The Feedback and Experiences Page: November 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. "BrainGuy" 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: Joie
I'm 15 years old and was diagnosed with Crohn's in September. I had been having strange
eating habits all summer & as soon as school started I was having abdominal pains every time I
was hungry, looked at food or tried to eat. The first time I saw a gastro-enterologist he made an
appointment for me to have a colonoscopy and upper GI. Drinking colite & barium are two of the
worst experiences of my life. Apparently I was easy to diagnose because the disease had
progressed so far. After I was diagnosed, they put me on Prednisone just to get everything
under control, but the side effects have been terrible. Have you ever heard of the Prednisone
causing knee pain so bad you can't get up? I was on Pentasa for about a week and a half, but it
just brought all my symptoms back, so right now I'm waiting for the 6-MP to kick in. (It's
supposed to take three months). So far this whole experience has just made me realize what I
strong person I can be. It sounds sort of cheesy, but this really has made me stronger. I used to
cry every time I got hurt, and now I can take all kinds of pain without a second thought. I've had
to work extra hard in school to make up all the work I've missed, and taking all of the medicines
has made me more responsible. I just wanted to
write to tell my story and to say how helpful your website has been for me.
My friends have no idea what's going on, so reading other people's experiences helps a lot. If
anyone wants to write to me about anything, I'd like to have a pen pal with Crohn's or something.
Thanks for a great site!
From: Kristina
I was so happy to find out about this site. My parents found it the day after I was diagnosed. It
has made me feel like there is always a place I can go to where the people understand what I'm
going through. It's awesome. Thank you for taking the time and making this website. I'm sure it
has helped many people, the same way it has helped me.
From: Gary
I have been on Prednisone for over 5 years and have had the usual side effects but not so severe
that I need to complain. It has kept my colangitis/colitis/hepatitis in check. I have had my colon
removed just recently and hope to have a pelvic pouch replace my temporary ileostomy. I have
to be completely off Prednisone for the pelvic pouch operation in 2 months. I hope I don't have
problems coming off it. If anyone has any comments about coming off Prednisone please let me
know.
From: Catherine
I think this site is a great site, its really helped me come to terms
with CD. Its a shame more people do not use the chat room. I've
been in there several times but unfortunately not spoken to anyone.
Any way keep up the good work!
From: Susan
Well, my doctor put me on Prednisone (again) and I've have had a really tough time in my life:
with my health (of course), school, and boys at my school think I'm a loser and make fun of me
all the time. It's good to know there's other people in the world who are just as mad and angry as
I am. My friends have started to withdraw from me because I haven't been there and because I
can't play as many physical sports. They like to play basketball and I'm stuck all alone trying to
find someone to talk to. I wonder sometimes: Why? Why me? Why did all of these bad things
happen to me? I just try to remind myself that one day I'll have my life back together. I just wish
that one day, would be today.
From: Lisa
You bet!! I have a story to tell about a TERRIFIC person. In August of 1996 I met this really
great guy -- he was kind, considerate, smart, funny, absolutely EVERYTHING a girl would dream
a guy would be. We went out on our first date, second date, maybe even a third date, when
suddenly I was overcome by sudden and extreme pain. I thought I was dying. But Jeff (the
great guy in this story) stuck around for this... We barely knew each other and he was there for
me. He took me to countless doctors appointments, sat with me when I had to prepare for tests
by drinking that disgusting Barium and Colyte-- he was the one who was there for me when in
September 1996 I was diagnosed with Crohn's Disease. Right then and there I told him that he
should run the other way because I was diagnosed with a chronic illness and I didn't think it was
fair to put him through that -- I actually tried to PUSH him away by telling him that it was going to
be awful being with me because I was "sick" -- but he wouldn't go. And to this day - one year
later and 3 surgeries later, he his still here with me.
He is a one of a kind person like none other. We are just now starting to have "normal" (which
means me not lying in bed writhing in pain -- or in the hospital or at doctors offices) time
together!!! So for people (like me before meeting Jeff) who think that there is no good in the
world anymore -- there is hope!!!!!
From: Trisha
My name is Trisha and I am from Fessenden, North Dakota. I was diagnosed with Crohn's
disease in October of 1996. I had just begun my senior year of high school and thought that it
was going to be the best year of my life.
I started getting sick at the end of September of 1996. First I thought that I just had the flu,
then my mom thought that I had an ulcer because every time I ate something I got severe pains
in my abdomen. My mom has Crohn's but she never thought and hoped that I would get it. I
went to the doctor and had some test done. The doctor told me that he was sure that I had
Crohn's but I should go to a specialist. I first thing I thought was why me and why
did my mom
have to give me something like this. I didn't want to go to school and tell my friends because I
felt embarrassed. I didn't have much of a social life until I got it under control. All I wanted to do
was sleep, but the longer I stayed home the more I thought about it.
