every test
done, x rays, ultra sound, been on different tablets... and they don't know what
it is! But by reading the information on your page it sound sorta familiar, the
symptoms... I've been declared Lactose Intolerant since Jan 2000 officially, and
I used to be a chocoholic...(I still am, but no one is supposed to know) I sleep
a lot, and I'm always tired for no reason, I lose weight and gain it again... my
stomach gets these terrible cramps... you the deal.... and its really hard to
live with because its amazing how much milk is used in everyday food! It used to
be tradition for my friends and I to go for Ice cream every Friday afternoon,
not I sip on my sorbet, while they eat their triple scoop ice cream with cream
and fudge! (so much fun!!) at home there is not much to eat because there is
other people so I cant exactly make mum cook specially for me, and she forgets
that I don't eat everything. I also cant eat Beef and Lamb, it gives me serious
cramps and like a floating feeling, which isn't very pleasant... So... its good
to know that there are other people who feel like me, coz I feel outta place
sometimes with everyone feeling great and me drowning
because of something that I ate! Its awful! My friends are great, but they are
humans and they forget about it too!! :( I hope everything goes well!!
I'm 18 and diagnosed with Crohn's disease when I was 14. In the past four years I've been on almost every medication I've heard here and they have kept the symptoms under control and I was never hospitalized. However, starting in November 1999 I began really losing weight like I had never before and I just could not eat. I went into the hospital and for a short time I was feeling better. But then everything started again and after not eating for about a month and losing 25 pounds, they decided I needed surgery. In March 2000 I had 2 feet of my colon removed. Surprisingly this was one of the best things that has ever happened to me. Although I had to drop out of my second semester of college and have about a 6 inch scare down my stomach, it was all worth it if I don't have to deal with this for a few years. The hardest thing for me to deal with now is the fact that my 14 year old sister may have Crohn's too. Doctors say it probably runs in families so there is a good chance she has it considering her symptoms and my history. My advice to people about to have surgery is if you can deal with the pain of Crohn's disease you can definitely deal with the pain of surgery.
I was diagnosed with Crohn's Disease on May 3rd, 2000. This came after many years of stomach pain, diarrhea, and inability to gain weight. After finally breaking down and going to a specialist, I was diagnosed. The colonoscopy and the upper G.I. were not as bad as I had thought. Since then I have been on an array of medications, which have helped in the battle, but I am still unable to gain lost weight. If you have or know of any secrets or remedies feel free to email me back, I would really appreciate it! Your website is fab!
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