The Feedback and Experiences Page: April 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. "banips" 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: Roman

I'm 20 years old (going 21 in July) and I live in Israel. I was diagnosed with Crohn's 1.5 years ago, while serving in the army. Of course, I was almost immediately discharged, which was quite a shock, since we in Israel take pride in serving in the military (we have 3 years of mandatory service, I served exactly 11 months (almost 2 of them were tests and colonoscopies in hospitals). They wouldn't let me stay a day longer, even though I wanted), especially in fighting units (I was a designated marksman [1st place in the marksman course!] in mech. infantry battalion). Right now I'm in my first year in college - studying Law. And now to the point of this letter - even though I have a very light form of the disease and take only 3 pills (Rafassal - 5-Aminosalicylic acid 1gr.x3 times a day;) each day, it still gives me it's share of trouble, but after accidentally stumbling into your website I saw I'm definitely not the only one, and it made me see my situation in a different, brighter light. Also the opportunity to communicate with other Crohn's patients is a very good thing. Anyone who feels like talking is free and welcome to mail me. 
In conclusion, your website is simply excellent, and any praise would simply be an understatement! You're the best! Keep up the good work, because you bring
hope to a lot of people!

From: Jon

Hello my name is Jon.  I have Crohn's disease. I have had it for four years now.  I was to the point when I was diagnosed that I could barely do anything.  At the time all I could do was sleep much less function. The cramps and vomiting controlled my life. I had good days and bad days.  What I didn't realize was that I had the disease.  It is now my third time being put in the hospital for Crohn's disease.  I would go in feeling very bad and come out feeling good and just stop taking the meds.  I was on Pred and Pentasa.  I have been out of the hospital now going on a second week.  I  have strictures and still some cramping. I feel better now and I have energy again.  I didn't know this site existed maybe if I heard from other people that have it I would have realized that I am ok. Right now I am looking at either having surgery or trying the Remicade infusion again. It has been two years since I have had the drug, but as my Crohn's is active right now they cant do much with the Remicade.  It is nice to see that thee is a place for people with Crohn's disease to come and share there thoughts on something that can be very brutal on a person as I keep learning.

From: "Queentingler"

I sure am glad that I found your web site, I have a daughter with Crohn's, she was diagnosed back in 1998 she was 11 at the time, after months of different doctors telling me that it was all in her head, and doing the same tests over and over not finding anything We finally found a Doctor 70 miles away that diagnosed her right away, I thank god every day for him. My daughter has been doing really good now with the right medicines.

From: Alison

I got sick on Feb. 12 this year. I thought it was food poisoning at first, but the pain kept getting worse and worse and it settled down in my lower right side.  A couple weeks went by and the nurse at my university sent me to the emergency room because she thought I had appendicitis. I had just turned 21 and I was admitted to the hospital and they didn't know what was wrong with me. The doctors were guessing and administering all sorts of tests. After my colonoscopy, biopsies, and ALL my cat scans and barium follow-thru's (gotta love that barium) I was diagnosed when the results from the biopsies came in.. I got scared because the doctors in wanted to do surgery on me before they knew what was wrong with me. I went to Canada to get a second opinion. Since then I have been on so much medication.. and like everyone else.. I have the chipmunk cheeks and pimply face and the Prednisone has made me gain over 15 pounds in less than 2 weeks. I don't wish this disease on anyone!!! I still don't know how I got it since no one else on either side of my family has this or anything like this. They say it runs on family lines, well.. I hope no one else ever gets this! Thanks for spending time to make this website!

From: An

I'm An and I discovered I had Crohn's in 99, I'm from Belgium.  I had been sick since January 1999 and I was diagnosed in July.  From January till March it wasn't so bad, I had a lot of pain but I didn't loose any weight, but after this period...  I lost 40 pounds ( my mom was so mad at me, she thought I was an anorexic!!!) and after all the usual tests: colonoscopy, endoscopy,... I was diagnosed on July 27.  For one moment I was glad that I new what made me so ill, but then the doctor told me I couldn't go to Spain for two weeks and I stayed in the hospital for 3 weeks.  The nurses didn't allow me to go sit on the balcony, they said I might jump off!!  ( they probably thought I was a mental patient or something like that...)  When I got out of the hospital I was weak all summer (for example, when I tried to cross the road I was faster then my muscles allowed and I fell flat on my face, etc. ...) so my holidays were ruined completely.  Sometimes I'm better now but I think I'll have to wait and see what will happen.

From: Laura

I am a freshman in college and I was diagnosed with Crohn's disease my junior year of high school after tons of awful tests and 45 pounds of weight lost.  I am so glad that you have this website!  The best advise I can give people is to watch what you eat and to tell people about your disease.  My friends here have been really helpful to me.  They have even been helping me cook foods specific to my diet, which is hard.  Tell people with Crohn's to stay away from garlic, caffeine, tomato sauce, dairy products, and alcohol!  It is hard, but it will make life so much better.

From: Kent

I am not a teenager, but I have been living with Crohn's disease for 7 years. I am now 29 and I have learned a few tricks about living with a chronic illness. This past week I was hospitalized due to a flare and found your website.  This past visit to the hospital was the first time surgery was mentioned.  It looks like it is imminent.  We begin Remicade therapy this week, but it is only buying me some time before the illeostomy.  I appreciate the work you have done on your website. I have a very sensitive gut and most foods are a problem for me.  I have been trying some of the recipes on your website and find I can tolerate them,  Thank you for making them available.

From: Rosie

I'm a senior in high school and recently got diagnosed with Crohn's.  I inherited it from my mother.  I've recently had to quit sports because running was unbearable and prepping for college has been tough.   I was really nervous about going away and learning to live with this but your website has helped me so much.  I can't believe that people my age are going through the same thing.  Reading all this and making connections to my own life is so helpful.  Thank you. 


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