From: KarenThanks 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. "BeenSick" 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: KarenI came upon your website by accident and was very impressed with it - I must
say I certainly wish this type of information was available when I was
diagnosed.
That was 23 years ago! - It was in the spring of 1978 I was 15. At
this time, there was not much information regarding Crohn's and often it was
misdiagnosed. I had been sick for about a year before they could finally
determine what was wrong. I look back at that time and really feel like I
was a guinea pig for the Doctors. They did every test imaginable, tried
many many different drugs and diets before figuring out what my problem was.
At 15 this is a terrible ordeal - at any age it would be.
Anyway - to make a very long story short. I spent many weeks in the
hospital every year from the age of 15 to 30. Finally they were unable to
treat my Crohn's
with medication and surgery was my only option. It has been 8 years now
since my surgery. I have not had any flare- ups nor been on any medication
since my
surgery.
I am sure we have all shared the same pains - physically and emotionally
Thank god for the knowledge that the medical world has gained and for support of
such websites as yours.
I read some of the stories about telling friends about Crohn's - well like I
said when I was in High School and very sick from Crohn's - no one knew anything
about it - or the seriousness of it - so when my friends found out what I had -
they all started calling me 'CROHNS' - They didn't do it to be cruel - we
actually had no idea how terrible it was - In fact when I graduated high school
in 1981 - 'CROHNS' was listed as my nickname in the yearbook - I know this
sounds awfull and insensitive - it really wasn't though - it was just ignorance.
From: BrandiMy sister Tiffani is 17 years old with Crohn's disease. I don't really know anything about because I just found out today. Like every brother and sister we have fought since we knew how to, but we have also always been there for each other. Our mother has multiple sclerosis, our father has re-married and has more children. Yes we have other brothers and sisters who are younger an 8 y/o, 6 y/o, 4 y/o, and 2 y/o. I'm the oldest, 18, but no matter what's happen in our lives we were ALWAYS together through everything. She has to have surgery soon I'm not sure when but I hope everything is ok. I would like it if people can pray for her and I will pray for everyone else's stories that I read any everyone who has to go through it. Thank you for listening, and God Bless EVERYONE!
From: HaleyIi am 18 years old, and have been diagnosed with Crohn's disease. My story is a little different than most. I didn't have any real symptoms, any of the normal ones anyway. No stomach pains, nothing like that. It happened suddenly one day, when I woke up that morning my side hurt, it hurt so bad I could barely walk. I called my mother at work, she worked at a doctors office in town, as the office manager. She told me to come up there, and that it sounded like it was the beginning of appendicitis. So I went up there, and I told her where it hurt, and she got me a doctors appointment at 1:00pm, and I sat there with her until then. When I went to the doctor's I explained everything to him, and he was very confused. He ran blood work, and x-rays, and gave me a pelvic exam. He came to the conclusion that I was having appendicitis. So they found me a surgeon and my mom drove me there, and we sat in a waiting area for about 2 hours. Finally I was talked to. They ran more blood work, took cat scans of my stomach area and intestines and all of that, and then gave me another pelvic exam. They thought it was either p.i.d or appendicitis. Finally the surgeon told me that he was going to take my appendix out, and I went in to surgery. The next morning I woke up, in a hospital bed, and had a huge gash in my lower right side of my stomach region. My mom told me that when the surgeon removed my appendix he found nothing wrong with it, and it didn't make sense. So he looked at my intestines and one was infected and swollen, as was my colon. No one there knew what could be wrong with me. The surgeon said that my intestine must have been perforated (had a hole in it), but I would have been throwing up and a lot sicker than I was, if that had been the case. Needless to say they sent me home a week later, with no answers and a lot of antibiotics. No sooner did I finish my antibiotics and had my wound heal a little, they called and told me I needed to come in for an colonoscopy. I didn't understand. The infection was gone, I was having no problems. Then a few days ago, I was called in to do more looking around inside me, and I was told I have Crohn's disease. They caught it early and before it actually began to give me any harsh problems, but they didn't know how to tell me what it was, all they could say was it will never go away. So here I am now, trying to figure out how I am going to live with this, and how to cope with the fact that I can no longer eat a cheeseburger, and all I know is that if I do, I will be in more pain than a prisoner of war, being tortured for information. That's my story, and my diagnosis date was October 10, 2001.
From: BRGI want to thank
you for this site. It really gave me the info that i had been searching for.
I have not been diagnosed yet, but my family thinks the news of Crohn's Disease
is coming. Over the past 6 months I have been becoming increasingly more
lactose intolerant and having reactions to things that don't even contain milk.
CD runs in my family and I seem to share many symptoms with my uncle, who I recently
spoke with, and who has had CD since my birth (guess I'm bad luck). I'm
now 16 and don't have not enjoyed putting myself on the diet of the blandest
foods known to man. It seems to be the only way to ease my stomach from
the pain you know and hate (its hard to concentrate on what a teacher is saying
when you feel like gauging your stomach out with a knife to make the pain go
away). My mom finally scheduled an upper GI series (for tomorrow morning)
when my stomach cramps had gotten so bad that I wasn't eating (very unlike me),
which made the cramps worse. well there is my pre-diagnosis story, im
sure! you have heard hundreds like it before but knowing that there are other
like me and that I'm not so weird after all really helps my self esteem.
Go back to August 2001
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