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. "Ketchingup" 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 am a 15 yr old with Crohn's Disease. I was first diagnosed when I was about 10. I have been told I do not have it as bad as I could but I still have the occasional flare-up. For the first 3 yrs I was fine, after about 3 months on all kinds of drugs (including steroids) which made me puff up like a marshmallow. That was fun, ha. But just last summer I had a bad flare-up where I lost about 45 pounds. My doctor put me on a high dosage of Prednisone (steroids), a higher dosage of Pentasa (I had already been taking 12 a day), and a whole bunch of protein shakes. After about a month or so I had gained back the weight and was feeling fine, then I once again had another flare-up, lost 35 pounds and I am now taking 16 Pentasa, 8 Prednisone, 2 Prilosec, and 3 lactaid with any dairy product. In a week they want me to start taking a new pill 6MP. That kind of scared my mom a little b/c of all the long-term side effects that it may have. I am fine with it and am ready to start taking as soon as possible. The only bad thing about this new pill is that once a week for 4 weeks I have to get blood tests done and then every other week and then every other month and so on. The best thing about this new pill is that it will take me off my high dosage of Pentasa and down to only 1 1/2 pills of 6MP a day. I hope people read this e-mail and know that we are now able to fight this disease, soon i will barely ever notice it, I HOPE!!
I'm from Beverly Hills, California, and I was diagnosed in August of '98, before my freshman year at high school w/ Crohn's. I've had 4 major attacks (hospitalizations) of Crohn's in the past 2 years (totaling up to about 3 months), but I'm still holding on, and having my fun (partying/dancing and hanging out). I'm currently applying to go to UCLA and hope to be there as a Junior next FALL of '01!! Go BRUINS! AND ALL U CROHN'S patients hang in there and remember FAMILY IS #1
My name is Colleen and I am 16 years old. I was just recently diagnosed with Crohn's Disease. The doctor thinks it all started to go wrong after I had my appendix removed in 1998. I've been going on for 3 years with stomach pain, and one day in October I guess I set it off totally while I ate corn and salad, the two worst things I could eat!!! It's really scary, but I'm pulling through. I currently take Prednisone, Cipro, 6MP, and Protonix. So far I'm doing pretty good. My doctor tells me that there is a new drug out called Entocort. He is very excited. It's an 8-week treatment that is terrific, allegedly, for the small intestine portion of the disease, which I have. If all goes well, the only thing I need to be on is the 6mp for the rest of my life. So hopefully I'll be ok. I'm very glad you have this website up. It's MAJORLY helpful!!! Thank you very very very much for having this site!!! I love it!
My name is Elissa and I'm a 19 year old sophomore at Iowa State. I just wanted to let you know that I LOVE your page. Right now, the Drs aren't sure what's wrong with me. They don't know why my tummy hurts all the time. Reading your page has really helped me stay calm and not freak out totally...even though I'm scheduled for a barium x-ray on Friday. It's really helped me to know that I'm not a hypochondriac and that there are other people in the world who hurt for "unknown" reasons and that that I can be a normal college kid even with the hurt. I hope that I don't have Crohn's...IBS and a hiatial hernia are enough for the moment, but I just wanted to let you know how important your site has been to me in the past week and that there are people out there who know what an upper endoscopy is and how un-fun one is.
I was finally diagnosed July of 1998....after what seemed like forever! I lost 35 pounds and could barely stand up straight, all I wanted to do was rock back and forth in an attempt to stop the stomach pain. Nobody in my family has Crohn's Disease, though we think my grandmother most likely had it, but was never diagnosed. I'm now on Remicade (the miracle drug), Immuran, and Pentasa.....(thank god, I'm off the Prednisone!!). I find the hardest thing about having Crohn's, is the fact that socially, a disease like this is looked down upon so much! Nobody really understands, at least those who don't have it! I'm 23 now, and all my friends have just graduated college.....but I have only taken one semester. Before I was diagnosed, I was the social bunny....going out with the gang, staying up all night and living up my life. But that was before!!!! Last Sunday was a turning point for me, I attempted suicide....wow, I admitted it!!! I was just tired of being sick! and wanted my old life back....Thank God, I called my brother after taking the pills, b/c I'm still alive.....its not my time to go, its my time to fight this disease!!!! I'm seeing a counselor now, who specializes in Chronic Illnesses, she's made me see how I can change, and its possible!!! I have to keep on believing that. We all do!!!! This Website is great, I wish I had found it before yesterday!!!! Keep up the great work, and WE'RE NOT ALONE!!!!! I'd love to get emails.....
Hi my name is Kelsey, and I'm 11. I was diagnosed with ulcerative colitis when I was 5. Over the last 6 years they have tried me on several different medications that worked for a while and then I would flare-up a couple of weeks ago and the results came back showing it's moved from my large bowel to my small bowel. The biopsies came back negative for CD, but my doctor feels we should treat as if it is. So now I'm back on steroids which I'm not very happy about but if it makes me feel better than I would take it all the time if I had too. I'm also on a new medication that I started about a week ago called 6MP and I'm sort of nervous about it because I've never taken it before and I don't know what kind of side affects it will give me and how I will react to it. So they've got me on 4 different medications and a total of 16 pills a day. My mom found this website and I'm really excited about it because no one my age or anyone that I'm friends with has anything like it except my grandmother and don't really have anyone to talk to about it who would really understand what I mean. so I hope this gets some of the stress out of me. Hope to hear from someone soon.
I have recently been diagnosed with Crohn's Oct. 21, this year on a Sunday. It was actually kind of a funny story. You see, I'd been having pain since this spring, around my birthday, and I've been diagnosed with IBS and ulcers and being treated for both, and this Sunday before last, I had these most incredible pains to where I was crying out. I was taken to the doc. and almost blacked out twice there before I was rushed to the hospital for immediate surgery for my appendix?!?!?! which they did take out, along with a foot of my intestine when the found what I had. I've spent the last wk. in there and they let me out just Friday. but I can't carry large loads or even slightly heavy things for a while and I can't return to school for another 2-3 weeks because of the carrying thing I'm sure and in 2 days I'm going to have the staples in my stomach taken out-OUCHHHHH!!!!!!!! I am really NOT looking forward to that....
This is a great web site and I hope you always keep it going. I found this while doing a research paper for college and I'm sure my brother will love it and it will help him so much. Thank You!
After over a year and a half of inconclusive tests and nausea, vomiting and
25 pounds weight loss, my son was hospitalized with malnutrition and anemia for
9 days. They determined that they will treat it as Crohn's as nothing else makes
sense - his is in the duodenum area of the small intestine....Prednisone, 6MP,
TPN feedings and trying the SC Diet....things have been getting better. Have
you heard of Modulen by Nestle...just out in July - we have ordered it and it is
a supplement that is supposed to help Crohn's sufferers....he has been using
this week and it has flavor packets (he likes it plain though....). Supposedly
clinical trials has shown good results.
Go back to September/October 2001
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