I went to a doctor who knew a lot about Crohn's and was very supportive. I was put on 60mg of
Prednisone and I took 4 tablets of Pentasa 3 times a day. I had lost a lot of weight because I
couldn't eat but after taking the Prednisone I gained back my weight and then some. My face got
round and my pants size went up. I couldn't figure out why they would give someone a drug that
would do this. I was doing very good with controlling how I felt. My mom always told me to watch
what I ate because she knew what I was going through. I was gradually taken off of the
Prednisone. I was getting excited because I was done to 10mg. About that time my
Crohn's flared up again and my medication was increased.
August 1st of 1997 in had intestinal surgery at the Mayo Hospital in Rochester, Minnesota. I
was very nervous, but couldn't wait to feel better. They took out 6inches of my small intestine
and a little bit of my large intestine. I was out of it for a couple of days and in a lot of pain. I laid
in the hospital bed wondering why I wanted to have surgery. Today I would never go back on
what I have done. I am still taking Pentasa because I am part of a research group at the Clinic.
If there is anyone out there who is trying to decide to have surgery I would tell you to go for it.
You will never believe the difference.
I am now a Freshmen in college at the University of North Dakota in Grand Forks and loving it.
I am able to order pizza with my friends and make the late night stops at a fast food joint.
I think that this web page is awesome. I never knew where to find any kind of
information or find out about others that have it. I really commend
people like you who have time to put your heart to so many people who
believe that they are the only one's in the world that have this disease.
When your not feeling good and wonder why this has happened to yourself
just remember that there is always someone who has Crohns that is thinking
about you.
From: Matt
I am 22
years old. live in Iowa and have had Crohn's for 10 years. I
have had some severe flare ups but thankfully have always been able to
control it with drugs like Asacol and Prednisone. I also recently
started 6-MP. This drug really helps me and I don't have any side
effects that I know of.
So right now I take 12 Asacol pills/day and 1.5 6-mp pills per/day. My
Crohn's is calm right now. Truly, never give up hope!
From: Mary Ellen
I think what you are doing is great. Just last week my 11 year old nephew was
diagnosed with Crohn's. I was looking for info. on the illness and came across your web page. I think it
might be helpful for my nephew.
Hi. My name is Roxana, and I was diagnosed with ulcerative colitis when I was 13 years old. It
was a scary thing for my young mind at that time. I am now 18. I can barely even remember
how it started. just out of the blue one day, I started having severe abdominal pain and excessive
diarrhea. There was blood also. That scared me so much. I thought I was dying. I would cry myself to sleep
every night and I kept it all bottled up inside of me. I didn't tell my friends or my
family. My family was suspicious, but I only reacted in a bitter manner towards them. Finally,
one day in the summer before my freshman year of high school, I distinctly remembered sitting
down on my mother's bed and watching the Brady Bunch. I started crying and told my mother
that I could not take it any more and that I wanted to get better. I was in denial and I was finally
facing the fact that I had a problem. she was so relieved to hear me say that and immediately
scheduled a doctors appointment. During my time with diarrhea, I had lost a tremendous amount
of weight. I was in the early 90's which was very abnormal for my height. The doctors all thought
that i was just an anorexic that was malnourished. That infuriated me. I had always been a small
framed person. The first doctor I went to that that I had e. coli in my intestines and tested me for
that. It came out negative. I then went to a children's hospital to find out what was wrong with
me. They did a colonoscopy and told me i had ulcerative colitis.
I was so confused. I didn't know what the term meant to me or what impact it would have on my
life. They then started me on a low residue diet. They put me on sulfazaline and 40 mg of
Prednisone/day. I was happy to finally know the cause of my problems. I did not enjoy the steroid
treatment at all.
Because I was so embarrassed of human contact, I burrowed myself in my room the whole
summer, and lost a lot of my friends. I would not return their calls. I was so bitter about it all. I
cried everyday to my mom about how puffy my face was and bloated and fat I was and how I
missed my favorite foods,
especially caffeine. I was severely depressed the summer before my freshman year and
attempted suicide a lot. By the time my freshman year began, the steroids were weaned off and I
was on the sulfazaline. I was a happy person again. My friends would ask me about my problem
and I often had a hard time explaining it to people. I was embarrassed. I would tell them I had
ulcerative colitis and it was ulcers in my colon. I then narrowed it down to saying that I had
severe digestive problems. I am also anemic. Anyway, years passed and I was doing great. My freshman and sophomore years were great.
The summer before my junior year is one I will never forget. I was preparing to take a trip to
California with a friend and my mom.
Everything was fine until I got there. I could not take a normal bowel movement. Pure red blood
would drop out; that's all. I was in excruciating pain and in the bathroom 24/7. I was
embarrassed in front of my friend and did not want to ruin anybody's vacation by having to rush home to the
doctor, so I ignored it again. But this time I not only ignored it, but I ignored it for 2 years. When
returning from California, I started crying and told my mom I had to go to the doctor. We went, and the
doctors suggested a suppository.
I was like, hell no. So he increased my sulfasalizine. My symptoms did not improve. I pretended
they did and told my mother that it was fine. I was not fine. I lived a lie for 2 years. I put on a
happy face, when the inside of me was falling apart. I was in so much denial. I would not take my
medicine and denied that I even had a chronic disease. Finally I reached my senior year-the best
year of high school, right? Well, not for me. I was so tired, I couldn't do my homework, or go out.
