The Feedback and Experiences Page: March 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! 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.
My son, who is 16 now has had UC since he was 12. His doctors
want him
to have a colectomy, and the J-Pouch done. His one love in life is
baseball. He is having a hard time dealing with the thought of surgery
doesn't even want to talk about it, especially with me. I don't know
what to do... how to get him to talk with me about it... any suggestions?
Is there any teenager out there who has had this done... that could tell
me how it has affected their life? I really need some input on this!
Thank you so much... A worried Mom...
Hi! My name is Jamie, 3 years ago I was diagnosed with Crohn's disease.
They tried 6 months of Prednisone and about ten other drugs to help
control it and said they just weren't working. Next it was time for
surgery...they were supposed to take out 8 inches of my small intestine
and part of my colon. When they opened me up they said they found
nothing and decided that maybe I really didn't have Crohn's...What they
decided I had I don't know. The thing is, is that I'm 19 years old and
unsure of really what is wrong...the bad thing is is that I have a scar
from the surgery that wasn't even necessary and again unsure of exactly
what it is that I have again. What should I do?...The pain is still
there, but after finding nothing when opening me up no doctors are sure
what to call it.
I am 15 years old. I was diagnosed with Crohn's Disease about a
year and a half ago in 8th grade (Oct96) Prior years I suffered from acute reoccurring
abdominal pains that lasted anywhere from 30 seconds to 3 minutes. I
never really threw up or had blood in my stool. Doctors just said it was
stress. Finally, my mom took me to a regular check up with my doc and a
conversation about my height came up. (I was about 4'7") My doc referred me
to a endocrinologist (growth doc) and he took a history. He then referred
me to a gastro. (Oh, ya..years before I went to a gastro {6th grade} and he
did a rectal exam so I didn't come back therefore not finding out about my Crohn's) But at this gastro he was real nice and open to all questions. He
did the usual- upper GI, colonoscopy ,etc and found out I have Crohn's. I just
turned 15 and am 5 feet tall. Everything is fine. But as of now (March-April 97),
I am getting those flare-ups. I was on Prednisone last summer of 96 but now I
take 12 Pentasa and
1 Prilosec a day. These flare-ups I have are acute (strong) and last for about
a minute. They are so severe it makes me want to pass out. They happen a
couple times a 1/2 half hour. Right now I take growth hormone to get my
height back up. Does anyone have ay advise one haw to avoid, stop, "cure",
...etc these flare up...please e-mail me (maybe we can
talk). Thank you.
Hey, Great Page
In reading your Crohn's page, I felt like I was reading about my self!! I
was
diagnosed with Crohn's in the first days of summer of 95' , my first major
flare up! I was basically on and off a bunch of drugs until March when I
went to the hospital for 10 days, the worst 10 days of my life! I had
surgery then and I have been feeling great for the last year. By the way,
my
brother and my dad both have Crohn's or Colitis.
About me, my name is Steve, I am 14 years old (Almost 15) , I live in
Michigan, I am a freshman, and Crohn's has not affected my personality at
all!!! I am one of the happiest people you could ever meet, my philosophy
is
Just deal with it, with a smile and a laugh
From: Thomas
I am Technically not a teen-ager (I'm 22) but i was so impressed
with your page! I have been diagnosed with Crohn's disease since 1984 and
for all of it never had an idea of how many others there were out there
just like me. Although I have a mid case compared to some it is encouraging
to know that you are not letting this beat you. I have always found that
the best way to deal with this disease is through humor. I have been
on Prednisone on and off for most of the past 14 years and never have had
the mood swings that I hear others talk about because I've kept a positive
light hearted outlook. Anyways, thank you for posting this page, not for
me, because, like I said I've made it through high school and am in college
no but for all the others so they have a little easier time than I did.From:
Craig
Count me in too! I was first diagnosed with Crohn's in October of 1993.
(I was 14) Having never really talked to other Crohn's patients (teens)
I wasn't aware of the October mystery.
When i was diagnosed, the doctors in the emergency room thought I had
appendicitis! I had been feeling sick for two weeks prior. When i
awoke from surgery with two tubes down my throat, I was quite surprised.
I spent eleven days in the hospital and had twelve inches of my
intestines taken out. I was quite disappointed because the Phillies
were in the World Series and I was missing it. I've always been a big
fan! At any rate, I feel fine now and I've never really had to watch
what I eat. I take nine Pentasa a day.
