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. "Over100K" 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 read your story...I am so impressed! Crohn's patients are some of the most caring people, your web site is great! My husband has had Crohn's for about 15 years (he is 43) and has been on every medication possible, and several surgeries. I appreciated so much your description of the "fog" of Prednisone. He talks of that often. He is now off of it (for about 2 years), but thinks some of the "fog" is permanent. Do you notice any of that, or were you not on the steroids very long? My husband is currently in the Centacor Drug year long study of the long term effects of Remicade. (He is also on 250 mg of Immuran a day, also.) It took about four monthly infusions for him to begin to feel anything. He just completed his seventh infusion and is doing the best he has ever done. For a long time he was 6'2" and 150 lbs. He is now up to 205 and for the first time ever is feeling well enough to exercise daily on a treadmill. He feels that is helping the mental "fog" that remains. He currently gets infusions every other month and can begin to feel a downhill trend about the 7th week. The doctors are talking like the Remicade may be a treatment he needs for the rest of his life to maintain him. It is both wonderful and scary at the same time, especially when you read of the possible long term effects, but for the first time in years he is enjoying life, especially eating!
I'm not technically a "teen" with Crohn's because I'm 21 but your page is the first useful, interesting one I've seen so far on this obnoxious disease! I was diagnosed in July 1996 and had my first major flare-up 9 weeks ago...I'm still in the hospital after SEVEN WEEKS! I've missed three-quarters of my senior year of college, but I WILL graduate May 22 if it kills me! I've been on IV feeding, liquid diet for weeks, etc etc. They finally tried Remicade and like you I had a pretty miraculous recovery this week. I am SUCH a fan of Remicade now. I may even get out of here Friday. I know from your page that you might be having trouble with Crohn's now so I hope you feel better soon too. Thanks for a great page. I'm looking forward to reading the recipes especially!
My name is Ari and my daughter (a wonderful girl - 17 years old) has Crohn's, and her diagnosis was fortunately on November 4, 1998. Fortunately because during exactly 93 days we visited around 10 different doctors, and at that time she was very bad. Now we can say that she lives well but taking many medicines every day. Congratulations for your site. It is wonderful and helpful.
I enjoyed reading the letters on your web page. Even though I am not a teenager, I suffer from Crohn's Disease. I was diagnosed with it after exploratory surgery on February 6th 1992. I was suffering from a lot of symptoms. When my doctor came into my hospital room and told me I had Crohn's, I said, "Okay" thinking that they had found it and that my symptoms was over. I had never heard of the disease and little did I know that it would be something I would have to deal with for the rest of my life. I had another surgery on February 7th 1995. Since then I have been on Pentasa, Asacol, Flagyl, went through three Remicade Infusions and I have been on Prednisone for a year, and I have been slowly tapering off of it. I have found that Crohn's disease can be a disease that affects your quality of life. I am married to a wonderful person who understands my disease and who supports me. Thank goodness, because there are so many people who do not understand the disease. Hopefully someday there will be a cure for it. For everyone suffering from this embarrassing disease, I want to tell them to hang in there, you are not alone.
I found your website while looking for recipes that are appropriate for people with Crohn's. I'm a 30 y/o hospital chaplain recently diagnosed with Crohn's and trying to adjust my diet accordingly. (I love dairy, so it's been frustrating to have to limit that.) I appreciate the work you've done on your website, which is helpful to adults like me, as well as teens. I'll look forward to trying some of your recipes. Thanks.
When I was 15 I was in a lot of pain and it took 6 to 7 months for them to find out what I had and I went to a doctor and he said it was all in my head how can it all be in my head! So one doctor said he would send me to a specialist and find out what I have and they found out that I have Crohn's and they put me on Prednisone for 6 months then they decided to operate and they removed two feet of my intestines and I feel a lot better and healthier and I hope I won't have to go through that pain for a long time or I hope they find a cure to it!!
I love your page and I finally don't feel like such a freak anymore, now I know there are others out there like me. This page has been a great source of information to me and I just want to have the chance to formally say THANK YOU.
This is just a short note to say thank you for your website. I've just been diagnosed and didn't really have a clue what it meant. Your pages have helped to see that there are loads of other people in the same situation. I suppose I'm technically not a teen because I'm 21 - but it started over 5 years ago, so does that count? Now you can add Scotland to your list of countries that you've had replies from!
I am 12 years old and I love your website. It has gotten my through a lot. Before I found it I felt like I was alone. But now I don't. so I just wanna thank you for thinking about others and taking the time to help us all
I have not been diagnosed with Crohn's but the doctors are starting related tests. I realize you are not a doctor, or a specialist but I need to get this out. A few weeks ago I woke up with this horrible pain on the right side of my abdomen. That day I went to see my family physician, thinking I had appendicitis. I got blood work down and my count was very, high...so I went to the ER. With a long wait and an examination they concluded that I had a lymph node infection, I took some antibiotics and some anti-inflammatory pain killers. That deadened the pain for a while, but five days after the pain spread to the left side as well. During this time I had (and still am) been running fevers. So I went to see my physician again, the second diagnoses was double ovarian cysts, or some bladder infection, but just to make sure I had to get an ultrasound. Nothing turned up on that, so again I went to see my physician. She asked if my family had a history of Crohn's disease, the answer is yes. So with the worsening of the pain, I'm going to get a full GI scan where I have to fast for twelve hours and drink some chalky liquid. I'm a very athletic person, and for the past weeks I have not been able to do the things I want because of the pain, but I find myself suffering from fatigue, I have insomnia, yet I sleep for about 16 hours every day. Plus I take home schooling, and this is just putting my behind my work. Anyways thanks for listening (reading).
Go back to March 2000
Go forward to May 2000
Return to Teens With Crohn's