From: GaiaThanks 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. "back@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!
From: GaiaI am 13 years old and I was diagnosed with Crohn's disease in September of 2001. A month later, on Halloween, I was admitted to the hospital for surgery, because I had strictures in my small intestine (this is when the intestine is swollen very small and food has a really hard time getting through, and could lead to a blockage). To prepare me for surgery, I had to have a washout, which is very unpleasant and painful (I had to have it done twice because the nurses put the tube in wrong the first time) For me, that was the worst part. In surgery the next day, they took out 18 1/2 inches of my small intestine. When I woke up, I was in so much pain I was put on a morphine pump, and I cant remember the first few days after my surgery. I stayed in the hospital for 14 days, and after that I had to stay home for an extra month. I now have a big scar on my stomach, which makes me kind of self-conscious. What really bothered me was that I was in the hospital for my thirteenth birthday. Now, 9 months later, I am doing great and have no signs of Crohn's I am on the drug Pentasa and I am now gaining weight and growing, trying to make up for the growth I lost(4 years). I am just hoping that it doesn't relapse. I think that the surgery was definitely worth it!
From: EricaI am 18 years old and was diagnosed with fistulizing Crohn's disease three months ago. I believe I have had it for awhile but have experienced my first
flare this past May and it has lasted up until now. A month before I was diagnosed, I was feeling sick all the time and loosing weight constantly. I
was experiencing some abdominal pain that would come and go. I also had a lot of diarrhea. I always felt nauseas and could go days without eating. My
stomach constantly made gurgling noises which everyone heard. They thought I was starving myself and not eating because the sounds were so loud. It was a
struggle to make it through my last month of my senior year because I was so sick and dehydrated. The doctor mentioned endometriosis and suggested I see
a gynecologist. Then she suggested I see my GI again. I had already been tested for
Crohn's once before so I already had a GI doc. He put me on Flagyl thinking it was a parasite. I felt better for a couple days, then
started feeling really bad again. The next day (prom day), I woke up vomiting all over the place and could barely move. I made it to the
hospital after having to stop every 5 sec to throw up. They did CAT scans and a colonoscopy to find it was
Crohn's. They didn't do any surgery. They just kept me in the hospital for a week. Then the doctor put me on
Prednisone, Flagyl, and Pentasa. They helped some but as soon as I lowered my Prednisone
dosage the pains got really bad. While doing a barium test, they found that I had fistulas. The doctor suggested I take off my Fall
semester of college. We are now trying the Remicade treatments in hopes that it will heal the fistulas and I am still on
Prednisone, 6mp, and Flagyl. I've had one Remicade infusion so far and will have two more before they do
test to see if the surgery is the only other option. I'm just praying the Remicade
will work. I haven't felt a whole lot of difference in doing the first infusion but the doctor says sometimes it takes longer. I'm just ready
to get my life back on track because I've sat in the house or in the hospital the past three months. I'm down to 102 lbs and the doctor says if I get to
100, then I need to go back in the hospital. I think it's the malnutrition from the fistulas that explain my rapid weight loss. I have been eating and
drinking nutritional supplements but the weight just seems to disappear. In taking the medicines, I have experienced many of the side effects. The
doctor wants to get me off the Prednisone because that drug is making me go crazy. Everyone feel free to email me if you want to ask any questions or
offer any suggestions. It would be greatly appreciated.
From: StevenI am 12 years old. I first found out that I had CD at age 9 and the year was 1999. I was shocked to find that out. I was weak on energy and losing some weight. But, I was always a small sized boy. Then the doctor gave me Prednisone. After that I gain a whole lot of weight. They took me off of that in a short time. In my past I had 2 colonoscopy about 4 upper GI. And this time right now I am going to have surgery. The last upper GI I had proved that I have 4 to 6 narrowings in my small intestines. One narrowing was 90% closed. They are going to take about 3 feet of intestines out. When I get test done for CD, I can't drink any liquids. So when I had the upper GI they have to put a tube up my nose. So that was my experience and I am going to live life that god gave to me!
Return to Teens With Crohn's