I was just recently diagnosed with Crohn's but it is a very
familiar disease to me. My Father and my
Aunt have Crohn's. I hate it though. They both have severe cases
and that scares me.
Hey everybody!!
My name is Jenn and I am currently a freshman at Penn State University.
When I was fourteen I weighed fifty eight pounds and was 4'10". I had
really high fevers, sometimes 103, but very little stomach pain. So,
nobody knew what was wrong with me. Finally, this great growth doctor
figured it out, and I got the regular tests done, colonoscopy and Upper
GI to confirm diagnosis. Anyway, I'm able to keep up my weight, even
during flare ups, because of tube feeding. It's not bad at all, and I
just want all CD'ers to give it a chance. Basically, every night I
insert a tube in my nasal passage which leads to my stomach. I then
connect this tube to a bag filled with five cans of Ensure. As I sleep,
over eight hours, the Ensure flows into my stomach through the tube
machine. I never have to taste it. I don't feel a thing. And no, it
doesn't hurt at all. So, please, ask your doctor about tube feeding.
It's a great option to drinking disgusting Ensure or Nutra Shakes. And
it's so easy once you get used to it. I was scared at first, but it's
done so much for me. I've gained over fifty pounds.
From: Brian
Hi, my name is Brian, I am 21, and I was diagnosed in the mid
summer
of 1994. I didn't realize that I was sick, in fact, I originally went into
the
hospital to have an abscess removed. While I was under from the medication
for
the operation, the doctor decided to check for Crohn's. When I was told that
I
had it, of course I didn't believe it, because I wasn't sick. The doctor
told
me that I didn't know what to look for, therefore of course I wouldn't know
I
had it, and that he was here to help me.
Well, I didn't believe him, and I went out to get a second opinion, and that
opinion originally came back as negative until they went through with a
barium
x ray, and then I was told that there was no debate, I had Crohn's.
They put me on steroids, Prednisone, and I gained 40 pounds in a little
over 6
weeks, I got the acne on my chest/back, etc. The acne left, but the weight
has
not, and that was almost three years ago now.
The reason I am writing this letter is not to say that I am a-symptomatic,
I am
writing it because I have been looking for someone to talk to about this
disease for the longest time. None of my friends understand it because
nobody
else they know have it, and all they can link it to is me, so they don't understand the illness considering they have never seen me sick. (Not that
I
want to become ill.) I was hoping that maybe we could kinda chat back and
forth, maybe there is something I can suggest to help or vice versa.
I think that it is wonderful that you have decided to create a page like
this.
Brian
From: Julie
I was diagnosed with Crohn's when I was fifteen. Now I am
seventeen
and I'm still finding new things out about all the time. I've found
this page incredibly informative. Thanks for offering a place where
teens can find out about their disease. I was amazed when I saw so much information provided to teens on Crohn's
disease. I was diagnosed with Crohn's when I was fifteen. After two
months of being diagnosed as anorexic or bulimic, I was finally put into
the hospital after I'd lost 20 pounds in a little over a month and was
becoming dehydrated daily. I was diagnosed after the usual tests
(endoscopy, colonoscopy, and upper GI). Two years later, I am still on
medication, but I no longer have to take Prednisone and have been off it
for almost two months. This is the longest I've been in remission since
the initial diagnosis. This site has provided me with a lot of
information. Thanks for providing it.
From: Corinne
My dad told me to check this place out, and I'm glad he did, I
used to go to CCFA meetings and stuff, but no one was my age, sometimes
close to it, but not really.
This page has made me think too, I don't really watch what i eat that
much, the only thing that seems to bother me sometimes is pasta sauce,
and well i love pasta, so I just live with it. :) keep up the good work!!
From: Julie
Hi. I am not a teen, I am a 41 year old female that was
diagnosed with Crohn's when I was 36. My best friends son
was dx'd a couple months ago ( he is 17) with Crohn's.
He has been really sick with his Crohn's and I am very close
to remission myself.
I am glad to see that you are helping other teens to cope. I
wish Shane (my friend's son) were online to be able to
communicate with others. I printed the speech to the HS
class for him to read.
I was a Crohn's support group leader for 4 years, until this
year I gave it up due to my going back to college and not
enough time to devote to being the leader.
