Feedback and Experiences: February 1998
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 some 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. "PSOCIA" 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: "Coolade20"
Some where around September of 97' I started having sever stomach cramping, and loose stools. I really didn't think anything of it. Until 2 months passed by
and the symptoms got even worse. When I finally went to the doctor I had lost
about 25 lbs.
and was living on Jell-O. The doctor's couldn't figure out what was wrong with
me at first. It was very frustrating not knowing what was wrong. And my work
wasn't to happy with me either. I had to miss a lot of work because it hurt to
walk.
I had to go through a lot of gross tests. They finally diagnosed me with
Crohn's at the end of November, and started me on Prednisone, and Asacol. As
far as I am concerned Prednisone is one of the worse drugs ever. I started on
40mg a day witch I think was way to much. I am almost off of it now, and I
can't wait to get back to normal. I was getting tired of people asking me why
my face was swollen. And in 2 months time I went from 103 lbs. to 136 lbs.. Witch
caused some problems with me and my boyfriend.
I am noticing that I am having lower back pain now, do you think that that is
from the Prednisone? I was also getting severe charlie horses in my legs and
hands it was kind of worrying me. Well thank you for this web site it has
helped me a lot.
The doctors did not tell me to much about this illness.
From: Katie E.
I am 17 years old and I was diagnosed with CD in July of 97'. I had been suffering with almost all the symptoms for four years prior to this. They said I had everything but what it really was (CD). My doctor finally decided to refer me to a GI specialist. After having a scope done, they found over 50 ulcers on my illeum and inflammation throughout. The GI doctor basically said you have CD, here is your medicine, good bye (I have a new doctor now). Being very confused and unaware of what it was, I read the pamphlets she gave me and I realized this was forever and I became very scared. I am currently on several medications ( they can't find anything that works). After almost 5 years. of pain I am ready to wake up one morning and say " I feel good. Today is a good day." I just got the Internet and through reading your web page I have been a lot more hopeful. Thank you!
I need to know more about receiving TPN through a central line infusion. Please help me.
I'm so glad to finally find people who share my experiences and who are my own age. I was recently diagnosed with CD, I've had my ups and downs. I've been in the hospital near surgery but I made it out without it. I'm on Prednisone and 6-MP. I have been on Asacol and Pentasa as well. I'm 18 and I wonder what the years ahead have to bring but now that I've found support I think I'll be alright.
Hi! I just found your website last night and it is very helpful to me. I am a teenager with CD. I don't handle things very well and this is hard for
me. I have had 2 surgeries I have been in the hospital 3 times. I'm not going to graduate on time from high school cause I was sick so many times and missed school. I'm not trying to put a guilt trip on me but I hate having this. I worry about everything in the world all the problems. I worry that I am going to die. I get tired very easy I hate taking the pills. I found out I had CD 2 1/2 years ago but the surgeon said I could of had it for 6 years before
that. When I was 15 I weighed 63 pounds they put me in a place where people try to kill themselves and eating disorders cause they said I had an eating disorder. The first night I was up all night
screaming and crying cause my stomach hurt so bad they gave me a heating pad and
aspirin. They put me on prozac for my depression, they would follow me to the bathroom to make sure I was not
puking. A week later I had surgery. It took the doctors 8 months to think I had and
eating disorder and to put me in the hospital. I don't like to think about my problem and I
usually don't but I just got out of the hospital again on Feb.14,1998 and I am sick of
getting sick and going in the hospital and missing school. I'm not going to graduate
with my best friend because I was sick. I get so depressed but I have a really good friend but he don't know anything about what is wrong with me but he puts a smile on my face and he makes me laugh. I love him for that he tells me I should watch what I eat and drink. He knows I can't drink
a lot of caffeine and he yells at me when I don't take my pills cause he don't want me back in the hospital. He is the only one who came and saw me in the hospital the last time. I would like to hear from you and other people so I have someone to talk to.
