Feedback and Experiences: November 1998
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 some 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. "TurkeyDay" 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 day or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
From: Donna
I was diagnosed in November 1994. At first the doctors misdiagnosed, telling me I had liver function failure. I was by myself when I got this news and it was a 1 1/2 hr ride home on public transportation. I held in my tears the whole way home. When I finally got there my parents were waiting for me. I broke them the news, trying to act as brave as possible. I started to cry when I told them. My dad told me not to worry, "You know Donna, If your Liver shuts down, we'll buy you a brand new one off the black market." Of course he was joking, but I instantly knew that I would not be fighting this battle alone (even though sometimes it does feel that way!). When the new tests results came in affirming the Crohn's, I
didn't take it so hard, knowing that someday, with help from friends, family and various support systems, I would come out on top!
From: Justin
I don't have any recipes or anything I just wanted to say Hi. My name is Justin, I am from BC Canada. I was diagnosed with Crohn's in december of 96. I have, since then been through every
possible test and experiment, and have been fed all kinds of medicine. I found your page very helpful and will return often.
I am a mom of a 13 year old girl with a (maybe) mild form of Crohn's. Since we are just starting down this road so many of you are also on, please give us a little more help. We have really enjoyed the files so far but we would like more basic info. In my reading so far I have not seen one spot to key into that has the stay aways, what to expects, and ideas for the new comers. One thing I would like to know is, Is there really such a thing as MILD FORM?, and will it get worse with time?
From: Tommy
I was diagnosed in Nov, 94. I was going to the doctor prior to that for what they thought was
appendicitis, after the fourth time going to the hospital they gave me all the test, they still couldn't see anything. They decided to go in and get my
appendix, once they where in they realized that my intestine was inflamed with Crohn's. I didn't know how to react so even know I still don't take it really cautiously, I don't even take medication, But the pain
is starting to return. Another thing that I realized is that more then half of the people that are in here are female.. "ODD"
From: MXZSpeed
I am 13 years old, I have had Crohn's for 3 years. I hate it. The pain in
the stomach is unreal. I am on Prednisone right now and 6MP. My
doctor has me under control pretty well! I lost 20lbs and looked like crap,
now I am the most I have ever been In 3 years. I just wanted to see what this was about,
got to go eat turkey!
From: Ivy Rose
Hi, my name is Danielle (but I go by Ivy Rose on the Web). I was diagnosed with Crohn's in April 1997, but had been suffering for over a year before that. My Dad also has Crohn's. I spent a lot of time feeling sorry for myself. I was put on Entocort (budesonide) right after my diag. and it helped a lot at first, then progressively less. It also made me very depressed. In September 1997, a new doctor added Flagyl and Cipro to my meds, which helped the Crohn's , but made me feel lousy otherwise (i.e no appetite, nausea, which doesn't help when you're already underweight. Around April of 98, I decided to move across Canada in September (from Toronto to Vancouver) with my boyfriend and attend culinary school (some would say an ironic choice considering dietary restrictions). I knew I couldn't afford meds on my own, and my parents had just lost their medical coverage. I was also sick of being sick. I was having much more pain than before, so my doctor upped my Flagyl and Cipro. At that time I was under 90lbs, 5'1", taking 1500mg of Flagyl and 3000mg of Cipro. I spent a week in bed and ate nothing but crackers and juice. I was so weak and nauseous I couldn't move. I did a lot of research, and talking to my doctor, and decided to have surgery. (my doctor later discovered I had a fistula and a sigmoid stricture which would have required surgery anyway). I had 1.5 feet of my small intestine
resectioned, as well as about 3" of sigmoid colon on August 25, 1998. I only spent 6 days in hospital (my surgeon was stunned) and six weeks after my surgery I was eating almost completely normally. I moved to BC on Oct. 12 1998. Now I can eat raw veggies, berries and NUTS! I still avoid popcorn (but Quaker's buttered popcorn
flavored rice cakes are a great substitute). I still worry that my Crohn's will come back. I get scared anytime I get the slightest pain, and I still get depressed sometimes when I look at the scar that runs halfway down my middle, but I try to stay positive. Thanks for letting me share, and BTW, this is a great website!
From: Sharon
I wrote before in December, 97 telling about myself but I have something new. I went to another doctor in New Orleans and he took me off all my medicine. In a few days I started feeling better. I ends up all I had at first was a stomach ache and the medicine the doctor gave me (Floxin) blistered my colon and gave me all the symptoms of
Crohn's. I feel almost 100% better. I still have a little stuff that hasn't healed yet. Like I can't drink carbonated drinks, but the point is don't lose hope. Keep checking to make sure it's not something else.
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