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. "GB2_UB_GE" 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!
I am a 15 year old female in Alaska named Nicky. 2 weeks ago I started to
feel this strange pain in my lower stomach. I let it slide, thinking it was the
flu that goes around this time of year. But it kept getting worse and on the
Tuesday before last, I sat down on the stairs in the middle of my school and
cried like a baby because this annoying pain just wouldn't leave me alone, and
kept getting worse! So finally my dad (who thought I was
bluffing) decided I'd best go see my doctor. So I did! they ran like, 1,000,000
different tests on me and came to the conclusion that I had appendicitis, and
that I IMMEDIATELY needed to go into surgery to have my appendix removed from my
body. I freaked out, but you know, you gotta do what you gotta do, right? so I
went in and came out with no appendix. When I woke up from dream land, the
doctor told me the problem was not my appendix but my lower intestine! I had a
disease called Crohn's disease, and I was to stay in the hospital a week to
recuperate from surgery and take antibiotics and morphine through the IV in my
arm. I was very pissed off to find that I was missing a
part of my internal organs that I didn't have to be gone! And that is my
story...sorry it was so long... and your web site rocks!
I'm a Mother of a teen with Crohn's' disease. Actually he has been in the
hospital due to a flare up, and were given info on your site. it looks great!
keep up the good work and we will tell everyone about this site too, my son is
15 and has had Crohn's for 3 yrs. His name is Jake, I wish I had this kind of
info back then, but i have made it a point to learn all I can about this
disease. most people never heard of it, so I feel confined on who Jake and I can
talk to about it. when he gets home tomorrow, we'll cruise your site
together. Take care and its a great site!
I was diagnosed with Crohn's Disease on February 28, 1999. After a year of pain they did a colonoscopy and told me I had Crohn's. They put me on Asacol. Seven weeks later I was in the hospital about to die. They tested me for everything that they could this of. After about two weeks they realized that I was allergic to Asacol. The put me on Prednisone. Over the summer I stopped taking it and was having no pain; I was so excited. Then I started having a little bit of pain so I had to go back in for another colonoscopy and they told me that it had changed to Ulcerative Colitis. I was happy. Then I started having a whole lot pf pain and my immune system went way down. I got the chicken pox for the third time and a week later I was in the hospital. They said that I needed to have another colonoscopy, so I did. They then told me that my Crohn's was Crohn's again and was really bad. The Prednisone wasn't working at all anymore. They now have me on Immuran. I have to have my blood tested once a week for the first month and then once every three weeks for the next four months and then once a month for the rest of the time I am on the medicine. Who knows how long that will be. I have missed out on most of my Junior and Senior years. I miss being normal. I can't even have a normal life anymore. I have to be careful of every little thing and have pains all the time. It's really hard to deal with, but I know that God has a plan for me and this is part of it. I cry at night because no one understands what I'm going through. My Mom tried to help me, but she doesn't understand that I will never again have a normal teenage life. I'm supposed to go to college in the fall; what will happen there? What if something goes wrong and I miss college like I have high school? I don't know how much longer I can handle all this. It's just really hard. Thanks for listening. It means a lot and it helps a lot... more than anyone knows.
I just found out tonight my 14 year-old niece has Crohn's. Your page
really came in handy. I discovered a lot about the disease. Now I
hope I can help her deal with what she will face. Keep up the good work.
Hi, My name is Heather and I wanted to say that this page has been so grand
for me! It's an awesome page and keep up the good work! I'm doing a project on Crohn's
and without your site I would be in really bad shape! Also without your page I
would have gone crazy sometimes! It's hard to get my friends to understand what
I'm going through! In the hospital over Halloween no one called or came to see
me except one old friend and that I was grateful for! It was weird when I came
back because no one really cared about what had happened I was sad and
frustrated they didn't help me more in the hospital1 well thanks for this site!
My name is Lisa and I am from Canada, and I also Crohn's disease, I've had it
for about a year and a half and I found your neat page with lots of
helpful things! I do agree with the running part, i get tired very easily
because it seems as my legs give out, I get I run out of energy fast. This is
one thing that you have to stay clear of! Thanks for the great page!
I was having bowel pains for a few months and I was diagnosed with Crohn's in the summer of '99 in Canada. They didn't know much about the disease and I was immediately put on Prednisone. During that time I searched for a good gastrointerologist. Once it was discovered that the drug was not doing its job, my doctor recommended surgery for me. I was up for it and it's been a few months since a foot of intestine and one abscess was removed. I am feeling good. I am also scared of it returning and I don't think I'm leading a different life than before... If only I knew what I could do to prevent it from returning, I'd feel more secure.
I just recently discovered TWC and I love it! I haven't really been helped but I just wanted to thank you for creating this wonderful website. It has really cheered me up a lot to hear from people who have what I have, and can give people advice on things.
I've been on the Specific Carbohydrate Diet (outlined in Breaking the Vicious
Cycle by Elaine Gottschall) since I was diagnosed with CD in May, about 6
months. I can't say for certain whether it's working or not since I'm also
taking sulfasalazine, but for the last month I've been symptom free. Also, I
feel better in general than I have in a few years. The diet is hard to
follow, but so far the improvements have been worth it. Even when the CD was
active, the diet helped to mute the symptoms-less bloating and less frequent D.
I highly recommend it *in addition to* whatever your doctor prescribes.
You can find the book on Amazon.com:
http://www.amazon.com/exec/obidos/ASIN/0969276818/o/qid=943260644/sr=8-1/102-8502452-4412016
The author also has a website: http://www.scdiet.com/.
There's also a very busy mailing list for the diet- send an email to SCD-list-subscribe@longisland.com
to subscribe. Feel free to contact me if you'd like to hear more about my
experiences with the diet and CD.
My name is Sonya, 16 years old, and I have a bad Christmas story to
tell. Last year around December 14, I started getting really bad side
aches. I just thought it was the flu. Soon I couldn't keep anything
down and my parents thought I should go to the doctor just in case it was
another Crohn's attack, which I had had too many times already in the past.
I didn't think it was a Crohn's attack because my pains always felt different.
Anyways, we went to the hospital which is
two and a half hours away. There my doctor made me have a barium test
(ugh) and they discovered a fistula or hole growing in my intestine. My Crohn's
had never been this bad before. Because of this I had to get a nose tube
and stay off of food for a month. The day I got the barium test and nose tube
was the worst day of my life. I cried all that night when my parents had
to go home. Luckily I got out of the hospital on Christmas eve, but when I got
home all I could eat was liquid food through the stupid nose tube. I
couldn't eat any chocolates, or turkey stuffing which is my absolute favorite.
The only good thing was that the liquid nutrition going into me 24 hours a day
kept me full. I luckily wasn't starving for Christmas dinner. Well, this
year I plan to eat a lot of stuffing. Merry Christmas everyone!
I was looking for info for one of my friends kids and decided to visit teen
area. I'm not a teen anymore, just a 40 year old mom with four children (under
the age of 12). I wanted to let you know there is life after Crohn's. My
flare ups started in my early teens (rugged experience) and through my twenties.
(No surgery!! Many hospital visits.) Then quieted in my early
thirties and now am thrilled to say I haven't had too many problems. Still have
to watch the diet and stress( yoga and running are great). Friends still say
they hate me because I'm so slender. (They still don't understand) Reading all
the teens comments really brought back memories of being so sick. But, I'm
so glad they have this avenue for information and advice.
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