Keep up the great work, to help educate & support others
with Crohn's. IBD is hard to understand, and I'm glad
there are others who want to help.
Sincerely, Julie
From: Pierre
I have had Crohn's for 5 yrs an am sick and tired of it. I am
convinced
that with a site like this with enough research and from determined folks
like
us we will find a fail proof treatment or a drug with no side effects to
treat
our problem. It is out there and we will find it.
From: Richard
I am 19 years old and was diagnosed with Crohn's when I was 15.
I have had 13 inches of my intestines removed and have another 12
inches that will have to be removed. I also have severe bouts with
arthritis in my hips, knees, and my arms. I also get an infection
in my eyes that is a side effect of Crohn's. When I was first
diagnosed I was 5ft.11in. tall and had lost down to 103 pounds. My
mother took me to doctors and they said I had mono. I have had to
depend totally on my parents for financial support. I can't work
because when I get up in the mornings my arthritis is so bad that
I fall down. I am having a hard time dealing with all of this
sickness, mentally. My doctor has just ran a bone scan on my
entire body to see how many of my joints are affected with
arthritis. They tell me this is a side effect of Crohn's. I take
Naprosyn for arthritis and Asulfasaline and folic acid for my Crohn's.
Hi,
This page is great! I am 19 and I was only diagnosed with
Crohn's
Disease about 4 months ago, and I am still learning about the disease.
Until I was diagnosed, I had never even hear of it, but now, I am
finding more and more people who have it everyday.
I was diagnosed with Crohn's disease in Nov.96. I was admitted to the
hospital with what they thought was a "Hot" Gall Bladder. Went that
showed up negative, they were stumped and started running every test
that they could think of. Finally after 5 days of missing classes and
not finding anything, they did exploratory surgery. They didn't expect
to find anything boy were they WRONG!!! I woke up in extreme pain and
was told, "Boy did we have fun today" They have removed my appendix,
1 1/2 ft. of my intestine, and a cyst. I was later diagnosed with
Crohn's. I had no idea what it was and I am still learning everyday.
Without my friends, I don't know what I would have done. I was in the
hospital a total of 11 days. They visited me everyday and helped me to
stay caught up with my school work. My boyfriend and all my other friends
are the greatest, and they are really understanding when I have my "bad
day." My professors was understanding, but I don't think that many of
them even knew what Crohn's was. But here's the good part of the story,
I went back to school just in time for finals, took them and made up the
two weeks worth of tests etc., and still got over a 3.0 GPA for the
semester. I haven't had any problem since (Knock on Wood) and I am still
pursuing my bachelor's degree in Civil Engineering at the University of
Pittsburgh. This page is really great, keep up the good work.
To my fellow "CDers" I would be glad to talk, email me, I'll write you
back.
From: Thomas
Hi, my name is Thomas and I'm 18 years old. I was diagnosed with Crohn's disease 3 years ago and have struggled every winter since then. I
have a few ideas on how to help limit the severity of the flare-ups. Since
my bad months tend to be February and March I figured there had to be a
reason. I came to this conclusion. I am extremely active up until
November. Then due to the cold weather my activity level decreases. So,
this year, I decided I was going to try something. This year I really
concentrated on staying active throughout the winter months. I have put
myself on an extensive workout of lifting weights, running, and other
activities to keep me active. I have had my first flare-up free winter in
3 years and I am in excellent shape! I feel this is an excellent way to
help combat the effects of Crohn's disease. Not only do I feel it helps
reduce the likelihood of a flare-up but being in better shape will help you
fight the effects of a flare-up more effectively if one does occur. I hope
this information helps you in someway.
From: Michelle
Ho there. I'm Michelle, I'm 22 and live in Austin, TX. I was just
diagnosed with Crohn's last week, but I already know a lot about it
since my sister has had it for five years (she's 17 now). I'm
supposed to be graduating from U.T. this May and leaving for
grad school in August, but it is looking like all this will put that
on hold for a little while. I am trying not to stress too much
about that. Luckily, my gastro doc (who is SOOOOO much cooler than
the rheumatologist they sent me to at first when they thought this
was Lupus) has told me that it looks like my cd will be a lot milder
than my sister's. The hardest part right now is getting my boyfriend
to deal with. Feces do not exactly make for romantic conversations. :)
From: Rachel
Hi there, I am 19 years old, and I have been diagnosed with Crohn's
disease for about 6 months now.