From: Nick
Hello. I just came around your web site. It's excellent. I'm glad to know that's there's other teens on the net that are going through what I am.
Hi, I'm Nick. I was officially diagnosed today, February 16th, 1998. They originally
thought I had Celiac disease, but after an Endoscopy, a Barium X-Ray and 4 painful months of waiting I finaly got the diagnosis today. Over the last year and a half I lost 80lbs and haven't grown. I'm going to be 15th on the 27th of
February. I was real sick over the summer and had to stay home and could never go out and do anything. I got some medication today (not
Prednisone some other stuff) and the doctor said I should feel better real soon. I'm a little upset... it's still a shock. The good thing is that they said I have to stay
totally stress free, and since my birthday is coming soon I may be able to squander a
vacation to my grand-parents place in Florida (since I live in Canada). Hehehehe :) Gotta have some good come outta it :) Keep up the good work. I'm sure you're making many teens feel a lot better.
From: Pol
To be honest I'm a bit old for this page. I've had Crohn's for 10 years.
One of my biggest problems initially was getting information, even out of my British doctors. I think it's great that you have set up this source of information for your fellow Crohnies (sic). It's more interesting and informing than the more medical sites.
From: Brigette
This page has been very helpful for me. Even though I don't have
Crohn's Disease, it's because one day at a bowling tournament I friend
my friend who has CD what she wasn't allowed to eat. She only remembered
a few things like dairy products and peanuts the rest she couldn't
remember, naturally I was curious! I've read books on CD, but they
didn't say the foods that were dangerous to eat. So I decided to go on
the internet and I stumbled on your web page it's answered many of my
questions which is good because I think I'm starting to get on her nerves!
From: Bob
I was fascinated to read about you in the Saturday, February 7 edition of my
local newspaper.
Congratulations on your web site...quite impressive to say the least.
I am 57 years old and have Crohn's disease as does my 27 year old son. Having done volunteer
work for many years in nursing homes I am able to put my disease in its proper perspective.
After watching so many people die of "real serious" diseases I realized long ago that my
disease, while quite discomforting in many ways, is not something I'm going to complain about.
No martyrdom on my part, just the realization that others are far worse off than I am...at least I
won't die of my disease. Your efforts and web site will help others come to this same
conclusion. It is a marvelous thing you are doing...keep up the great work.
Your site is book marked and will be checked regularly.
Enjoy your life; others will be better off because you are there.
From: Mike
My name is Mike. I read your article in the Local section of the area
newspaper. I am
19 yrs. old, and I was diagnosed with Crohn's Disease AND Ulcerative Colitis
in 1990 (11 yrs. old.) Unlike others, I have done surprisingly well. At first when diagnosed in
1990, I was 54 lbs. when my classmates (5th grade) were around 80-90 lbs. I was immediately
put into the hospital (Arnold Palmer Hospital), got the Prednisone and other meds. and was in for
about 1 week. 6 months later I was back again with an inflammation and again it was for about 1
week. Again, 6 months later (it ALWAYS has inflammations during winter or summer vacation
from school, so I don't miss any.....odd huh?) I was back in A.P. hosp. then it was 1 year later for
1 week (it is ALWAYS for 5-8 days) than again, 1 year later. Then 2 years. Now,
I don't even
remember the last time I was in. It is probably about 2-3 years.
Presently I am 130 lbs and gaining weight rapidly (for us with these "gifts") I don't have much of
a diet per say. I eat just about anything and everything without pills to help me (no lactaid or
anything like that). I just Do Not drink milk straight. but I do eat everything else w/ milk in it and
have NO PROBLEMS. Currently I am on a medicine called MEGACE (ask your doctor about it).
It is a medicine that is mainly for women w/ breast cancer, BUT it has a side effect of APPETITE
INDUCING!!!!!! I take 4 pills of those a day (2-morning, 2- evening) and I am ALWAYS hungry.
even when I am full, I want more, but know that I can't hold anymore in. It has helped me gain
about 20 lbs in about 4-5 months.
