The Feedback and Experiences Page: October 1999

Thanks to everyone who has been sending me their experiences and comments about the website. It's been quite a year! 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. "Btrl8" 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: Lauren

I wanted to commend you on your dedication to providing information to otherwise clueless people.  It must be very scary to be diagnosed with a disease which you know nothing about.  I'm sure your site gives hope, promise and determination to sufferers of Crohn's Disease. 

From: Luke

I was told that I had Crohn's just this year in June and I was pretty pissed off because I went to see a doctor and she told me to take a quickeze but a wee while later I went to the hospital and they told me.  At the start of August I had to have an operation and they took out 28 centimeters off my bowel and they took out my appendix.  I couldn't move for a while and the doctors reckoned I shouldn't do much sport and stuff but I didn't listen and I was tackling and wrestling in no time and I felt really good. But there is a good thing for me having Crohn's Disease because I don't have to the things I don't like at school like athletics because I don't have to run or anything.  Any way thanks for putting a website for people with Crohn's.

From: Tina

I was 16  when I first had symptoms of CD.  My family kept saying it was either in my head or just hemorrhoids [because I kept seeing blood,
if they only knew] so I was 18 before I could get to a doctor. At that time my symptoms were really mild so it took a long time to get a proper
diagnosis. to make a long story short I am now 25 I've taken almost every medicine you can name. I have been fortunate
and not had surgery yet. But, I have severe scarring from all the steroids, in some places it actually looks like someone used a jagged knife and ripped my skin wide open from stretch marks caused by the swelling.] I just want to say that  through all this I have also been blessed with a loving husband and I now have a beautiful 14mo. old son and I want to say this because so many times I felt that I just couldn't fight this disease anymore
but it just goes to show there are brighter days after all the dark cloudy ones go by. Positive minds will bring positive results.  Thank You!
Your site is a blessing in disguise.     

From Sylvie:

My son was diagnosed with Ulcerative Colitis in 1998.  He spent the winter in hospital.  Had it all. 8 Blood transfusions.  Reaction to 2 of them.  Had a spinal tap. A blood clot to his brain.  Results, severe headaches. They discovered an opening to his left vertebrae.  He was nose tube fed the
works.  Results, had his colon removed.  He will be 14 in March of the year 2000.  On November 30, he is going to have J-Pouch surgery to have his stoma re-attached to his rectum.  Pretty scary stuff.  Have read everything I can find on this procedure.  Have even been in contact with a 14 year old from the states who has had this procedure done this past summer. He was great help to me understanding what to expect and whether is will be worth it.  My next project is to find out about foods that make you go and foods that don't.  He will be on medication to harden his stool to slow down trips to bathroom.  Have you any idea as to where I can find info on diet he should be on. He is now on the I want to be on his diet, diet (ha ha).  He is on a high fat diet.  Mostly so he can grow again and gain.  He still looks like he is 9 yrs old. Any help would be great.  


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