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. "Coily1012" 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!
I just visited your website for the first time in about a year. I was diagnosed with colitis and probably Crohn's (the doctor still isn't sure) in April of 98. I ended up missing the entire month of April during my senior of high school and scattered days before and after that. At some point though I had to decide to get well and forget about school for a little while even though I was an extremely dedicated student. I just wanted to let you know that I am truly impressed with what you have set up here. I have been relatively free of symptoms since a few months after I went on Prednisone and Asacol after being diagnosed. I still take 6 Asacol/day and sometimes take bentyl for stomach cramping, but I have not had a major flare-up so far. I have finished one year of college and hadn't realized how lucky I had been until I saw my doctor for a check-up over this past Christmas break. He asked me how things were going, and I said fairly well. I have my days when I don't feel well and have missed classes but for the most part am okay. He asked if I had had to schedule my classes at certain times of the day because I might not feel well after eating or whatever. Well sometimes I don't feel well after eating, but I have never considered scheduling my classes around it. It made me think that even though sometimes I think I have it pretty bad, others have it much worse. Exam week is quite an experience and can send my to the bathroom more times than imaginable, but it is tolerable. It was scary at first leaving my family only a few months after being diagnosed but my roommate understood and helped out. I read that you will be going to college soon, and I truly believe you will do wonderful. I tend to let myself get stressed out too often but am working on it and have learned at some point to but the books down and not let it consume my life. I am proud to say I made it through my first year with a 4.0 but Crohn's has taught me that there is more to life. If you don't have your health, then you don't have much else. I am trying to now live my life to the fullest when I am healthy, and when I am sick to take the time to get well before trying to handle the stress and pressure of the outside world. It scares me to think that I could have a flare-up at any moment, but I refuse to let it control my life. I wanted to wish you the best as you get ready for college. It will be a wonderful time in your life. Get the education you are going for but don't let the work load drive you crazy.
I wish this site or information was available in 1984 when at 22, I was diagnosed with CD. I lost 55 pounds, experienced pain, no appetite, couldn't hold anything down and the pain on my parents face watching me literally fade away. During this time I was seeing a Internist who knew I had some kind of colitis but did not know until that fateful day of 4/4/82 when I had exploratory surgery. I went through the normal drug treatment of Prednisone and azulfadine for several years with checkups and lower GIs. By 1984, I had gained most of my strength back and weighed about 155. In November, I had something that led me to the college infirmary for a doctors visit. He gave me a shot of Lincosyn. It gave me diarrhea six weeks or more. I feel that this caused me to come out of remission and by January 1985, I was exhibiting symptoms After going to my hometown internist he suggested I see a GI specialist. I did and went back on the same old therapy of Prednisone. I eventually was up to 60 mg a day to keep the pain away. Problem was I could not come off of it. After a year of trying to kick the need my doctor suggested surgery. Well after Exploratory and a subsequent surgical hernia, I was not keen on that idea. I sought after another opinion and found a GI Specialist who had had good experience with Immuran and Flagyl to bring someone off of Prednisone. It worked. I was able to reduce my dependence very slowly. He cut me on at 2.5 and 5 mg at a time. By the time I was off of Prednisone I had already been through some of the symptoms of Moon Face and the scarring of stretch marks. A special thing happened to me in 1987 along with my treatment. I was prayed over with the laying of hands and was healed of all symptoms. Since the conclusion of my drug treatment by 1988, I have never experienced problems since. Sure I am still lactose intolerant (which by the way led me to this site since I was looking for a dairy free ice cream recipe) but I do not have it anymore. I do believe in the power of prayer as a force in my healing. I tell you this because I have read many of the testimonies. There is hope and life at the end of the road. I pray each day that there is a cure and preventative medicines to help those with CD and other critical diseases. Please relate to all that if they are not getting the results from there Dr. to find another one who stays on top of new intervention therapies. I did and with God's touch I am OK today.
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