Being a student sometimes wears teens with this problem out alone, then some of them have
jobs that wear them out even more. I have been employed at Publix for about 3 1/2 years
working between 20-35 hrs a week, going to school full time, stay active in after school clubs
(was in 7 clubs my senior year of high school) and did other extra curricular activities. I took
gymnastics (which I always wanted to do) until I ran low on $, and I took voice lessons for about 2
years, just starting to run low on $, so I just stopped. I am also a member of Atlantic Nautilus.
AND, I am a Peer Educator (Peer Councilor) with Crosswinds Youth Services. My doctor and
mom tell me that I do TOO MUCH and need to CUT BACK. Instead, I PUSH FORWARD!!! I
think of myself being normal and healthy and do NOT want ANY drawbacks to leading a normal
healthy life. I WON'T allow any!!!
you know, sometimes at work it makes me sick mentally. I mean, I have these 2 chronic "gifts"
(<---thinking positive) and I have called in sick only about 3 times in the past 3 1/2 years that
I have been working there, and there are employees w/o med problems who call in sick about
once a month or every other month. that gets me frustrated.
The meds. that I am currently on (if you want to ask your doctor about any, my doctor is Dr.
David Baily) are: Pentasa, Prilosec, Immuran, & megace. I am FINALLY off Prednisone. I have
been off for about 1 year now and doing good. I have waited for 7 years to get off it and will NOT
get back on unless it is literally a matter of life and death!!!
From: Norm W.
Congrats on your most recent award. You can be awfully proud. I can't imagine the amount of
work you put in to creating your page. The results must be very gratifying to you. Actually being
part of helping other people is where it's at. Great job. Keep up your good work.
From: CCFA
Congrats on your award and keep up the good work!
From: Jen
I wanted to write to you to tell you what a terrific job you have done with this web-site. I currently
am taking care of a teen ager in the hospital newly diagnosed with Crohn's and look forward to
sharing this address with her. Keep up the good work !!!
From: Dr. Peter Balsam, M.D.
Congratulations on your award!
From: Robert C.
I just checked your WEB page. To have a page this OUTSTANDING, you would have to be 30 or 40 years old and have 10 to 20
years experience on the net.
You have done a fantastic job creating this web page and deserve even more awards for the
help you have given others.
Keep up the good work.
From: Rabbi B. Friedman
I read the article in the paper today about your home page, so I just went to it. It's
TERRIFIC! You've helped a huge number of people by running the page and you deserve all the
accolades you are getting.
From: Don
Keep up the great work. I'm 68, and was initially diagnosed with Chronic Regional Ileitis in
December of 1963. I had 3 and 1/2 feet of Ileum removed in September of 1967, and another 2
and 1/2 feet in March of 1989.
My name is Jenny and I live in Muncie, Indiana. I guess I'm a little old to be writing; I'm 26 and
I've had Crohn's for 16 years, so I guess you can figure out I got sick when I was 10. This is one
of the best websites I have found. I definitely know what everyone in their teens is going
through because I have definitely been there. I remember being in the fifth grade and barely
weighing 50 lbs. and then suddenly I have this fat chipmunk face. Kids were very cruel about
that, but by 6th grade, I was off Prednisone and back to being thin but looking healthy.
I just had my first surgery last June and I have mixed feelings about having it done. Just about
the time I was feeling pretty normal, I began to have really bad diarrhea 10 times or more a day
and was really scared to go back to the doctor. I let this go on for about 5 weeks, then decided I
couldn't take it anymore. It turned out I had bile in my colon and the doctor prescribed a powder
that I have to eat 2 times a day in applesauce or I can drink it in orange juice, but I gag really
easy when I drink stuff, so I eat the applesauce. I feel pretty good now most of the time, but
when I get tired of eating applesauce I get sick again. So, I've cut it back to once a day and that
has helped.
