The Feedback and Experiences Page: December 1997
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. "SClaus" 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!
I was diagnosed with CD 9 yrs ago, I was eight. I have a very severe case, presenting with
symptoms only seen in textbooks. The Crohn's has most recently been in my eyes causing an
actual ulceration on the eye (what you might see in your mouth but in the eyes). I first had
surgery four years ago in Feb, my doctor was performing a colonoscopy and perforated
my
colon. I had to have emergency surgery resulting in a colostomy. I had an awesome year
following that surgery, the only time I have ever been in complete remission (no symptoms or
medications). And then one day I woke up and felt lousy, you know how that is I'm sure. Two
years after my first surgery they decided to do surgery again and remove more of the diseased
colon and rectal stump. I currently still have enough of the area to one day hopefully be reattached. The problem that has presented itself now is that that area is the area inflamed. My
doctor also feels I have become immune to the steroids. I am currently talking 60mg IV
solumedrol and we still have not induced remission. I just spent 6 weeks in the hospital. We are
looking for any alternatives, I am trying to come up with some names of physicians
across the
US and even overseas that are known for their treatment and research with Crohn's
disease. That's where you can help. We are curious as to what other meds are out there as well as
different treatments. We don't want to try just anything though. We are currently looking into
traveling to Boston Children's Hospital and a physician there, he is internationally known for his
work on Crohn's Disease and Colitis. If you know of anyone or if your doctor has experience with
severe cases please include his number. We are willing to talk to anyone. Please also help me
put the word out. Thank you. P.S. I first visited your site when it was new and really enjoyed it. Now all I can say is that it is
nothing less than awesome. Thank you. :)
From: Laurie
Great page, I love it!!!!!
From: Robert
My Name is Robert and I live in Nuremberg/Germany.
I'm 22 Years "young" and i was first diagnosed at Summer ´97. I'm lucky to know your Website.
I think TWC is very interesting and helpful.
You are doing a great job.
Keep it going.
Greetings from Germany and a very Merry Christmas!
From: Mary Katherine
I think that this site is wonderful. I am a 19 year sophomore in college and was
diagnosed only one year ago. This helps me so much. Thanks!
From: Kathleen
I just wanted to say thanks for having the gumption and insight to start
this web page. I am 30 years old now but was diagnosed with UC at 12. If
only there had been the internet and ways for me to communicate with other
teens/kids about the illness, side-effects of medicine, ways to cope, etc.
I think that you have done a great thing by starting this page. Keep up
the good work. I am going to put you on my list of favorites.
From: Praggya
I was diagnosed last year with Crohn's at the age of 16. Thank you so much for having a site like this where other teens understand what I go through everyday. I didn't know that such a site existed but now that I do I am so excited.
WOW, I am so glad to of found your page! I've always felt so alone and like no one knew the
difficulty and pain we have to go through day by day with CD. Reading some of those other
experiences has made me realize that life could be a lot worse yet I still am pretty bad.
I'd love to share my story but I'm kina in the dark here, I don't know any of the
terminology or
'big words'. I'm finding I just sort of feel lost and do what my doctor & parents
suggest (even though
I don't quite follow the diet I should, oops). All I have to say is "I had the symptoms for about 4
months before I got up the courage to tell my parents anything. One day, after one week of hell,
I starting crying and just told my mom everything! The next day I went to the docter(sept'96)
then 1 week later I was being forced to drink this white, thick, chalky looking stuff that made
me gag at the sight of it, never the less the taste of it. That morning has been burned into my
memory for ever. The next day the doctor told my parents I had something called 'Crohn's'. Me &
my parents both had no clue what it was. So, well I guess you could say I was diagnosed
in
early October 1996.
A little over a year has gone by and nothings a whole lot better. I've been on Salowfalk,
Prednisone, been to specialists, therapeutic people, and on all kinds of vitamins. I haven't had
any of those awful surgeries but I've suffered through the excruciating pain, missing weeks of
school, losing friends, and just the loneliness of it all.
