The Feedback and Experiences Page: May 2001

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. "TWriter" 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!

From: Stefanie

I just wanted to thank you for creating this page! I am 20, and I was diagnosed with Crohn's when I was eight (young, I know!). I am working at a pharmaceutical research company, and because it is digestive disease week, I have been learning a lot about Crohn's. However, your page and people's experiences have helped me more than any research has! I never told my profs about my disease because I thought they wouldn't know what it was and I didn't want to have to explain. I got all A's this semester, but because of attendance, I'm probably going to get mostly C's. It really sucks because I did so well, and to have my grades reduced for being sick is a shame. I never even thought about going to the disabilities office!!! I just read that on the experiences page, and I just wish i would have seen it at the beginning of this semester! I'm hoping that the office at my university will be as helpful to me as they were to them! I could really use an excuse for the classes that I'm going to miss when I'm sick, so I just wanted to say thanks because your page might have just saved my GPA!!

From: Tony

I was diagnosed with Crohn's when I was 18. I had surgery August 2000 to remove about 18 inches of the terminal ileum and about 7 inches of the descending colon. Wow, what a difference that made after I recovered. I was able to stop the Prednisone and only take Asacol. I started eating a normal diet again. A few months later I started feeling strange. That feeling like you are eating but the food isn't moving through your body. The Crohn's was active again. My doctor performed a colonoscopy and had to dilate one of the resections to open it up. I have since had to have another colonoscopy after I was admitted to the emergency room for a bowel obstruction. We don't know if it was from the stricture or from adhesions. I am back on Prednisone, (Oh what fun!) but I am doing ok. If I knew before the surgery what I know now of the outcome, I would have still chose to do the surgery. My general health has been elevated. I have more energy and much less discomfort. There are days I feel that nothing is wrong.

From: Melissa

Hi, my name is Melissa and I am 15 years old. I just found out I had Crohn's disease about a month ago. I had gone about a year w/ the pain and the doctors didn't know what it was and then about, well, a month ago they diagnosed me w/ it. They didn't tell me very much about it. When I went back to the doctor they told me to go on the internet and find out about it. If it weren't for you site I probably still wouldn't know about it. Thank you so much! It has helped a lot!! I just wanted to say how good of a site it is. Thanks a lot.

From: Erin

I'm athletic, healthy and I have Crohn's Disease. I was just diagnosed on May 4, 2001 here in Athens, Greece. No one knew that it would turn out to be Crohn's Disease. The doctors listed it as a 20 percent possibility. They thought I had appendicitis, cause they pressed on that area and it really hurt! I have always been in good health, hey I'm an athlete. I only had a pain in my stomach for a month, I hadn't had it my whole life. But when the lab results were returned, they said Crohn's Disease, yet my mom still doesn't believe. Heck, I don't either. But I think I can handle taking a couple of pills every day of my life, I don't want it to hold me back.