The only medication I am on is Asacol and an iron supplement. I've really been looking into fish
oil and have decided to start on it. I have also started taking an herb called Cat's Claw 3 times a
day with my meals. I've had this disease for as long as I can remember and I'm to the point now
where I am willing to try just about anything to see if it will make me feel any better then I do
now. I also will do about anything to stay off Prednisone. I've been on it way, way, way too many
times and I am really worried about the long term side effects it will have on my body. I'm still
very young and will have this disease a long time.
Did you say you are going to Europe? You are very brave. Just last year I really started to feel
nervous about traveling or going to places where there are crowds. I worry about having to go to
the bathroom. Last year I was at a monster truck show and was seated in the middle of the row
with ten people on either side of me and I kept having to go to the bathroom. I made myself so
nervous that I missed the entire show and ended up sick in the bathroom the whole time. I am
getting a little better about it though. Last weekend my boyfriend and I went to a hockey game
and we had aisle seats, so I was OK. He knows I won't go unless we sit on the aisle. As far as
traveling, that makes me more nervous than anything. Sometimes I know I bring it on myself; I
end up making myself sick because I am nervous. But 16 years of wondering if I'll be sick is a
long time, and I think it's taking its toll on me. I don't have enough days in a row that I feel good
to be confident that when I travel or go out I won't be sick. Hopefully, with time that will go away
and I will fell less nervous. Like I said, I didn't feel this way until last year before my surgery..
Well, thanks for listening. When I was growing up,
I didn't know anyone that had Crohn's, and we sure didn't
have the Internet then. I feel a lot better since
I know I'm not the only person with CD. The
Internet helps a lot; I'm on it at work a lot looking
at Crohn's things. I think I have felt more positive since I had the chance
to read other stories.
From: Kendra
I am a teenager with Crohn's disease. I was diagnosed when I was 12 years old. I am glad there
is a web page that is devoted to Crohn's. I didn't think many teenagers had the disease. This
page has given me a new sense of hope that I am not the only person suffering from this
disease. It showed me that Crohn's doesnt have to run my life and that I can go on being a
normal teenager.
From: Tara
I found this great website a couple of days ago and I was so excited since my family just got the
Internet. I found out I had Crohn's in October of '96, then 15, after a few wonderful tests and a
bummer of a summer. -Smile-
I'm still struggling to get into "remission". Will it ever come? This site is so great though, and I
commend you. It's great to actually read about people who feel and understand what we're all
going through. My specialist in Hamilton, Ontario, is a two hour drive from where I live, and
even the doctor's around here are just learning about what IBD cases are. Thanks, I'm glad to
know there are people out there when I need them.
From: Shaina
I think this page is great!! I looked for it when I was diagnosed a month ago, at the age of 19.
The only person I knew who had Crohn's is my cousin's neighbor, and she is so sickly that I got
very scared. She is on tube feeding all the time and is stick-thin! When I found your page I was
much relieved to read that that is not the way it has to be! Thanks for the support your page
gives me.
From: Theresa
I have recently been diagnosed with CD and, while trying to educate myself
about the disease, ran across your website. I find it to be very informative
and uplifting. I have been ill for about a year and a half and have lost about
110 pounds. I have been on B-12 injections for a while and was initially thought
to have pernicious anemia, but the weight loss continued too quickly and I was
sent to a gastro-doctor for a colonoscopy and finally diagnosed with CD. I
have
been on Asacol for about a week and I will have the barium x-rays next week.
Your web site has given me a hopeful outlook on my illness and some pointers
on coping with the symptoms and depression. It has been very hard to explain
to others the severity of my "stomach aches". Thank you for the humor links
and recipes. I feel a lot better knowing that I am not alone and that I will
get better. Thank you again for such a great website!
From: Katie
I was diagnosed with Crohn's last November. I have recently
Got access to the web and was really pleased to find your Website.
The information is really great and its good to know I am not alone
with Crohn's. I have also told the people I was in hospital with about
your website.
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