The Feedback and Experiences Page: June 2001

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. "Lab2048" 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: Eli

This is a wonderful, wonderful page. I am a 3rd year medical student who was just diagnosed with Crohn's after (surprise, surprise) years of misdiagnosis. Here's the interesting part: the person who diagnosed me was my ophthalmologist, who (thankfully) recognized that I had anterior Uveitis and counseled me on the possible causes, including Crohn's. I've met almost no one with Crohn's who has manifestations outside of intestinal disease.

From: Ava

I was diagnosed with Crohn's disease June 13, 2001. I too had severe stomach pains, nausea after every meal and vomiting. I have lost a total of 40 pounds in the last 4 months. I'm happy to finally find out what's wrong so I don't have to try to explain that my pain is sincere and that I'm not just anorexic or seeking attention. Before this, I had never heard of CD, so I am eager to learn about new developments or just from someone who would like to share their experiences with me.

From: Ivette

I was diagnosed with Crohn's Disease on February 8th of 2001. I was sad at first but now I feel like a whole new person. I have so many friends online with the same problem. In a way it is sooo cool. I'm being treated and everything. I feel great. So if anyone wants to talk feel free to e-mail me. Thanks to Crohn's I've learned to be a better person and much nicer and I'm learning to live my life better.

From: Dianna

By the end of August, 2000, a summer's worth of occasional stomach pain culminated in one night doubled over on the floor in the worst pain of my life. My pediatrician thought it was the flu, but when my 102 fever didn't go away, it was time for blood tests, x-rays, CT scans, GI series (YUCK! strawberry flavoring really doesn't help!) after all that, and three doctors, Crohn's was the consensus. I was put on 30 pills a day (including 16 Prednisone, 12 Pentasa, 1 1/2 6MP, and 3 metrodiasole) Prednisone made me really depressed, and gave me the ever-popular "Prednisone cheeks." The GI showed fistulas in my small intestine, and gave the idea that I have had the disease possibly for a few years without knowing it. After having a bad reaction to 6mp, I was begun on Remicade. I have since gone for 5 treatments (one every 8 weeks) My next is Wednesday. So far, things have been great. My strength and stamina aren't what they used to be, but I have been relatively symptom free, and am now in remission. If anyone wants to write, I'd love to make some friends going through the same kind of things.

From: Cassey

I am really excited about the Teens with Crohn's disease page you have created. I discovered it a few years ago and have been checking up on it regularly ever since. As I was searching the web for a page like this, I honestly didn't think that there would be one. I mean I never really thought that anyone cared about teens with Crohn's, but I guess you do! So, I just realized that it is time to share my experiences with others.... maybe they can help someone.

My Diagnosis: I was diagnosed with Crohn's disease about six years ago. I am seventeen years old now and I consider myself very blessed. I had symptoms like swollen ankles, huge loss of appetite (which caused massive weight loss), chronic stomach pain, low grade fever, and the worst: diarrhea six months before the doctors found out what it was. I went through five different ones and answers from the stomach flu to Lupus, and finally I was recommended to LeBonuer Children's Hospital in Memphis, TN. They did a colonoscopy (not bothering to put me to sleep for it) and found out that I had Crohn's. Then, I didn't understand the meaning.. I actually associated it with the chicken pox. I just thought that it would go away in a month or so with medication, but it didn't. I just recently visited the Mayo clinic, and have gone into what I and my doctor calls complete remission. It may not last forever, but I have been well (with no surgeries ever) for three months straight and basically for a whole year (with only two big flare ups). I thank God for what he has given me!

From: Julie

I want to thank you for your page. It's great to see people getting together and forming their own "support group". I just wanted to suggest that when I initially got sick I tried to stay in touch with my body. Warm soups and saltine crackers (without the salt as well) worked wonders for me. I'd never wanted to eat a can of cream of mushroom soup before but I still consider it a wonder drug. When nothing else helps, I just get into bed and under a lot of blankets. I'm sold on staying warm. I know that when it is cold outside my body starts reacting adversely. I'm 21 now and have had Crohn's since I was a freshman in college (though it took them until two days after my 20th birthday to diagnose me).

From: Michelle

Hi, I just wanted to say that this website is a great idea. I was diagnosed in 1988. I was 15 years old. I had 3 operations where they took out parts of my ileum and large intestine. I had an ileostomy for 1 year and found that very hard. I am now 28 years old and expecting my first child in July. I have been without any problems for 4 years now due mainly to the new medication given to me "6MP" or 6 Mercaptopurine. There's hope!

From: Judson

My name is Judson and I am 19, every time I start feeling down about my disease I go to your web site. This last year was my first year in college and it was a little tough. I did way to much. I bought a house, played on the college golf team, worked 30 hours a week, went to school and sometimes slept. But I guess this next year will be ready. I had my 14 Remicade treatment this week and I feel better right when I step out of the hospital.