The Feedback and Experiences Page: September 1997
Thanks to everyone who has been sending me their experiences and comments about the page. It's really nice to know that someone is 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, 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. "GOLDENEYE007" 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!
Although I am about 12 years past my teen years, I think this page is great!!
I have had Crohn's Disease for 14 years and have been through four operations and
have spent enough time in hospitals and around GI doctors to qualify
for my medical license!! I just wanted to say, I wish I had this
kind of information available to me when I was diagnosed with this disease.
Keep up the good work!! I now have a beautiful 2 year old and I hope
and pray every day that he does not inherit this dreadful disease. Just wanted to say keep up the good work
and your web site looks great!
Hi! I was diagnosed about a week ago and I already can't stand Ensure but
Carnation Instant Breakfast is alright. I would really love to meet people through this page so
feel free to put me on pen-pal lists!
I have Crohn's Disease and I would like to chat with someone. I have never talked to anyone
besides my doctor about it so maybe we could talk or we could have more chatting times!
Thanks!
I am the mother of a 9 year old. She was diagnosed with Crohn's in July 1997.
She had "stomach aches" for most of the school year with very acute pain in June. We were
very fortunate to find a great pediatric GI doctor who diagnosed her disease. It has been rough
going at times. It is only the 4th week of school and she has missed 5 days of school so far. Her
tummy hurts a lot. Her Crohn's is in her ileum so she has appendicitis like attacks. She wants to
know what she can do for the PAIN? Pain meds do not help. Any suggestions??
She is on Asacol 6 pills a day and a low residue diet. I think your page is great. Thank you for creating and maintaining it.
I am 9 years old. I was diagnosed with Crohn's in the Ileum July 1997.
For many months my mom did not listen to my complaints of pain. She thought I just had
stomach aches. I had my tonsils out in January, developed asthma in March and acute stomach
pain in June. They thought I had appendicitis. I missed 38 days of school. I have a great GI
doctor at Children's Hospital. She has helped me feel a little better, but my side still hurts
a lot sometimes. It hurts a lot today. I stayed home from school. What can I do to make the pain go
away. My doctor says to take Tylenol. That doesn't help. I am taking 6 Asacol
a day plus am on
a low residue diet. The doctor wants to put me on Prednisone next. I don't want that. I just want
to feel better. Do you have any ideas??
From: M.A. McManus
Great site!! I am a parent of a pre-teen with uc. I am always searching for new information. You
have done a tremendous job of pulling all this together.
I can't tell you how happy I was to find your web-site today. I'm not a teenager, but have a
11year old son with Crohn's. I really need to be able to support him in the very best way that I
can. He is going through a really tough time right now. THANKS.
From: Giovanni
Hi!
I am the father of a thirteen year old boy who has been diagnosed with Crohn's. I was touched
by your report, and I am going to have my boy read it.
I was especially interested in knowing your "reaction" to 6-MP. What side-effects you may have
experienced? My boy may have to take it as well.
His mother and I are a little worried about the impact and danger of this drug on him...I'm sure
your mom and dad were equally worried for you.
Regards,
Giovanni Vidotto
P.S. I hope they find a cure for this affliction soon. May the Lord bless you.
Go on to October 1997
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