The Feedback and Experiences Page: April 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. JOE114 is not a complete address. I must also have the "@whereever.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 your help, and your mail.
From: Sara
I found this page while I was supposed to be gathering info for
an English paper. I'm so glad that I came across it.
I almost cried! :) I never realized there were other people out there
going through the same stuff I was.
I mean, I knew there were other people with Crohn's but.... Anyway I just
wanted to say this webpage is great and
Thank you for allowing me to hear your stories. Believe me, I've been
there!
Hello,
I am a 15 year old female in Oklahoma. I too have Crohn's Disease. I
found
out that I had it when I was nine years old. I have been living with it
ever
since. I have been though most of the same things as you, yet I have never
been on IV feeding. I have often wondered if many other teens live with
Crohn's as I do; now I have found a web page all about it. It makes me so
happy to see other can over come this problem just as I am learning to do.
I
would enjoy talking to you about some of the feelings you had during your
hard stages. If you would, please e-mail me back.
Thank you for your time,
Kimberly
From: Jason
Your page has been setup nicely and I think it is an excellent thing you
are
doing to help others. Keep up the good work for those who do good are some
day rewarded.
I was so excited to find this page! I know I'm not exactly a teen
anymore but I seem to relate better with this age group than the older
people w/ Crohn's. In the past 8 yrs. since I've been diagnosed, I haven't
been able to find anyone even remotely near my age with Crohn's, so I hope to
make many new friends here.
From: Tara
I have enjoyed this very much, but I would like to be able to ask
someone who might know the answer to this question. Do the side effects of
Prednisone effect the patient years after they have stopped taking it. I
took it for 3 months about 7 years ago. I am a 20 year old female from PEI,
Canada. Thank-you!
(Hey Tara! You didn't send your full e-mail address. Nobody can write to you without it! --Webmaster)
Hi. I am Beth, the doctors say that I might have Crohn's but
they're not sure. Reading all these letters makes me kind of scared. I feel
sorry for all of you that do have Crohn's and I want to let you know that I
will put you in my prayers; please pray for me, too. I don't want to seem
selfish but I really don't want to have Crohn's .I am 11 and in all the stories
I read everybody is older than me.
From: Brianna
I really enjoyed the page! I was interested how other teens are
dealing with the extreme pain caused by Crohn's disease. My gastrointerologist has refused to put me on pain meds, needless to say
causing many uncomfortable days and sleepless nights. Also, I am seeing that a lot
of teen girls (I'm 17 myself) are constantly being misdiagnosed with
anorexia and eating disorders. When I was first ill about a year ago, my
doctors were convinced that it was a psychological problem, when I
obviously knew that it was a physical disorder. Can anyone else share a
similar experience with me?
(Hey Brianna! You didn't send your full e-mail address. Nobody can write to you without it! --Webmaster)
From: Charnita
I just wanted to say a quick hello.
I am not a teen with Crohn's, but I am a 28 year old female !
I have Crohn's and found your page to be great.
You have made available a lot of great info. Thanks.
Hope you continue to do well... I read your story. Sounds familiar, but your attitude sounds terrific!
Here's to a great web site!
From: Olaf
Hi, I have Crohn's Disease myself, which is called "Morbus
Crohn" in German.
But when I read your internet-pages I was surprised about all the talking
about a "lactose free" diet.
Doctors usually told me to cut down on all kind of sugars and of cause food
that is hard to digest etc. So I really don't know much about lactose-free
products. This might be because I have been rather lucky so far (at the
moment I am getting along without the steroids, called "Cortison" in
German), or because German research/doctors are not as far advanced as the
Americans.
Also, I have the feeling that Crohn disease and Colitis ulcerosa is more
common in the States. Hardly anybody knows about it over here, even though
we have a self-help group in Hamburg.
Milk sugar or lactose is spelled the same way in German and pronounced similarly just a little bit slower. Like "LAACCTOOSEEE".
Free is "Frei", so you get "Lactose frei".
Accept that know one knows about it, there doesn't seem to be much
difference in living with Crohn/Ulcerosa in Germany.
Very carefully, I would claim that the habits of nutrition tend to be
healthier over here than in the States. I say that from my experience
living in Cleveland, OHIO for my senior year. It is very easy to get
"Bio-Food" that has not been chemically altered.
How can I get some Infos on the research that's being done on the
disease??? I have been trying to find something over here, but I failed.
I didn't check the other web-sites as yet, though.
Personally, my Crohn's aroused after having suffered from 2 weeks of extreme
mental stress, which i hadn't experienced before. I'd be curious whether
this was an initiator and whether other people have made similar
"initiator-"experiences.
Hi
My name is Jan. I'm a 16 year old boy from Germany and was diagnosed
with Crohn's in Dec. '94. I t was very shocking for me. I had had 3
month of diarrhea and nobody knew what to do. I had taken all kinds
of medication and finally I was transferred to the big hospital in
our city. It is one of the best in Germany with all kind of equipment
and the put me in one of these test tubes and x-ray my colon and put the
wire into my mouth to check to stomach. Then they did an ultrasound and
discovered my Crohn's Disease. It was horrible. I was and still am a
competitive swimmer. I used to practice at least 5 times a week. In
these three month a lost more and more musces which i haven't recovered
till today. My performance is constantly going down and I was very
depressed. I had to take a lot of Prednisone and still take it with some
breaks. I think your site is very good and it helped me a lot to read experiences
from other people, because the next group meets far away
from my home.
This year I took a big step and I'm an exchange student in the USA right
now. I'll be going home in June.
