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. "stillback@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 found out that I had Crohn's on April 10th, 2002 after an emergency surgery. I was going to be having a minor surgery to have fluid drained from what the doctors thought was cysts in my ovaries. During surgery, they saw that there was fluids leaking all in my stomach. 18 inches of my small intestine was removed and also my appendix. I was not aware of any of this until the anesthesia from surgery wore off. I woke up in the recovery room to be told that I had just had a major operation and that I had Crohn's. I was in the hospital for a week, and I have been back twice since then. Once because of a minor flare up and only for one night, and the other time my stomach went to sleep, putting me back in the hospital for another week. The doctor said that sometimes happens after surgery. I am just now, after 2 months getting my life somewhat back to normal. I was forced to miss a month of work and also to drop the college classes I was taking. My email is JejaLopez22@aol.com if anyone wants to write.
I am nineteen years old and was diagnosed with Crohn's disease when I was seventeen. I was actually diagnosed on my seventeenth birthday. I was in High School still when I had sharp pains in my stomach. I left school after throwing up the acid in my stomach. I don't even remember getting home and climbing into bed. My dad then drove me to the closest Emergency Room. When I was there they took blood and couldn't figure anything out so they automatically thought it was appendicitis. The doctors then wanted to transfer me to a hospital to possibly have surgery. I was scared to death because I was terrified of needles let alone going into surgery. When they told me that I would be riding in an ambulance I also got upset because I thought that I was ok. I have been sick for many years before this and I always blew it off. So my mother drove me to the hospital, that night I have surgery. Which to find out in the morning that they found flare ups in the large intestine. I was so devastated because my mom has been suffering from Crohn's from as far back as I can remember and she was always sick. I think that worst thing for me was that I now was different from all my friends. They were all naive and they didn't understand. I was always a cheerleader and ran with the same crowd for years. I now was set apart. I started to heal then I got sick again late in my senior year. I then took Remicade, which didn't change my health at all. I had three infusions the last two made me so sick that I might not chance it now if I was able to take it again. I moved away for college in the summer of '01. One week, one week after I moved out of state I got so sick. I had the most severe pains that I couldn't deal with them, and to remind you I tried to ignore the pain most of the time. But this time I couldn't. I had a block in my large intestine that wasn't allowing any digested food through. So this meant that I hadn't digested any food for a total of three days so I was starting to get weak. I couldn't eat anything. I was taking Vicodine for the pain, I took my last pill and threw it up every where. Have any of you ever done that, it is disgusting. So I had to travel back to Colorado (where I am from), from Nebraska (where I am attending college) in all this pain. I got to the point I couldn't sleep, couldn't eat, and couldn't sit in a comfortable position. Once I got to Colorado my mom slept for two hours then it was to the ER we went. I was put on all kinds of medications. I then had surgery three days later. I had 18' of large intestine removed and half of my colon removed. I had a lot done over the period of two weeks in the hospital. I know that you all understand what I am talking about but I have been through a lot and I have not found the strength to tell everyone about my experiences yet. I know that I still feel sick everyday and I am now some what getting adjusted. I have had the same boyfriend for the past year and I have not yet told him. I do a pretty good job of hiding it. Well that is my story, not in great detail but the most I am willing to remember. I think that everyone is amazing that they can just some out and talk about it. I want to say that because of everything thing that I have been through and all the time I spent in the hospital. I am now majoring in nursing. Thank you for reading my story.
I would like to share my story with ulcerative colitis. I was diagnosed in the summer of 1986, at the age of six. I began to have frequent use of the bathroom. My stomach would hurt so bad that I could not eat or the smell of food would make me very ill and have to use the restroom. I began loosing weight quickly and had completely stopped growing. I was sent to a specialist in Rochester, where I lived at the time. She sent me for colonoscopy and a barium enema. I did not take to the tests at all. I remember feeling only at the time and very angry for what was going on with me. I developed behavioral problems and was sent to a psychologist. she only made matters worse and I did not and would not cooperate with her. Meanwhile I was prescribed enemas and Azulfidine. The drugs helped me , although I was still suffering from some symptoms. Iws put on a very restrictive diet which helped as well, although some of the symptoms still lingered. In 1989 my family had had enough of the weather and we also had heard that people with IBD do better in warmer climates. I now reside in Atlanta and have made remarkable improvements. I am almost symptom free and only take a small dose of Azulfindine a day . I eat anything I want to. I give credit to a wonderful doctor and the warm climate for my improvements. I know for a fact that stress was a big trigger in the symptoms in my colitis as well. My stress levels have decreased since I moved to the south. Unfortunately, now I suffer from an eating disorder which I believe came from such a restrictive diet for such a long time and the fact that things were out of control for a lengthy period of my childhood. I am working through it with my wonderful therapist and I struggle with it currently. I do feel truly blessed because I know every one is not as lucky as I have been.