I guess I will share a bit with you on how I was diagnosed, I started
having problems with abdominal pain after I ate about 2 years ago. It
kept coming back and I would get recurrent bouts of diarrhea. I went to
my family doctor and he diagnosed me with a spastic colon and an ulcer
and gave me some meds for that. It didn't seem to work really, whatever
I had just seemed to go away when it felt like it, not because of the
medicine he gave me. Well, last summer I got sick really bad. I had
excruciating abdominal pain and it got so bad I just couldn't eat. I
mean, I wanted to, but the pain was just so horrid that my body wouldn't
get hungry anymore. I had bloody diarrhea and had to go to the bathroom every ten minutes. I am 5'8", I got down to 107 pounds from being 130.. I
looked horrible.
I finally went to the hospital emergency room when my hair started
falling out from malnutrition.. They basically sent me home and told me
to 'eat'. I tried, didn't work, so the next time I went to the hospital
I threw up everywhere so they would finally admit me. <G> I got an upper
GI and a colonoscopy and they finally diagnosed me with Crohn's. I do ok
now, I read from the newsgroups sometimes and I feel lucky that I don't
seem to have it as severe as some of the other cases.. Maybe once every
two months I have to stay in the hospital when it acts up, mostly for
dehydration. I eat pretty much whatever I want to (within reason) when it
is in remission, and it doesn't seem to hurt me..
Sometimes it is a hard thing to deal with. People just don't understand
it sometimes, I try to explain to them how it is an autoimmune disease
and what it does blah blah.. And most people seem to understand or try
to, but there are always those few who act like idiots about it. The
thing I guess that bothers me the most about it is the hospital stays, I
hate looking like a junkie when I come out of there from all the IV's
they poke me with. And also the diarrhea.. But that can be controlled
more.. And tell me, do you know if lack of sleep effects Crohn's disease? sometimes when the
Prednisone keeps me awake at night I feel
kind of bad the next day, and not just being tired <G>
Anyway, thanks for putting this page up for people with Crohn's. It
really helps a lot when people ask me that have internet access want to
know about my disease and I point them to one of these pages :) Nice
Job.
Rachel
From: "RTrzas"
Hi,
I'm new to AOL and decided to see what the Internet had on this
disease. I too, am one of the unfortunate ones to get this disease and
know
exactly what you are talking about... no one understanding or caring to learn
about it.
I was in college when I first started having trouble with my
stomach.. In and out of the doctors office for x-rays and other tests for
which they never found anything. After about two years of dealing with
stomach cramps, it was also in September of 1992 that I was diagnosed with
Crohn's. At first they ran several tests because they didn't know what it
was. I was catheterized, has upper and lower GI's, ultrasound and
then
finally a colonoscopy and an IV for three days. The doctors finally, after
calling in a specialist, told me the diagnosis.
I'm doing
fine right now. I have trouble know and then ( especially after eating fibrous foods) which I love, but oh we'll. I'm taking Pentasa (16 pills a
day) and its seems to work well.
From: Mike
I think that it is a great thing that someone who has even the
slightest idea about our "kind" of people is making it just a little bit
easier to talk about Crohn's. I find it very hard to. Nobody really
understands. I am paranoid about when m stomach will start to bother me. Or
even where I will be. Better yet "WHO" will I be with when my stomach does
start to bother me. Right now I could really use some help on how to get
myself back together. I'm having a lot of different things happening o me.
I'm wondering if there is anybody from my age group that understands me and
could possibly help me to understand what is going on to me. I'm new to
this Crohn's thing.
From: Lauren
Great Site. I am 16 and the doctors are trying to find out what
is
wrong with me. I have been sick since I was 9. But they always say
it is stress or something else. I finally have a doctor who is not
giving up. I had mono last year. I had my gallbladder out in December.
Everyone thought I was anorexic. I lost a lot of weight. I gained it
back after my surgery. I am having the barium on Thursday and I hate
it. I have had it before. They always think it is my appendix. My
cousin and my grandmother have Colitis. I hope they finally figure it
out. I am on home study again. I am always in pain. Since I switched to
women doctors I am having better luck. But I am still sick and the
medication isn't working. I have a few good friends who have really
stuck by me and haven't given up when I don't feel like talking on the
phone. I was sick on my birthday and didn't get my license hopefully
soon. Bye for now.
Go on to April 1997
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