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. "Trillian6531" 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!
I'm sure you've got plenty of responses from other teens with Crohn's but I
thought my idea might help other people with the disease. I was diagnosed
July 5, 2000 and it was right before I started at my new high school. I
was really sick, as you know how Crohn's can get, and I really wasn't ready to
start school. I went anyway, thinking I could handle a whole day, when I
was badly mistaken. I got a full blow-out and was losing weight fast.
My mom was really worried about me and asked her students for ideas to help me
feel better (My mom is a teacher at my high school). For my birthday in
late August, she bought disposable cameras and gave them to her students to
spread and pass around. People made signs saying "We miss you
Liz!" and "We love you!" They all got together for pictures
during lunch and class. My mom got the pictures developed and surprised me
on my birthday when I was sick in bed. After seeing those pictures, I was
determined to get better. I made sure I took care of myself, because I saw
that people care about me and wouldn't want to see me like this. This
helped me pull through and sure enough I was able to return to school in
September! I had a lot of work to make up, but I never felt more love from
classmates. Many of
the juniors and seniors my mom taught checked on me every class period and my
friends made sure I got to my classes okay. I worked really hard, and even
though I missed 25 days, I made all A's and I feel happy. Crohn's has not
brought me down since, and I hope it never will again. Thank you for your
website!
My son was diagnosed with Crohn's Disease 2 1/2 years ago. He lost
weight as they tried different medications. Steroids built him up, but he
developed a hole in his bladder. One specialist told us more medication
would heal the bladder in about 3 months. Another specialist told us
surgery was the only way to go. They left the decision up to us! After
reading many articles and asking questions, we decided on surgery last year.
They fixed the bladder and removed 6" of intestine--luckily the
damaged area was all in one place. He has been symptom free except for
irritated eyes--we continue to try different medications to get his eyes back to
normal. My point is that different doctors will give totally opposite
advice, and I urge Crohn's patients and their parents to read all they can and
ask
questions! Go to a Crohn's seminar if you can. Get a second opinion
and don't let them intimate you! Also, explain your illness in college
scholarship applications if you have been unable to work due to the side
effects. Blessings to all who are going through this. May they
find a cure soon!
Hi, I first want to say that this is an awesome web site. I am really glad that there is site to know that other people are feeling your pain. I was diagnosed with Crohn's 4 years ago when I was in sixth grade. I was tired all the time, never wanted to do anything, plus had a bad stomach ache every day! The doctors didn't know what was wrong, they just said I didn't get enough sleep. Finally on February 16th I went to a stomach doctor. Immediately my doctor ran tests on me. I had blood tests and urine tests, etc. Then I had an upper GI and a lower G1, which the barium tested horrible! About a week later I had an Endoscope. My doctor discovered that I had Crohn's. A week later I had a Colonoscopy (the stuff you have to drink tastes horrible!) and they put me on tons of medicine. The worst medicine I went on was Prednisone. My cheeks blew up and I looked like a balloon. Kids made fun of me and I was extremely sad. I took 19 pills a day, which was just so annoying. I rarely had plans with people because I was in too much pain. It was completely miserable. Now 4 years later I am doing o.k. In November I had a flare up and they put me on Prednisone again! Luckily this time I didn't have a bad reaction. Currently I am on 12 pills a day. In the lasts few months though, I have had several bad experiences with my back and stomach. Its such a pain in the neck! I hate it! But I think to myself a lot that its not the worst thing in the world, and there's lots of kids out there that have it worst than I do. I am grateful that I have never had to been in the Hospital for a long period of time, and that there's worst things in life. I try to look at the bright side as much as possible!
My 10 year old son has Crohn's. At the conference there was mention of a study where they are giving people with Crohn's Lactobacillus GG. They had said that so far the results are good and that it would be O.K. to give it because it wouldn't do any harm. I ordered some for my son and didn't really think it was doing him any good until we ran out of it. When he wasn't on it he had three different episodes when he couldn't even get out of bed, he even missed the Memorial Day parade. This time I ordered enough for four months. For anyone that wants to try it the brand name is "Culturelle".
I have had Crohn's for about 5 years now, with mixed results, I eventually had to have my colon removed because the steroids didn't help anymore, and because i was on such a high dose for such a long time, the Prednisone eroded my hips and I had to have them replaced, I encourage people to be educated about what they are taking and its possible effects, thanks and God bless
I am 22 years old and from Toronto, Canada and have Crohn's disease. I was
diagnosed June 27, 2000. I have been checking in on this website since last
summer, when I was trying to figure this whole thing out. I really think your
site is great. It helped me to know that other young people were going through
the same types of stuff. At first I thought this was just a minor blip in my
life and would be gone in a month of medication. Boy, was I wrong! This has been
the hardest year of my life. I finished my third year of university and I felt
sick the whole year. I feel that no one understands what it feels like to always
have to be careful about something so basic and that should be enjoyable like
food intake! I have felt like I had the life sucked out of me in many ways. No
energy, etc. and I used to play sports all the time.
I am on Immuran and Budesonide, trying to enjoy this summer more than the last,
working and taking care of myself. My doctor said I should probably try Remicade
soon. Frankly anything that would give me my life back would be welcome! I guess
this all happened to me for a reason is all I can think. I am a lot more aware
of my body now and try to be good to myself. I am glad that all of us with this
illness can support each other because we are the only ones who really know what
it is like!
I was diagnosed with Crohn's disease in October of 1997 right after I
graduated high school. Just want I wanted. The doctors didn't know what it was
that I had. They kept misdiagnosing me with the flu since the only symptoms I
had was a fever, and weight loss. I had no stomach pain what so ever. After
being in the hospital for a week they finally figured if out. I am writing
because I just had a flare up for the first time since I was diagnosed, and they
just put me back on prednisone. I
am not real happy about that since I am going to be in a wedding in August and I
am also getting married next year. So I thought I would come to your website to
see if anyone wanted to talk, and if someone had any ideas on how I can maybe
control a flare up. Any ideas would be great.
Last year my son was diagnosed with Crohn's Disease. The doctor (Stanford
Hospital) was very certain that he had Crohn's from some sort of antibody
testing. The doctor was strongly recommending Prednisone. I felt that we should
try a change of environment before Prednisone. My son came to live with me in
Mt. Shasta, a rural area about 300 miles from the San Francisco Bay Area.
Amazingly he got much better after about 1 week. After 3 weeks he was completely
well. After a long process of elimination we have isolated the root cause to
either something in a rug or futon in his room. Now he can be back at his home
without any sign of illness.
His main symptoms were vomiting and high fever. He did not have diarrhea, so in
this sense he did not have classic symptoms. The symptoms would be back in
48 hours of returning him to his house during our process of elimination until
we got rid of the rug and futon. One of the keys here is that the causative
antigen was airborne, not ingested. Many researchers now believe that many
"autoimmune" conditions are causes by some antigen.
I want to thank you for your website and forum. It was reading this, and
understanding the agony of these teens, that persuaded my ex-wife to allow me to
experiment with our son before Prednisone therapy. I feared that Prednisone
would mask symptoms and reduce our ability to find causative issues if there
were any to be found. My ex-wife and I fear that there may be many people
out in the world that might be able to easily control their environment instead
of using an intrusive drug therapy.
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