I am 16 years old. I was told that I had Crohn's in Nov. of 2001 after my uncle died. the doctors said it was probably because of the stress. I went through my whole Christmas break sick. I didn't even feel like opening my presents. I went into the hospital in Jan. and I stayed there for 2 weeks. The doctors told my mom that there was really nothing else they could do, I had lost 22 pounds in 2 weeks which was a lot for me and I was so bad that I couldn't eat anything I couldn't even suck on ice. Then the doctors decided to use Remicade. The next day after the infusion the bleeding stopped and I began to recover. a week later I went home. Now I am doing much better the infusions have changed my life. I get them every month. Last night I had my first swim meet with Crohn's and I won my events. I want everyone to know that it can get better. I went from almost being medicated to Boston to almost normal.
Hi, my name is Lauren and I am 16 years old and I was diagnosed with Crohn's in 2001. After many tests and doctors and diagnoses I am finally better. I am currently on Prednisone, 6mp, Celexa, Concerta, Aleese and some natural pills. Ever since I was a young kid I always had stomach pains but everyone thought I was just making it up even the doctors did! In March of 2000 I started having painful stomach pains that were constant so I went to the doctor and they thought I had appendicitis so I went to the ER because they were going to do surgery and the doc there said it was just gastritis. I went to a GI doctor after my pains would not go away and I had a colonoscopy!=( I missed a lot of school so I failed the 8th grade. The doctor did not know what was wrong with me so I went to another doctor and he said I had Crohn's so I was in a flare and he gave me Remicade and that made me worse. I was in the hospital for a while and none of my friends came to see me which upset me! I went to a new doctor and he put me back on track. I was constantly in and out of the ER for new symptoms. Last summer I had a flare so I was in the hospital and I also had CDIFF (or something like that) so my doc put me on Prednisone and I gained a lot of weight. I was never skinny but not fat.. but most people with Crohn's are really skinny but Prednisone made me gain a lot of weight and get "moon face". I also was put on Immuran but it made me really sick and I started throwing up Bile or Vile or whatever so he put me on 6mp. My mom has been giving me these natural pills that really have helped me. My boyfriend also has Crohn's Disease so it is great to have someone who understands but my friends have not been there for me through this but I found out that they were not really friends. I am now at a new school and I am doing well. I have had about 5 colonoscopies and 3 endoscopies and a lot of MRI's, CAT scans, Those barium tests and other tests. It is really hard to think "wow I have a disease" but I don't let it get me down ... I think at least I don't have Cancer! I have now lost the weight I gained and feeling better! I just would like to hear other peoples experiences and talk to someone who knows what I am going through. I know that I want to be a GI nurse and work with kids with Crohn's and stuff. These past few years are a blur to me as I cannot remember anything and I left out a lot of details but I think I blocked out a lot of things. I have been in the hospital only about 5 times and I hope I don't have to go back! I have a lot of joint pains and back problems I don't know if that has to do with Crohn's but I think the joint pains do. I just know they will find a cure! My " friends " still have nothing to do with me because well I don't know why but I am fine without them! I would love to talk with anyone and hear your stories! Does anyone else's parents' freak out every time you have an ache or pain? Because my mom does!!!! Thanks for reading my story!
My name is Desiree and I just wanted to thank you so much for your website. I was finally diagnosed with Crohn's Disease after spending a week in the hospital because I just thought I had the flu and found out I instead had a kidney infection, a urinary tract infection, gall stones, and an abcess from my intestine being so inflamed. I was diagnosed a month later after I had a colonoscopy. After several more visits to the ER and seeing a dermatologist because I have Pyroderma Gangrenosome (pretty common with Crohn's Disease). And then seeing my GI doctor every week. I think I am finally feeling somewhat better. I am taking 20 pills a day and then whatever I need for pain on top of that. It has been so hard and finding your website on accident has helped me so much. Everyone says I will feel better soon. But reading other peoples experience made me feel that I am not alone. Which is a huge comfort in my life right now. I know I have a long tough road ahead but I also know I have God on my side and your website to give me encouragement. Thank you for your time.
My name's Kim. I was diagnosed when I was in the fourth grade, around 1996-97. It was extremely tough for me. Not only was the blood,
diarrhea a problem, but the painful abdominal pains that I was going through only topped my list off that year. Ya know, I'm 15 now and should be a pro and taking my medicine religiously yet I'm not. I don't know whether that makes me
naive or just plain stupid but, oh hell. I don't know. I only know how tough it's been for me around my peers because in my mind I'm different from the other girls. They just don't know what's going through my body and my mind on a daily basis. I beg of you out there who are just getting diagnosed with Crohn's Disease, TAKE YOUR MEDICATION! DON'T NOT TAKE IT! IT'S SO VITAL TO YOUR HEALTH YOU WOULDN'T BELIEVE! I know I'm being a
hypocrite in saying this, but just take your medication and if you forget double! up on it if you can! I'm doing better and coping with what's going on in my life and other such things. But Crohn's disease won't get better if the person who has it doesn't make the effort to help it along a little. Just take your medication, and if you're having trouble just email me.
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