The Feedback and Experiences Page: June 2000

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. "MGLBFL" 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 you help, and your mail!

From: Sabrina

I am  21 yrs. old and was diagnosed with Crohn's Disease on August 3,1999. I was 20 yrs . old at the time.  I had been experiencing stomach pains for about a year, and I lost a tremendous amount of weight before it became unbearable, around the end of July. The first time I went to the emergency room, I was told that I had Pelvic Inflammatory Disease, and had to get a unnecessary shot for it. ( I would love to punch the doctor that gave me that diagnosis!!!!) After a couple of weeks of only feeling worse, I went back to the emergency room but this time a different hospital, where all in one night I went through 3 pelvic exams, and 4 rectal exams and had to have my bladder filled with a tube and told that I had to hold my water until after a sonogram was done which took about an hour.  I have never had to pee so bad in my life.  Over the next couple of days I had to go through colonoscopies, barium x-rays and enemas, and I had to have a cyst removed from my left ovary. After being diagnosed and getting out of the hospital, I only got worse. When I went into the hospital I weighed 120lbs. ( before I got sick, I weighed 165lbs. ) I got out of the hospital on August 6, and 2 months later weighed 110lbs.  Thankfully in November I went into remission and was able to pig out for Thanksgiving. I have been feeling great ever since. I am currently on Pentasa, Zantac, and Folic acid. You know, today is the first time that I ever came across your website. I was looking for something else and there you where. I never imagined that there where so many people suffering from this disease and it is good to know that I am not alone.  I also realized that I could be a lot worse than what I am. I would like for you to post this on the Diagnosis Day section of your website if possible. I think it is important for us to share our experiences because we all know what each other is going through. Thank you for creating this site. It is good to know that we have a place to go when friends and family don't understand and can't help. 
                                                                                                         

From: Mandy

I'm 16 years old and I was just diagnosed with Crohn's disease maybe a week or so ago.  Anyway.. I was looking around on the web and found this page! It was great to read about other teens who have this disease.  I know this may sound stupid but I am pretty scared about it.  I know that i won't die from it or anything but having to deal with it really sucks ya know?  I'm very very weak right now and my doctor said that I should probably give up cheerleading for a year b/c I don't have any strength at all.   I have been showing signs of this disease for well over a year and a half.  The doctors kept telling me it was some stupid virus' and flu's stuff like that.  well about 3 weeks ago I got really sick and lost 15 lbs in like 2 weeks, I cannot keep anything down at all.  It stinks pretty bad.  My boyfriend is getting aggravated with me b/c I'm constantly feeling sick.  But I can't help it!  It just makes me feel so to know that there are other teens out there like me! =) 

From: Liz

I haven't been diagnosed with Crohn's...but they think that's what I have.  For the past year I have been getting bad stomach pains, cramps, food reactions, reflux, and sometimes very bad diarrhea.  I have lost about 15 lbs so far - not as bad as some people, but considering I'm 5'7" and used to weigh a slim total of 135 - 120 is a lot worse for me.  We've been through countless doctors and diagnoses, including Irritable Bowel Syndrome (they gave me Levsin (anti-spasmodic), needless to say it didn't work and sometimes made things worse), food allergies (17! yeah right!), and lots of viruses (haha).  My mother has ulcerative colitis. 
Basically, nothing has been getting resolved in my life and I just keep getting sicker and losing more weight.  Finally, we went to see a GI specialist.  He thinks I have Crohn's, and ordered a series of barium x-rays with small intestine follow-through, which was this morning (YUCKY, but survivable) and a colonoscopy (June 2nd).  So until the results, I'm definitely hanging as to what is wrong with me...I want it to have a name so badly.  I can hardly stand wondering anymore and having nothing resolved.  That's my story so far!  If anyone wants to e-mail me, you can reach me at america_true@hotmail.com.  It's a hard time right now, and as scared as I am about possibly having Crohn's, I just want to know.  And it's great to know there are people out there who understand what I'm going through.  Good luck!

From: Devin

About a year ago I was diagnosed with Crohn's disease. First it started with stomach cramps and diarrhea off and on and then the cramps and diarrhea were more persistent. So my doctor had me get an upper and lower G.I {a camera is placed down your throat and up the anus}. He discovered tiny ulcers called Crohn's in my large intestine. Then I was put on high doses of Prednisone for months at a time. After an up and down roller coaster of being sick and not being sick my doctor sent a blood test to a university and the test result came back showing no sign of Crohn's disease. Well the test was wrong and I was back to the roller coaster "up and down up and down". Then my parents decided we would change doctors. My new doctor is great. Ever since I have been with my new doctor things have really been progressing. Right now I am lowering my medicine and I should be off Prednisone by this summer. This disease has been really hard for me but I could not have gotten through it with out God.
 

From: Donna

I looked this illness up because a friend of mine has it.  I opened your web site and found a person that was able to look beyond the illness and help people.  I do not know you but I want to say that I am very proud of the way you are reaching out to others.

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