The Feedback and Experiences Page: October 1997
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 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. "BIGPICTURE362" 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: SD
Just wanted to let you know how much I enjoy the TWC page. It's been really helpful.
Hello, I'm a grandmother that is trying to find some teens with Crohn's to write my grandson as
pen pals. He was just diagnosed last Thursday with Crohn's. It looks like he will be having surgery
in 2 weeks. He is in an acute stage. He is very scared and in a lot of pain. He is not sleeping
very much either. He could use some friends. He isn't on the net. So it will have to be snail mail.
Please write me back if you can help. Then I will give you his home address. Thanks A very
worried Grandma Laura
From: Cedric
I just happened upon your site, and was happy to find it. I was diagnosed in January of 1987,
when I was 14 after a six month, three hospital ordeal. The thing that works for me is a brisk
walk. For some reason that relieves the intense pressure that accompany the stomach pains.
This is especially good for the time when the pain is especially unbearable. Keep of the good
work!!
From: Jack
I'm a Respiratory Therapist and I've been watching Crohn's cycles for years, like when the Asthma patients get worse at certain
time or just before a "front" of weather comes thru...
When my allergies act up, I would normally take over the counter decongestants until they
stopped working. So, I went to my family doctor, I explained the whole thing to him and also told
him I had Crohn's. So he prescribed Accolate. It is normally an asthma medicine but he said
that it would help my Crohn's and was a great decongestant. So those of you with bad allergies
might want to look into that.
I was very pleased, and relieved, to find your website. My son is nine years old and was just
diagnosed with Crohn's. He, of course, is very depressed and I am trying to find him resources
that he could use to feel better about the situation. Do you know of any websites that would be
suitable for a nine-year-old? I'd appreciate your thoughts.
HI, my name is Stijn and I'm 18 years old. I'm living in Belgium
(Brussels)
Last week, the doctors discovered that I have Crohn's...
My question is:
- Where can I come in contact with people who have the same illness?
Are there some e-mail addresses of people with Crohn's? (maybe in Belgium). Please write!
My nephew 12 years old is in Hospital now in Holland, to be exact in the town of Amersfoort
where he is being treated for the disease. He is not allowed to eat anything as yet and is being
fed through the nose with what is called 'Astronaut's food'. He is being treated with
Prednisone and is reacting well to the treatment as a whole. Bur he is hoping to be able to munch something
aside of pills quite soon. As Internet providers are not cheap in Holland and telephone bills are
extremely high, it is not too common yet to have Internet. My nephew does not have his own
address yet. But maybe someone of you teens with Crohn's will have some time to write to him
via my E-mail address and in the not too distant future he will be able to respond. I will
of course sent him the messages and when he is allowed to eat again I will download some of the recipes.
Some of them sound delicious, by the way. My nephew's name is Ruben.
So if there is anyone with tips or just a keep holding on message, send it to me.
I was diagnosed with Crohn's in 1989. Up until August of 1997 my Crohn's was easily tolerable
and progressing at a very slow rate. Three months prior (May), I had weaned myself off of
Asacol and was not taking any drug from May to August for my Crohn's...as per my GI. Then it
hit...August.....Extreme back spasms and lower right quadrant abdominal pain. Five days later
and out of the hospital....a new lease on life. I have been on Prednisone and Pentasa for two
months. I am working my way off of Prednisone (currently 20 mg.) and consume 4,000 mg./day
of Pentasa. I have to disagree with others that say Pentasa is nothing more than sugar in a
capsule. I was found to have a small hole in my bowel...this is what caused my extreme flare-
up.
Since being on both Prednisone and Pentasa, I have lived a much more normal life than ever
before. I hope to eliminate Prednisone from my diet. My GI is looking into putting me on 6-MP.
Would love to hear more about 6-MP before I make any decisions.
Hi,
My name is Mandy and I was diagnosed with Crohn's disease last July/97. I have had symptoms
since I was 15, I'm 20 now. I am really glad to have found these pages. They are really helpful.