God! I could go on forever about my problems, it just feels so good to get all this out in the
open. If anyone wants to e-mail me, I'd love an e-mail buddy of any age.
From: Ryan
Four years ago I was diagnosed with Crohn's Disease. I experienced everything that is described
in this page accept the part with the friends because after being diagnosed I realized that I didn't
have any friends at all. I had no support from my so called "friends." All I got was abandonment.
Three months after the diagnosis I had two feet af the small bowel removed and half a foot of the
large bowel removed. I was OK for a bout six months after ward but I made my family think I was
OK for three years. That was the biggest mistake of my life. No the disease is back in full force
and Prednisone doesn't work for me so the doctors put me Immuran. Not a bad drug accept it
destroys your immune system. Also I can no longer go to school, which sucks because I was in
grade twelve. My final year. I can no longer play any sport at all due lack of energy and inability
to control my bowels. Well that is a BRIEF story of what I experienced. If you have time and
would like to here more just reply. P.S. It feels good to tell someone who understands.
From: Brooke
This is a neat webpage you have by the way =)
I guess I'll first start telling you about myself. My name is Brooke and I live in Michigan. I have
had UC for about 5 years. I have been hospitalized many times and doctors keep on telling me
about surgery. None of them tell me what to eat, so I find it wonderful to have a webpage that
I can refer to if I have any questions, thank you =)
From: Kelton
I am a senior in electrical engineering at Penn State University and graduate this December.
Currently, I am recovering from Crohn's disease. I was diagnosed in my junior year. As my junior
finals approached, I was losing 3 nights of sleep a week from the intestinal burning associated
with my attacks. My doctor couldn't even get his probe through the junction of my small and
large intestines (illiosecal valve) because it was so swollen. My doctor started me on Pentasa
which did nothing but make me tired and depressed. When he wanted to start me on
steroids, I
got a sinking feeling because I did not want to accept a life of drug dependency as the answer to
my condition. I didn't take any more drugs and had good success controlling my attacks using
the diet in Ellaine Gottschall's book (her daughter got it at 5 years old!). When I accidentally ate
the wrong foods, the next 18 hours were pure misery since darvocett no longer had much affect
on the pain. Four months ago I started on something called glyconutritional supplements. After 2
weeks I had an improved sense of well-being and decided to try pizza and doughnuts again after
not having any for a year. My system had healed from these supplements so I didn't have an
attack. Ever since I have been greatly expanding my diet with no ill effects and I feel more alert
than I've felt in years (helpful when writing a thesis on planar magnetic loudspeakers!). I urge
you to try glyconutrional supplements. A company called Mannatec has them in a product called
ambrotose. You will not be sorry. I certainly was not (my thesis is now done!).
From: Stephanie
Hi. My name is Stephanie and I am a registered dietitian in Miami, FL. I have been reading info
from your site now for about 4 months. I am doing research for a doctorate on kids and teens
with Crohn's disease. I do not have the disease myself but I am trying to find nutritional ways to
help teens and kids to live with the disease.
I am currently working on a paper just dealing with some the experiences you all have
mentioned. It will probably be published sometime next year. I will be referencing
you web page
as a source of my information. No names will be used just insight into what everyone feels.
What a great web site! Thank you!
From: Leslie
I think your page is great. I have had Crohn's for 16 years, so I've
been around the CD block many times. I found many useful pages within
your site. I wish you were around when I was first diagnosed. I don't
know who you are, but I am proud of you. Not many people, young or old,
would do for others what you have done.
From: Kandace
This is a very helpful page.
This sort of contact would be great for the daughter of a friend. This girl in her late teens has the disease.
Sadly, the family is not hooked up. They live in Gilroy, cA, not too far from
San Francisco, San
Jose etc.. Could you send me any info. I can pass on messages, but I think she, her mother
would prefer to get in contact themselves.
From: Amanda
I think this is great! I only found out that I had Crohn's 3 days
ago! I just got on the Internet to find out about it and I found this
page. It's very reassuring to find out that I'm not the only young
person with this disease. Thanks!
Go on to January 1998
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