My blood count was, like, 5. I was in so much pain, I thought I would surely die. I began to
become reclusive and lose my friends. I fought with everyone, I was failing everything. My mom
harassed me each day to go to the doctor. I refused because of 2 things:
surgery and prednisone. Those were my 2 darkest deepest fears of life. I also was
vomiting a lot with my diarrhea. I was constantly nauseous and never hungry. I went out to eat with a friend
and we came back to my house, and I immediately threw everything up. I wondered why my
symptoms were so different from before. I also had sores all over my mouth and down my
throat. I thought I had hemorrhoids because my butt hurt and I couldn't walk or sit. It was agony. I
made it through my 1st semester of senior year while living the lie that was then my life. I also had
fevers of 102-104 every night. By second semester, I could not go on. I started missing weeks of
school. I could barely move. I was so weak. I crawled on the floor most of the time. I went to a
doctor and told her about my previous diagnosis of colitis and she said she thought it was
something else. She thought I was constipated and had stool caught in my ribs and between
organs! I thought that was unbelievable. She did a colonoscopy and put me on high dose
steroids and Ensure drinks everyday. I had taken a medical leave from school and was going to
complete my work at home. My symptoms did not improve while at home. I actually got worse
as the days passed. I had a doctors appointment scheduled with another female doctor. That was the day I
almost died.
My mom and I were left at home. I was shaking uncontrollably in bed and could not move. My
mom called my dad and I had passed out with my eyes rolled back. They thought I was dead as
we went to the hospital. I awoke in the car. I was furious because I despised hospitals and I
knew I would be hospitalized, but I was too weak to argue. We got there and I was immediately
given a blood transfusion. My blood count was 5 or 4. You die when it is at 3. That scared the
hell out of me. The blood transfusion also scared me. I feared I would get AIDS. They gave 3 or 4
packets of blood during my stay at the hospital. This new female doctor examined me and said I
had Crohn's Disease, not colitis. she knew this because I had pains in my anus and mouth sores down my throat. I then got a room and the horrible tests and stay and IVs began. My
worst nightmare was coming true.
I had a CATscan, endoscopy, X-ray, colonoscopy, barium enema, barium tube down my nose to
see my small intestines, and etc. What was a 2 week stay felt like a year. The tube was the
worse. My doctor told me my diagnosis:
my Crohn's was only in my colon (crohns-colitis), I had a fistula, and polyps in my colon. I had
no abscesses, thank god, and surgery would not be necessary. She also found out that I had heliobacteria in my stomach and had to start a lot of antibiotic IVs. I was on so many medicines that
my head spun. I was on TPN also. No solid foods at all were permitted. I was on bowel rest. The
time was coming to prepare to go home. They were going to surgically put a tube in my chest so
that I could get the TPN at home. So I underwent surgery so they could do that and was unhappy
and in pain. Plenty of morphine afterwards though. I felt like a freak and recluse and missed my
friends. I did not like having a foreign object in my body. I did not eat solid foods for, like, 2 or 3
months. I soon got better and better at home.
Steroids were slowly weaned and solid food was allowed for me to try. the tpn was reduced. I
was completely different medicines than I was on for colitis. I currently take Flagyl,
Pentasa and 10 mg
of Prednisone on a every-other-day basis.
I weighed 89 lbs. in the hospital. I take vitamins also. Anyway, they finally took the TPN out
and I was able to go to California w/out an annoying tube in my chest. I was started at 40 mg of
Prednisone,
(or was it 30?) but i now take 10 every-other-day. I am happy now, and feel better. My only
problem is rectal bleeding once in a while and my doctor told me it is part of the disease and that
my major disease activity is in the end of my butt. So, I take suppositories when it acts up. I am
finally out of denial and went to 2 psychologists to deal with my anxiety and and stress problems.
I have always been a worry wart. I am so happy I got help. I am open with my disease and
actually quite proud of it. I can tell my friends openly what it is without being
embarrassed. I was
also put on Prozac due to my depression and psychological problems. It has helped me so much.
Sometimes, I think the Prozac is what keeps the disease inactive. I graduated high school with
the rest of my class and I have been happy since then. I plan on going to college next semester and I currently work at Blockbuster Video. I just recently moved to California also. The weather
here is good for me. I also got a flu shot. I take care of my health a lot now. I used to ask myself
"Why me? What did I do?" but this disease rekindled a lot of broken friendships and made a
smarter stronger person. It rehabilitated me in a way. It was my shrink. I believe that
everything in life happens for a reason. It feels good to finally get it all out. This is my story and I
thank you for patiently listening.
From: Michael
Webmaster, thanks to your page I have made an "email buddy". I just wanted to say thanks. I f
you have anyone thats about 11-13 years old you can give them my address. Thanks.
From: Guğmundur
Hi.
I am 17 years old and was diagnosed with UC 4 years ago. Found your site...it was very helpful. I live in Iceland were there are few with Crohn's or Colitis. I take Pentasa now but I had to take Prednisone for 2 years...boy, did I swell! Pentasa is OK, because Prednisone is THE WORST DRUG OF ALL TIME..i hate it.
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