I do not know much about the disease but with the help of these pages I am learning every day.
Please feel free to send me e-mail with any comments/questions. I would love to chat to
someone about this. I am in college, and for an English class we have been assigned a research paper on any subject
we choose. And since I am still curious for answers to my disease, I get to do the research on
the disease for my own sake as well as for a good grade on my paper! If anyone would mind
sharing comments with me please feel free to contact me. Thanks!
Hello,
I'm Theresa. I had Crohn's since March of 1997. I went through a lot.
Including an operation in June. I'm a 14 year old girl.
If you're having an operation or just wondering what an operation is like, don't worry about anything. People make a bigger deal than it really is. I came home from my operation and went to the carnival with my friends and went on the rides. I hope this makes you all feel better.
From: Therese
I have used this site often in the past year. My daughter has Crohn's and has an
unbelievable amount
of inner strength. All i can do, is sit up with her at times so at least she doesn't feel alone.
I really like this site and wanted someone to know. My daughter would not go to a support group,
but I will
print off so many comments and helpful suggestions and we have found a few recipes that we
can use. We do get
so tired of chicken and turkey. She is not really great about following her diet on her own, but we
all follow it with
her at home. I almost lost her until I found hope for her at the Cleveland Clinic. They are
wonderful, we take a very
long drive to get there, but it is worth it. Thank you for this site and for the articles that share so
my daughter
doesn't feel so alone with this.
From: Kim
I am so glad that this is on the Net. My son is 14 and has had Crohn's for about 4 1/2 years. He is going through a really bad time now. So I'm going to tell him about this. Maybe it will help him to realize he is not the only person who has this disease.
Hi. My roommate recently got rushed to the hospital because she had a
fainting/bleeding spell at the movies. I found out a few days later
that she was diagnosed with Crohn's. I don't know anything about the
disease and I would like to know what to expect since I am living w/
her. Write me back with info....Thanks!
Hello, I am A first year nursing student and have chosen Crohn's for a
report in A&P class. I understand very little about it and want to
understand the situation. My aunt who is a very special friend of mine has
this disease and is very sensitive to such questions. I would like to
submit a decent ten page report about the disease but from a very different
angle. Can you help me get started????
From: IR
I came across your homepage while doing some research on Crohn's. Two days ago, my niece
was diagnosed with Crohn's. She is 11 years old. Needless to say our knowledge of this disease
is very limited beyond hearing its name thrown around on Public Service Announcements on
television and radio. Your webpage is fantastic. I've printed off several pages of information.
This is all we can do at the moment. But it's more than that. It's critical she receive info but in a
way that she can relate to it. She can read it on her own. Lisa needs to know that she's not the
only one afflicted with this terrible disease and in this respect this information should be
invaluable. At the same time her parents as well as us (the extended family) can be educated. I
was touched by the stories that people have shared on this site. You are doing a good thing!
From: Trevor
Absolutely excellent page... I'm going top be reading this one for a while... Thanks for taking the time to make a difference. I know that sounds really corny, but it's true,
you are really helping people with your pages... I plan to be read through them all tonight and
have a rude awakening about my diet... :)
From: McKenzie
Hello,
I really love that you have put together a web page just for people who have Crohn's disease. It
has really helped me to realize that I'm not some weirdo, and I'm not alone. I was looking
through your Medications page and I notice that mine's not on there, it's called Azulfidine Entab.
It has really helped me. I'm glad that there is such a thing, it's not that strong
and I only have a
mild case of Crohn's so it'g great for me.
From: Anonymous
DON'T GIVE UP!!!!!! I was a teen with Crohn's for 10 long years. It came to the point that
surgery was the only option. It's been 12 years now since my surgery, and I have not taken any
medication since then. Before my surgery my doctor told me about the possibility of CD
returning, but he also told me he saw the best results when the patient had a positive attitude. I
hope you have the same experience!
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