I was diagnosed with Crohn's when they did surgery to remove my
appendix. My appendix was the size of a large sausage and they removed it
along with a few inches on each size. I really did not have any symptoms
other than acute pain in that area. I take Asacol 2 times a day and I was
diagnosed in 9th grade, I am now a junior in high school. I have noticed lately that milk
irritates me, which I just found out on your webpage. I shouldn't have anyway. I was in ROTC
and planning to attend the US Naval Academy, but I feel that
I would be ineligible because of the Crohn's. I swim, play soccer, and am
on the crew team, and don't seem to have any problems except if I forget to
take my medicine, I will have rectal bleeding, but that has not happened in
a long time. Well, I guess that is all about me. I am a 17 year old
female.
My Mother has been living with Crohn's since before I was born,
but only found out after my birth, and a few years of emotional testing.
It seemed that nobody could diagnose her because it wasn't a common
disease, and now here I am finding a website devoted to it. When I was
about 10 or 11 we noticed the first symptoms of my lactose intolerance, and
now I am 19, and it seems that I too am following the path of my mother. I
haven't been in the hospital or anything like that yet, but I have experienced some tremendous pain. I want to learn as much as
possible to
help my mother, but also to help me so that I don't need to go through the
hell that she did.
I've written before, but I did not write about my whole
experience and
now I also have some important questions that I was wondering if anyone
could help me with. So I guess I will start from the beginning. I've
had severe stomach pains since I was 9 and I have taken a numerous
amounts of medications and I have had many procedures including
endoscopy. They have diagnosed me and misdiagnosed me with everything
the first thing was a hiatal hernia (which I do have) and then stress,
ulcers, appendicitis, ruptured ovarian cist, and anorexia all of which
I do not have. The summer of 1996 my stomach pains were bad so I
started controlling my diet. I Could barely eat anything I was 5'3
and weighed 86 pounds during the start of the school year my pains
were barely there I felt almost 100%, but people were worried about
my weight and speculated that I was starving myself. So I went to the
doctor and she put me on a high fat diet which mad me gain weight,
but started severe flair ups w/ my stomach. I was so sick I had to
have my gallbladder taken out. That helped for a while but the pains
were back and worse as ever. so now they thought I might have Crohn's or colitis. They did tons of tests but couldn't find it. so they
thought that it could have been hidden. So they did a cat scan. I
have not gotten the tests back. They have put me on all the same
medications as I have read on this page but they don't help that much.
I read on this page that they thought a kid had it and performed
surgery and did not find it and they cut them open for nothing. I
also read that it took people year's to find if they had Crohn's
and I was wondering what a stomach looked like that has it and
one that doesn't looks like? If my doctor said I could have hidden
blood and Crohn's might be hidden if the results of the cat scan
come back and they could not find any blood. could I still maybe
have it? Some other people wrote in it took years took find theirs and
one person never even had throwing up or hidden blood and finally
they finally actually said that she did have Crohn's. If finding it's
not an exact science like I have read in these stories how are they
going to ever now if I could have it. I mean could I wait in pain for
year's and then they finally say I do Have it when they could have
done surgery before? I really need some help w/ my questions so if
anyone can help me and my mom please E-mail me.
From: Meeta
Hi, I was diagnosed to be having the CD last year.
At last I know that I'm no the only one the world that has the dreaded
CD.
Your Page has been not only informative but also enriching
thank you.
From: Tony
My name is Tony, 31, male, diagnosed with CD Nov 95, nightmare city
before that. 2 feet shorter as of last July. Things are much better.
Anyhow, your web page is very informative, useful, and adds positively
to the web. Thanks a lot.
Dear friend,
I was glad to see your page and that over 4000 visitors came to share
experiences. I was a teenager with Crohn's. I am now 33 yers old and live a normal
professional life, far from my country ( Belgium ) of birth and family.
Since my 20th birthday I moved to study in Israel, and am now the factory
representative for a leading Israeli irrigation company in S-E Asia. I
never traveled so much in my life as I do today. Who could think about that
when I was sick about 20 years ago. I hope that those words will bring
some hope to those are still in a critical phase of the illness.
Regards,
Nathy - Indonesia
The feedback page is one of the coolest things I think that I
have
ever seen. There is so much information on the page that anyone would
understand it. One of the coolest things is that most all of the info
is from "real" people's point of view, instead of some doctor with a
bunch of information to put down. Also someone one who reads about someone
else's real experiences I think is more likely to understand
the nature of the disease than reading just some information from
some doctors notes. Anyway this page has helped me get in touch with
some other people to talk to. I think it can also encourage others
to try for best with "other people" of their kind
Hi, I really enjoyed your page. My daughter has Crohn's. She
has had trouble for 6 or 7 years. All the doctors told me it was in her
head.
She suffered terrible pain and I knew there was something so I keep taking
her to different doctors. Finally about 6 months ago we were sent to a
gasto. Last time she went he said that she might need surgery. I have been
really nervous about this. She's only 11. Too young to be having these
problems. She is taking prilosec, propulside and levsin but they don't
seem to help much. She had to go to the doctor today because her knees and
legs always hurt. He said it probably crohn's related arthritis. e wants
her gasto to run test when she back in a couple weeks. She does really
well with it. I'm very proud of her and how well she handles the pain. She
handles it a lot better than I do. Well thanks for the page.
Is there anybody out there besides me, that sometimes gets very strong
analgetics such as morphine, pethidine etc. Perhaps you might just get
codeine for your pain? What else do you take if you have very severe abdominal pains? Remember, that there are not two similar cases of
Crohn's and a few of us do have periods with so much pain, that it is
impossible to live without these terrible drugs. It is very frustrating
to be in a situation where it just seems unavoidable to use that kind of
medication to be able to survive. I want to hear about your experiences
with different kinds of drugs, and what you feel about using them, and
of course I'd be happy to share mine as well, if you wanna hear about it
:) I'd like to hear some opinions on that subject, if you please...
Beninu Nielsen, Denmark
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