Thanks to everyone who has been sending me their experiences and comments about the website. It's been quite a year! 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. "THS99" 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 day or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
You must be a remarkable young man. I am the mother of an 11 year old girl who hasn't been formally diagnosed yet. The jury is still out, because more testing needs to be done, but suspicions run high. Your web site has been a terrific help to us as we try to get her some relief. (She's been to school 3 days in two weeks). You are a fine example of the difference that one person can make in the world. Thanks, and keep up the good work.
Congratulations on both your Graduation and Remission. Have a wonderful Summer and relax while you can. Once college starts you will only have a limited amount of time for relaxation and fun. Your remission couldn't have come at a better time. Good Luck in College. I hope to graduate with my Degree in Psychology next May as long as my Crohn's calms down a bit. Congratulations again!
I was at home and it was the holidays; I was having cramping and the stomach aches didn't go away that whole night. So I figure...ok, just a little 24 hour virus. Next day... still there -so, it's a 48 hour virus. It will be gone soon. Another day goes by so I talk to my mom: "Oh, don't worry sweetie! You are just sick! Give it some time!" Well I gave it a lot of time. Anyway so then I went in for the colonoscopy, that was freaky to think about, it was my first "hospital procedure ever" and tears filled my eyes after the test I had COLITIS! Well it ain't a picnic, but I am going to fight like I hope everyone else is. I really want to talk to people so please feel free to e-mail me your stories, ideas, or feelings.
Hi! I would just like to say that your site has helped me a lot. I was first diagnosed with Crohn's September of 98. I am 13 now. When I first found out I had something, you know, permanent, I think I was in a kind of shock. I always thought that sort of stuff was for other people, it would never happen to me. I actually don't think I realized what was going on because I slept most of the time. My doctors are very good doctors. They diagnosed me in around 2 weeks after I went in! Usually I hear that people take even a couple years before anything is for sure. The only reason it took them so long was because those nasty barium tests didn't do anything (Ya gotta love that barium!). Finally, they ran the scope tests. I hate that laxative stuff! I only got down a little bit because of the fact that I puked it all up (Sounds nasty, I know). How the heck do they expect you to choke down that stuff? Especially when your stomach is empty anyway! Anyway, they took that test and it ended up that I had Crohn's (and my parents that I was anorexic! Ha!). I went into remission after a couple of weeks! Right after I took my Prednisone, everything seemed normal, my Crohn's count was a 9, no bathroom rushes, ext.... Then they tried to lower me on the stuff, bad idea. I went kinda out of remission. I don't think I was actually out of it, but I had to start taking Prednisone again. Now I am happy to say that I am completely off of Prednisone and almost off of sulfasalazine (I think I could be off of it, but my parents don't want to risk it). The only two meds I ever had to take, well besides some stuff to take care of some bacteria, was Prednisone. I am still on sulfasalazine. I was never on a special diet. I could even eat Taco Bell and drink Frosties from Wendy's!!!!! I heard that most everybody else is on a special diet. I am not trying to brag, I just want to state that I am doing good and hoping it stays that way!
My name is Ashley Reynolds and I am so glad I found your web site. I do not have Crohn's, I have a disease that they call the cousin of Crohn's: Eosinophilinic Gastroenteritis. The only difference is that mine's in my tummy only and you can't remove part of you tummy like you can your intestines. I am 19 now, but have had the disease since 4th grade - however it went undiagnosed till my freshman year. You did a good thing when you started this site. You have earned your wings to heaven! Have an amazing day.
I just finished skimming through your site. I think it's wonderful. Last year doctors said that my sickness was due to either IBS or stress. One doctor had me on Librax for a month. No one has really helped me with the do's and don'ts, what I should eat, how can I stop the irritability. Your website is great. I plan on returning to the doctor now that I know that my problem is not isolated or that it's all in my mind.
My name is Nicole. I was diagnosed with Crohn's about five years ago. I have been on Prednisone three times -- immediately after I was diagnosed and two times including right now for flare ups. I have read what people have said about prednisone on the web page and everyone complains about the "moonface". However, no one seemed to mention any way to avoid it. I have found that maintaining a low sodium diet keeps down the puffiness. The first time that I was on Prednisone. for a flare up I swelled quite a bit but I think that it would have been more if I had not tried to keep my sodium intake down. This time I have tried to keep the max amount of sodium per day at 1750 mg. So far after about one to two months of being on pred I have experienced very little puffiness if any at all. The problem is finding a variety of things to eat. I've been alternating between steak seasoned with Mrs. Dash (a great salt substitute) and spaghetti with a low-sodium sauce for weeks now and fruits and veggies for snacks. It's getting kind of monotonous. I crave fast food but that is out of the question :).
I am just writing to say thanks you for your fantastic web page! I have been really sick and all with Crohn's and have found your site to be a huge help! So yeah, thanks! :)
I was just diagnosed with Crohn's today! Woo Hoo! Actually, I'm pretty relieved. My doctors dragged it out for over a month and nobody seemed to know what was wrong with me. I went for all sorts of tests. I'm 20 years old and I live in California. I just found your website today and so far I like it very much. Anyway, I just wanted to say hello and thanks for making such a great site. It makes me feel better to know they're so many others with the same problem as me. :-)
My name is Claude Hill and I am 24 years old now. I too, am still suffering from Crohn's disease, and have been since the age of 11. I would like to say that this is the most informative web page that I have seen to date, and would like to encourage all of my fellow suffers out there. Hang in there....
I wanted to thank you for your web site. It is reassuring to know that other people are going through/have gone through this stuff too. I started having problems around thanksgiving of this year- really horrible attacks of abdominal pain, vomiting, bleeding, etc. I have always had intestinal problems, but after I kept getting sick over and over I went to see a GI. He was really puzzled, because although some of my symptoms made sense I had weird things too (like when I have an attack I get really bad hives all over). I had all kinds of tests done (colinectomy, endoscopy, etc, etc), and after what seemed like forever he finally diagnosed me with Crohns and gave me medicine. I started to feel better with the medicine, but it didn't last long. Now I have gone through several others, and I am doing a lot better now. But I still get sick (just once every other week as opposed to every day). My episodes are not as bad now, and they don't last as long. I want to keep taking this and not start Prednisone yet because I am afraid, and I think I might be getting better. But my doctor wants me to take them so hopefully I don't even get sick every other week and so that when I go to college next year things are under control. I don't know what to do. I was just recently given a diagnosis and medicines to try after months of nothing. It is all happening so fast. It is my senior year of high school and I have missed two thirds of some of my classes. I just don't know what to do or what to think.
Go back to April 1999
Return to Teens With Crohn's