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. "back@last" 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 14 years old and I was diagnosed with Crohn's Disease when I was 13, in December of 2002. I've done not a ton of tests but even to be sick of them. I've had to do: urine tests, stool tests, blood tests, and the scope. I've missed almost 20 days of school because of the pain I'm having. In fact I'm out of school sick because of Crohn's right now. I've been on 3 different meds, Pentasa, Purinethol, and a acid one I can't remember. I use to take 12 Pentasas a day, but now that I'm on Purinethol I take 1 Purinethol and 2 Pentasas a day. Next week (28th of May) I have to go back in for another scope :-|. My dad has Crohn's. He had a emergency surgery before I was born. He had a hole in his small intestine, I think he lost 3 ft of it. We almost lost him because of this.
I just found you website now (in a Google search) I really appreciate what you have put together :). I have had Crohn's since I was 11 (I am almost 17 now). I was diagnosed on my 11th birthday (i.e. I had the colonoscopy on my birthday!), and since I have had about 7-9 (I have lost the will to count) of them, a couple of bariums and other horrible stuff. When I first was diagnosed I went onto this milk based liquid diet (AL110), at first it was for 8 weeks with 4 weeks food reintroduction. This worked for a while, and then I was back relapsed, so I had the same thing but for half as long. This was again repeated. I managed to drink this stuff (like 3 liters) for all of the times). I have had steroids three or four times (MAJOR BREAKOUT :D) too. Since then I have had relapses every six months, so after two obstructions (Those where PAINFUL) I got Remicade. This kept me good for a year or so....and then guess what :D. I got it again, but the antibodies kicked in, and it wont work ! Now I am on a new drug, which is a trial (the name escapes me). I have had it two times, and the third infusion is on Monday. On Wednesday I have some public exams, and I don't feel too good....I don't think it is working !. Unfortunately the inflammation is spread all over, so surgery is not an option. Oh ya, I have also had a perianal tract and abscess, which likes to come up at the worst times :), and I have had surgery on that like twice. Thanks for listening to my ramblings :)
Great site, it's the best I've looked at for information. Hope your surgery
went well and you are on your way to feeling better.
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